Acute spinal cord injury experiences

[Wise Young]

I know that some people have posted such information before but i think that families new to spinal cord injury would be helped if some people could post a description of what their acute spinal cord injury experience was like and what they felt in the hospital.

Wise.

[shmily524]

Hello ~ I'd like to share our story.
Amazingly we are coming up on the one year anniversary (March 18th) of the attack on my husband's life. He was brutally attacked in the parking lot of his work. The knife severed his spine at L1/L2 but that was the least of his problems. He nearly died that night.

At University Hospital in Newark --- Dr. Kaul saved his life. Still -- he was in a coma for 2 1/2 weeks. I was numb or at least I wanted to be. We are a young couple and married 15 years with no kids. We are each others worlds. I wanted to die. The priest even came to read his last rites.

There was so much equipment in the room with Bob that he barely fit in the room. So many monitors and beeping and buzzing. He was on a ventilator and developed pneumonia... nearly died from that. I have a bit of a medical background and so I knew what most of the numbers meant and that was not good.

His fevers spiked as high as 107 and the doctors couldn't find the source of infection. His blood pressure was way too low his pulse way too high and they couldn't get him off of the ventilator.

I lived there. I wanted somebody to tell me that it was going to be okay. Anybody... but nobody would. They were very non-commital, I guess they didn't want to raise false hope.

Every day for 6 1/2 weeks I lived at the surgical intensive care unit. I played music for him (our favorites), I spoke to him letting him know that everything was okay at home == the cats were fed, the bills paid and garbage out. Those are the things he would have worried about.

It was an emotional roller coaster. They said it would be. A good day... two bad days... a worse day.... a good day.

Eventually, the good days were more and the bad days weren't so bad. He woke up on opening day!! He's a baseball fanatic so maybe thats why! LOL! After my wedding day... this was the happiest day of my life. I am so glad that I was there.... I was the first one he saw!

He went to Kessler Rehab in West Orange and was there from May until September -- rushing back and forth to University Hospital on a couple of medical emergencies. Vomitting for no reason, a bleeding bladder.... and so on. I never learned how to remain calm through all of it. I was hyper and the doctors often teased me... asking if I was convulsing. Good thing I had a sense of humor.

One thing I did learn though ~~ I learned how to be an advocate. I was and still am Bob's strongest advocate. Even better than he advocates for himself. While we had the best of care at both University Hospital and at Kessler... I attribute that in large part to the fact that I was there... very involved ontop of everything (and everyone when needed)--

Now... I am happy to say (and somewhat amazed) that Bob returned to work yesterday!!! http://sci.rutgers.edu/forum/images/smilies/smile.gif
He drives using hand controls http://sci.rutgers.edu/forum/images/smilies/smile.gif and is very mobile and completely independent!

He can move is quads (front leg muscles) but can only walk very short distances using a walker. He is in a wheelchair but that doesn't matter ~~ he is still Bob ~~ the same exact Bob that I fell in love with 18 years ago. I thank God for that.

With all things in perspective... we now know what is truly important. Family, Friends and love.

If you are reading this and going through the crisis at the early stages... please keep on believing that miracles happen ~ because they do. The Dr who saved Bob's life told him that he was his toughest challenge and that there was definitely "divine intervention" ~ That is for sure.
My prayers are with you ~
Warmly,
Dee

[marmalady]

Hello, Shmily!!!!! How ya doin? Sounds as though Bob is making great progress - How about you?!!

_____________
Tough times don't last - tough people do.

[marmalady]

Wise, it may be difficult for some of us to go to 'that place' in our heads again. I'm trying, in little bits and pieces, and will post when I finish.

Wonderful idea, just be a little patient with us!

_____________
Tough times don't last - tough people do.

[lilsister]

my brother is c5-6, complete since 8-14-2000. i flew immediately to wisconsin from tennessee and stayed 6 months. luckily i am a nurse and not easily cowed by medical personnel. i know he wouldn't be here if he hadn't had an advocate there. he had pneumonia 4 times, sepsis and bedsores. i had to call up doctor -nurse care conferences to get wound care for the bedsores. i had to do cpr, since the nurses at one place had turned off the alarms and didn't know his o2 sat was <70%. i had to teach respiratory care personnel how to quad cough him. i had to bath him because the aides wouldn't take off ted stockings to check and clean legs and feet. i had to threaten legally to get needed stabilization surgery. i was told to put him in a nursing home, i was told that insurance wouldn't pay for any supplies at all. they kept him on so many tranq's it was impossible to judge his mental status or for him to take part in any reab til i weaned him off myself. SO, i totally agree, each person has to have an advocate, someone who cares to see them thru, someone who can be calm and can stand up for their rights. one resident physiatrist told my brother that not only would he never walk or have any mobility at all, he would never be a candidate for "that experimental stuff that is 20 years away". it wasn't til the third try at rehab before the progress began. hope, advocacy and prescence all make the difference.once the acute phase is past, patience and persistence is key. one very important tool is keeping a journal, write down everything, progress, insurance medical information because it will be invaluable at some point to be able to calmly give dates to insurance companies, recall events for future doctors, for medicare, and for the patient themslf to read since many times they have been in coma or shock or sedated and don't remember events. please know that it gets better, the acute phase is the time for support and advocacy

[betheny]

I was in the ER of the "indigent" hospital in Houston on a Saturday night, because they're the ones with the most experience with SCI's. It was a combat zone, but I'm glad that's where I went. I was all strapped down and just scared someone would forget about me in all that organized chaos. I kept yelling "My name's Beth and I'm scared". I tried to only say it every half hour, but time was not a firm concept. When my husband got there, I told him he had to make sure that I got a certain medicine before 8 hours was up. (It was methylprednisone, I had just read something about it in Reader's Digest. I got the MP.) I didn't want to tell the doctors for fear they'd get mad at me. I sure didn't want that, I've worked with angry doctors most of my life. I hated being that vunerable. I also asked Steve to watch my breathing (turned out half my diaphragm was paralyzed, but it's never been a problem). So-MRI, talk with the surgeon, I'd ruptured C5-6. Off to surgery, woke up in the neuro ICU, prognosis was that whatever I recovered in 24 hours was what I'd go through the rest of my life with. The nurse explained that they would do something called intermittent catheterization, which confused me. I didn't know about bladder spincters and no one told me. I watched the clock, worried that they'd forget and my bladder would burst. Finally I asked them to put in an indwelling so I could sleep. Everyone in the ICU but me was gorked. My worst problem was boredom, no TV, no books, no company. What a dumb thing to worry about... The morphine hallucinations were terrifying. My strongest emotion was gratitude. I was a quad, but one with no brain injury and by some miracle I could move my arms and hug my son and my husband still loved me even though I was a hopeless bonehead. By 24 hours I could move 1 toe. I've fought like a demon ever since with the exception of 6 months of profound depression. I thank God I found this place to share the experience. And miracles DO happen. I walked .31 miles on my treadmill yesterday. After 2 1/2 years (you won't believe this, Wise) I got almost normal bowel function back! Rehab is a whole other saga; even more intense that that first week.

[Free]

I won't post my experience, but these are my recommendations for new SCI people. Make sure the steroids are administered ASAP. (I'm sure you know the proper names, Dr. Wise.) 30 yrs. ago they didn't exist. Get to a regional SCI ctr. ASAP, or at least a facility that is familiar with SCI. An extended stay in a general hospital may cause irreperable harm. If surgery is required to clean/stabilize the spine have it done by a reputable neurosurgeon ASAP. Work hard in therapy; expect the best, but prepare for less than the best. Be a sophisticated consumer of medical services. Break down your week/day in terms of activities for daily living. Make sure you are comfortable with each aspect. Ask question; write them down if you need to. Begin planning for your discharge as soon as you have a fairly accurate sense of your diagnosis. Home modifications, vehicle modifications, nursing or home health assistance, returning to school, work, or play will all require consideration. Know all the agencies whose responsibility it is to assist you; i.e., medical facilities, centers for independent living, voc rehab., state and local social service agencies. Never lose your sense of self and personal dignity. Don't let anyone or anything comprise you.

[Kaprikorn1]

Wise,
here's my story...

Nov 2001 I fell from a scaffold in a sitting position 15' to a concrete floor. When I hit my whole body from neck down felt like on fire with thousands of needles. I knew s/g was really wrong. Did not lose conciousness. Ambulance came and took me to San Ramon Regional Med Ctr ER.
ER attending very inexperienced with SCI but called in consult by Neurosurgeon and Orthoped surgeon. Immed X-Ray and MRI showed burst L-1, bleeding in cord, bone fragments in cord. Steroids administered and surgery scheduled 2 days after as final consult was too late to sched for that morning. Morphine drip throughout next day.
Surgery was 6 1/2 hrs and included draining cord, Univ Spine System synthes and bone fusion using bone from right iliac from T-9 to L-3, spinal decompression, removal of bone shards from column performed by Dr Robert Rovner and Jeffery Randall.
Severe pain at sight for weeks. IV morphine, demerol & dilaudid for 1 week for pain. Diaherrea uncontrolable and bladder sphincter locked shut. Foley catheter installed in ER and left in. I was also in a full thoracic brace (the kind like a turtle shell).
At 10 days post, PT and Nurse forced me to start trying to relearn to walk. First day...2 steps. Second day...4 steps, etc. By day 14 I was walking with walker twice around the hospital floor with walker.
Day 15 transferred to St Mary's Hospital, SF,Ca for rehab under Dr Stanley Yarnell. I worked real hard on rehab and PT, OT, learned to do BP and ICP. By Christmas eve I was released to go home. Since then 3 mo's of PT and lots of self work walking, riding stationary bike, light weight work I am fully ambulatory but still weak in legs and back.
As was discovered through rehab I suffered L-1 & 2 plus S-1, 2, 3 & 4 plegia. As of 16 mo's post injury, I still have no sexual function, bowell problems (constipation and diaherrea, back and forth) and constant intermitent catheterization for urination. My left foot still drops a bit, I have numbness at posterior pelvis area, and severe leg spasms and cramping at night.
I was extremely lucky to have received treatment from 3 of the greatest SCI doctors in the Bay Area. Without them I'm sure my current condition would be much worse.
I hope this will help anyone new to SCI and give some hope to those who feel helpless upon hearing they have SCI.

Kaprikorn1

[crazynurse]

My description of my hospital stay? Well, here is what I remember along with some of what my girlfriend (who just happened to be working as an RN in the SICU at the hospital I was Lifeflight'ed to the night of my accident, hows that for wierd?) told me about what was happening to me during this acute time.

My name is Andy, and on Aug. 8 2002 I had a motorcycle accident which involved me going around 45 or so sliding into a guardrail. A summary of injuries include fractured T5 and T7, exploded T6 (bone fragments found in both lung fields in pre-op x-rays), most or all ribs sheared off from the spinal tract on the left side and fractured, collapsed lung, broken clavicle. I was given the mega-doses of steroids that are supposed to help with spinal cord swelling that night in the ER, and 3 days later after I was stable enough to have it, I went into surgury to stabilize the spine with rods from T2 through T12. My surgury was only posturally accomplished as there were no indications that signals were being transmitted through the cord via that somatosensory evoked potential testing that the doctors can do, so no getting carved into from the front to do repairs for me. There was some bone removed from my hip to seed my spine for future bone growth in the area of damage. The surgeon that did the operation told me later that 90% of people injured in the manner I was dont survive, apparently I was in pretty bad shape.

After surgury I was transferred to the SICU where I started to have problems with my lungs and oxygen saturation (ARDS). This went on for around 3 weeks, all the time I was under mega doses of drugs to keep me out. I didnt get any nightmares like I have heard others have had during similar situations, just one or two strangely vivid odd dreams that I remember. I have heard that the nightmares occur when there is not enough of the drug "cocktail" being hammered into you during this time, thankfully my girlfriend who took care of me during my ICU stay (damn lucky, eh?) made sure that I was well taken care of with the dosing http://sci.rutgers.edu/forum/images/smilies/smile.gif . Of course there were the times that she wasnt working, and another nurse was assigned to me where I would go wild for some reason, this happened quite often I hear, and I even extubated myself and yanked out a chest tube once as well I heard during this time. Anyway, after those weeks, they started to ween me off the drugs and I started to come to over the course of a couple of days. That is when it started to get weird for me. I thought me room was a stair well and someone forgot to take me up to wherever I was supposed to be extubated and whatnot, I started to have some interesting auditory hallucinations, etc. during this time too. Once I was sort of consious they extubated me and the course of getting suctioned though my nose every half hour or so to keep my lungs clear started, that sucked. After 2 days or so I was sort of breathing ok, and for one day I was actually able to cough ok enough to hack up the crud in my lungs. That is when I was transferred out of the ICU to a step down unit...and things went downhill again.

After being transferred to the stepdown unit, I remember that the nurses there were unable to make the pulseox device work, it was interesting seeing two of them tinkering with it, and when they couldnt get it going, they just walked away. That was a sign of things to come. In short, while in that unit I was basically going down hill fast, and if my girlfriend wasnt visiting/raising hell to get the nursing staff to get their butts in gear, I would have died there. Of course, she couldnt be there all the time, and when she wasnt, I felt like real hell with not being able to breathe due to the lungs filling up again and not being able to cough well enough anymore/creepy slow response by nursing to suction me. After 2 days there, I crashed again, blood sats in the 70's, and feeling I couldnt breath of course. I remember that night, at one point I was bagging myself to try to pound in enough oxygen to my lungs. I was intubated and put on the paralytic drugs again that night. After what turned out to be a week I was revived again in the hospital's MICU, where the lackluster care in the step down unit was no longer an issue, and I started to get better.

Now it got interesting...apparently at this point I wasnt following my insurance company's (BCBS) recovery timetable for this type of injury, and was visited by the hospital's social worker staff to convince me to go to a long term care facility because of the condition of my lungs (ARDS). Mind you that this started two days after I was waken up again, on a vent, with a traciostomy done at this point. I couldnt talk to these people, just weakly scribble my objections to being rushed out of the hospital too soon. I just wanted to recover enough so I could breath myself/ween off the vent at the rate I felt comfortable at the given time and then go to the rehab hospital, not the nursing home type place. It was very trying not to be able to get out of bed and smack these people around for doing this BS, it was bad enough dealing with the problems I had without having to argue with some bureaucrat about what was to be my medical care plan. Anyway, between myself, my dad, and girlfriend I was able to stay in the hospital until I weened off the vent a couple of days later. After a few more days I was transferred to the rehab hospital...and I was damn glad to get out of that place after being there for 6 weeks.

Hopefully some of this story will help others figure out what is going on. Things to note about acute phases of this injury...keep on the hospital staff to do their jobs. Make sure that your loved one is getting turned so there will be no pressure sores (I still managed to get a level 2 tailbone sore even with my girlfriend doting over me, I can imagine what would happen if she wasnt around and knew what was going on). If something seems wrong and nothing is being done about it, raise hell! The squeaky wheel gets the grease! Even if your loved one is in a "top rated" level one trauma center type hospital, things can go south. Maybe since I had an inside track on what what going on due to my girlfriend, but when I hear stuff like I was almost killed a few times while in the hospital due to lackluster care, it is scary. Mind you my injuries/complications were kind of severe, but some of the stuff that happened to me or I heard about later were uncalled for.

Andy

[gvinton]

I think my friends and family would have appreciated reading of experiences similar to my own, so here goes...

Labor Day weekend, 2001. We were having a backyard barbeque with a number of families from the neigborhood. Games, cocktails, food, kids, a good time and a trampoline. My wife had always been concerned about our kids playing on the trampoline and she watched like a hawk. I was never concerned, what could happen?

Later in the evening another dad and myself challenged each other to do flips on the trampoline, seemes like a good idea at the time. He went first - a whimpy little flip. I went second. My flip was MUCH bigger, his landing was better. It didn't look bad, I landed in the middle of the mat. I just over rotated and landed on my chest and apparently my neck took most of the weight of my body. I told them I needed help. I felt like I was floating, I didn't know where my arms and legs were, I thought somehow they were hanging over the edge or something because I couldn't move. Initially, they all laughed at me. They realized pretty quickly though something was wrong and called 911.

The wife had my kids taken to a neighbors so they wouldn't see the ambulance. Three 200 lb. paramedics tried to stabilize me on a trampoline, quite a sight. I was life flighted to Arrowhead Medical Center. I believe I was given MP on the flight over within 30 minutes of my injury, very lucky.

Upon arrival in the ER, I was told the news with my wife. I broke C5/6 and at the time was thought to be complete. I had nothing from the neck down. I asked what the chances for recovery were. I was told "slim". They told myself, my wife, my friends and familiy I would likely never walk again on that first night.

The next day I was put in traction for decompression. I actually heard the bones popping when they put on the halo. It must of released some pressure from the spine because I started with a little movement in my right arm, very slight but it was progress. They decided to have surgery that night, approx. 24 hours after the injury taking bone from my hip and fusing my neck. I was told the surgery would likely make the movement worse before it got better. I had horrible nightmares coming out of the surgery. It sucked big time. Luckily again the surgery actually improved my movement. I spent a week or so at the hospital before being transferred to Casa Colina rehab. I had a very bad bed sore on the back of my head and had bowel infections which caused high fevers and exceptionally high white blood cell counts. It got pretty dicey a few times.

Almost daily after my injury I made some progress or improvements. It was always very small but it was consistent. My right side came back first. My right arm and then my leg. Within a couple weaks I had movement and sensation in all four limbs - it wasn't normal or strong but I could move. My therapists were obviously encouraged and I worked very hard. Thay had my trying to walk with the bars and suuport within my first couple weeks there. I graduated to a walker and then a cane during my 4 weeks. I walked out of rehab with a cane about 5 weeks after my injury.

Today I am about 18 months post and I am still recovering and improving. No one would know I was hurt unless I tell them. I have a few issues but they are minor. My left hand is functional but not perfect. My sensation on my lower right side doesn't sense hot/cold and pain well and right side is still slightly stronger than my left.

I asked this board when I was about 6 months post, "Is 100% recovery possible?". Well I'm still not sure. I'm getting into 98% range and still working.

The reason I posted all this is so that newer injuries know that recovery is possible despite what the doctors may tell you. I frequent this sight still to learn and to offer some hope to people who may be looking for it like I was. I'm no miracle and I don't suspect devine intervention. I was lucky and I worked my ass off. Even when the chances are "slim", don't give up...

[Shannon]

When I was 8 years old, I was riding in the back of a station wagon, without a seatbelt. We stopped for a stop sign, but the drunk driver behind us did not stop. I was thrown out of the car, along with my two friends. Both of my friends died. I'm a T4/5 para complete. A few days after the accident, both of my parents were in a different hospital and my aunt was looking out for me. She asked my doctor if I'd ever walk again. He laughed at her and said, "She'll be lucky if she ever gets out of bed. (Keep in mind this was 1978, and obviously an idiot doctor.) I guess that was when they decided to transfer me to a children's hospital.

I was a very shy kid before the accident, and became even more shy after the accident. I had a really difficult time in the hospital and growing up in a chair,especially my teenage years. I think my shyness is what made it so difficult.

The most important thing to me when I was in the hospital, was when volunteers would bring in their pets for us to pet and play with. I've always been a huge animal lover, and it was very theraputic for me.

Now I'm a 32 year old single mom of 6. Okay, only one of them is human. 4 of them are cats, and one is a puppy. I'm currently training the puppy to be a therapy dog so that I can take him to the Children's Hospital.

If you have a young child who has a SCI, my best advice to you would be to not act like it is the end of the world. Everyone I knew felt so horrible for me and it made me feel so bad. Yeah, I was going to be in a wheelchair for the rest of my life, but I was still me. I couldn't understand why they weren't thrilled that I was still alive, and still myself, except my legs didn't work. My grandfather wouldn't even come to see me in the hospital because it was too painful for him to see "his little girl" hurt so badly. When I was allowed to leave the hospital for a couple of hours, my parents took me to my grandparents house. He took one look at me and started crying like a baby. That was really hard for me.

My adult life has been very good. I've had bad times, but who hasn't? It's been 24 years since my accident and the teenage years were no doubt the hardest for me.

I guess my experience is a little different. I had a spinal stroke (ishemia). I woke up about 3:30 am on August 17 with an horrible backache. I took Aleve and tried some stretching to aleviate the pain. I went back to sleep (or passed out I'm not sure which). I woke up about 4 hours later and went to the bathroom. I couldn't go and I noticed my right foot wasn't working properly. The toes were curled under like someone who had a cerebral stroke would be. I called my physician and was told to go to urgent care. When I saw the urgent care doctor and told him I couldn't go to the bathroom, he sent me over to the ER.

When I got there, the paged the neurologist on call. He did a pin prick test. Everything below my breast felt dull. I could feel just not pain.

As the day progressed I got worse. I went into the hospital walking, but by that evening I couldn't move anything below my waist. It was very bizarre to be able to feel my feet and legs yet not be able to move them. It took about 5 days to get a definitive diagnosis. The had to rule out MS, and myletis. I think it even took a few days for the injury to appear on the MRI.

Anyway, I'm a t 5-6 incomplete. The first 3 weeks in rehab I couldn't move a thing, but it movement started coming back slowing. First I could wiggle a toe then a knee. Now 7 months post injury, I'm starting to stand independently (although I still have balance issues). I can walk VERY short distances with a walker.

My improvement has been steady albeit it slower than I'd like.

My advice to new SCIs is to make your recovery the focus of your life. Learn as much as you can about your injury.


Now I have a question. Is there anyone else out there with a not traumatic spinal cord injury????? How is your recovery going?

[tbdeaux]

PATTI,

My non-traumatic injury was so similar to yours it's scary. I also woke up at 3:00 a.m. with severe pains across my shoulders and neck and the backs of my arms had gone numb. I took 5 aspirins and later Tylox. I went to the E.R. at 7:00 a.m. and they took x-rays and CT scans. The CT showed I had 2 severely herniated discs in the C5-C6 region. I was released from the hospital under heavy medication for the pain and was scheduled for a MRI the next day. Upon arriving home, I was still able to walk. I walked from my car to my bedroom and went to sleep. A few hours later I woke up and realized that I was paralyzed from the chest down. EMS was called and I was brought back to the ER. Things happened quickly from then on (so I was told, because I was out from all the pain meds given that a.m.). An MRI was performed revealing 2 herniated discs and a third that had fragmented cutting the blood supply and oxygen from the spinal cord. Emergency surgery was performed and C5-T1 was fused. I spent a couple of weeks in the hospital and then 6 more at T.I.R.R in Houston. I am now 10 months post injury and have regained use of my hands and arms but am still paralyzed from the chest down. I have regained some feeling in my lower extremities and as of today have only been able to move my little toe on my right foot. I have a standing frame, a motorized leg therapy machine and work out with weights a couple of times a week.

I'm glad to hear of your progression and praying that God will continue mine. Keep up the hard work!

Chuck

[southerncaliboy]

I was hit by a car on the freeway on my motorcycle the car was doing 100 mph .I was taken to the e.r. and stayed under heat lamps for 2 weeks then on to rancho for 6 months for rehab and spinal surgery it was a hit and run too

My little brother was in a car accident on his way home from his senior trip to Mexico last Thursady. He broke his 11th vertebra and had back surgery to take the pressure off of his spinal cord. Apparently, his spinal cord was pinched/stretched. I believe he was given the steroid that is imperative to receive. He was air-evacuated from just outside of Mexico to Phoenix, Arizona. His surgery was approximately 20 hours later, the next day.

It is now eight days post injury and he has not regained feeling in his legs. He was moved from the hospital to the rehab center two days ago. He began his OT and PT today.

The doctor is not the most optimistic person to talk to. That is why I feel very blessed to have found this incredible message board. I read each and every one of the posted messages and found such hope and inspiration in them. Praise God for such a forum!

My little brother is a senior in high school who recently helped his basketball team win the state championship. He is an athelete and a very positive individual. My family feels very blessed that he is alive and here with us today.

As any person who has experienced what he is experiencing (and their family members), he remains hopeful that he will recover fully and will walk to his graduation. Is this crazy? We will never lose faith.

Thank you for hearing me. God Bless.

[duramater]

Big Sister 32,

No hope is ever wasted. Please assure your family that our hopes for your brother's recovery join with yours.

Best Wishes,

Mary

...and she lived happily ever after...

Mary,

Thank you for your reply and kind words of encouragement. I appreciate your support.

Yvette
Gilbert, Arizona

[Chris Chappell]

Big Sister 32.

Keep asking questions in the various forums or try a "search" to find previously written threads that may be useful.

Right now everything's moving at a million miles an hour with information overload. It's normal. http://sci.rutgers.edu/forum/images/smilies/smile.gif

Hang in there we're with you. And yes, anything is possible! Stay strong and positive!

God Bless.

Peace.

[~Patrick~]

Big Sister 32, I am t-10,11,12. Please e-mail me so we can talk. pgantz3968@hotmail.com

"Often our suffering or the suffering of others blinds us to the reality that the sovereign God is working His own good purposes through a fallen world"

[kate]

Good Lord, eight days! It feels like a year, I know, but in terms of what will eventually happen to your brother, it's nothing. Please don't believe it when somebody gives you a timeline. I know of a woman who broke her back and no movement for more than two months--three years later, she walks around and even skis . . . our story:

Bruce broke c-6 high up on the side of a mountain two years ago. Immediate result: no movement or sensation below his nipple line.

1st prediction: No recovery, ever. That's what they said to me, but I never repeated it to him. The next morning he had sensation almost everywhere. (He got MP in the helicopter about an hour after he fell, thanks to Dr Y and all the people who worked to get that drug tested and into the market!)

2nd prediction: Okay, after 6 weeks he'll be about as good as he'll ever get. At 6 weeks he had a few muscle groups in his left leg--no abs, no back muscles, nothing at all in his right side. He could move his toes on his left foot, and if you put your hand on his quad, you could feel it flex.

3rd prediction: Okay, he probably has enough to be independent, but still no point in putting him in a standing frame, or even think about walking. This was at discharge, almost 3 months after the accident. He first sat up unassisted on father's day, which was, like, 14 weeks after he fell.

4th prediction: (A real PT at long last!!!) Okay, he'll have to work like hell, but it should be possible to get him on his feet, walking in parallel bars, wearing braces, within 3 months. And that's exactly what happened.

Today: He caths maybe twice a day, and, as he says, can now "stand up and pee on a bush like a man!" He does a sort of modified BP; sometimes things work in the old way and sometimes he gives it a little help. He walks with no braces, usually behind a walker but sometimes with those "polio" crutches, and BIG NEWS is just starting to learn how to manage with just a cane. Scary to watch . . . also, he can go up and down stairs if there is a sturdy rail AND he has a crutch or his walker to stabilize him.

DO NOT listen to anybody who thinks they know what is possible. They just might be full of shit!

Dr. Young, by the way, I would have given anything to have this thread about two years ago. I couldn't find anybody anywhere with firsthand experience. What a wonderful idea!

http://sci.rutgers.edu/forum/images/smilies/smile.gif

[dogger]

Big Sister , i am a C5/6 quad , who walks [ i have never owned a wheelchair . up until 3 months post i was told if i was lucky i may be able to use a manual chair , drive an adapted car etc . i live by myself and own/run a 20,000 acre sheep station . i am still getting small amounts of sensation return . i was 12 years post yesterday .

thank you
dogger

every day i wake up is a good one .

[november17rain]

hi dogger
xmas 2002 i was n a car accident resulting in a c6 c7 incomplete sci.i'm now 3mnths post and have return to t-12. i feel my legs. would love to talk to u. by the way, i bruised my cord. plz reply or email me at spinderellanov@hotmail.com. any other walking quads plzzz get in touch w/ me.. ty Originally posted by dogger:

Big Sister , i am a C5/6 quad , who walks [ i have never owned a wheelchair . up until 3 months post i was told if i was lucky i may be able to use a manual chair , drive an adapted car etc . i live by myself and own/run a 20,000 acre sheep station . i am still getting small amounts of sensation return . i was 12 years post yesterday .

thank you
dogger

every day i wake up is a good one .

Thank you all for giving me hope that the doctors understandably fail to give. Your stories are truly inspirational regardless of the outcome.

It is now sixteen days since my little brother was in his accident. There is still no feeling in his legs. My family remains hopeful that he will recovery fully. I share your stories with them.

Dogger, I am particularly interested in your story. It is truly a miraculous story you tell. Thank you for sharing it. There are others who have shared stories that give hope to those experiencing acute spinal cord injuries.

Any other relevant information anyone can give would be greatly appreciated.

Thank you all and God Bless.

[Sci Mom]

On March 31st (same as Dogger) 1999, my 18-year-old daughter was driving to school. She stopped to pick up a friend, which she felt made her late for school. She decided to pass a slow-moving van, and lost control of the car when she went back into her lane. She injured her spine at T11/T12 plus other broken bones. Her friend scraped her forehead and went back to school that afternoon. Brianna didn't go back until June 6th, for her graduation.

She was airlifted to the University of Michigan in Ann Arbor, a model SCI center. The neurosurgeon on call happens to be one of the best around. He examined her and told us that her break was one of the worst he had ever seen. He told us then that she was paralyzed from the waist down, and that she would probably never recover any function or sensation.

It's been four years now. He was right. I don't mean to sound bleak, but you must also know that sometimes the doctors are right. Hope is a wonderful thing, but I believe that as far as spinal injuries are concerned...it's mostly luck.

I wish you, Big Sister 32, and your brother all the luck in the world.

Vicky

Its nice (??) to hear a similar story.

I don't know about you, but sometimes I wonder if it could happen again.

email me if you'd like at pparnell@aol.com

[wolflarson]

This is a first-person perspective based on my experiences...bottom-line is get counselling early for spouses that are affected by an SCI. Hope it's useful to someone out there.

===

Has it really been three years already? Three years of toil and struggle to reclaim what remains of my former life. At times it seems like it was only yesterday that found me walking down a stony path in the forest next to our new house, my children in tow, lock step behind me, moaning about sore legs and feet. Me the drill sergeant trying to muster up the troops for the long trek through the woods to the promised picnic site, the troops being two battle-weary girls under four years of age beseeching me for their lunch.
A few short weeks later and there I was lying in the hospital bed, retracing in my mind every one of my steps in the darkness a thousand times, wondering how I had been so careless as to fall off an eighty-foot cliff at night. I had hiked that trail more than a dozen times, both in the day and at night, so mostly I was in bewilderment at my stupidity even with the morphine drip coursing through my veins.

I remember the intern saying something about a fracture/dislocate at T-11, spinal fusion, rods, squished spinal cord. Too much for me to absorb so I thought of my wife and kids. They would be with me still. We could still live together, hug each other, laugh together, console one another. Couldn't we?

Where were they? I wish they were here now. And then they were, running all over the room, asking a million questions, jumping on the bed, looking out the window, asking if they could eat my leftover food. I was in awe. To the kids, this was all a temporary respite from day-to-day life. Dad would be out in a matter of days, running with them, throwing them over his shoulder so they could ride high, wrestling with them. All would be back to normal.
Then a few days after, I was lying in the hospital bed alone, staring intermittently out the window into the park below. It was a sunny day in late December and children were clambering all over the swings. I glanced back down at my legs as I had forty times in the last hour. They were still red and dormant, glistening a little but when I reached down to touch them, they belonged to someone else. How strange. How will I ever get used to that?

Over the last three years, that notion has been put to the test many times and each time an inch of progress was made somehow.
Prior to my injury, I lived anything but a sedentary lifestyle. I traveled often for business, exercised regularly and loved hiking, camping and the great outdoors. Immediately following my injury my thoughts revolved around all the things that I could no longer do. Like my new mountain bike sitting in the garage, waiting silently to be ridden.
Looking back now, lying in that hospital bed after my operation with Christmas a mere week and a half away was the hardest time of my life. While many tough roads lay ahead including some that I could never have imagined needing to travel, the first few weeks of realization were by far the hardest.

To cope, I thought constantly of my wife and kids. I tried to focus on the things we could still do together, the experiences we could still have. It was hard to envision but I had to try and dwell on the positives or I could feel myself sinking into depths of despair. I thought about the fact that I was alive. The miracle of it. Falling such a distance into a ravine of rocks and logs and surviving. I thought about brain injuries and reveled in the fact that mine was still intact. (This is a matter of debate in some quarters though!)

I went at my rehab with a vengeance, starting it a few short days after my surgery. The sooner, the better. I wanted to get out of the hospital and home to my wife and kids. Back to work running my small business. In short, I wanted my old life back. As much of it as I could still have. I was home for a few days over Christmas and had another subdued stay home over New Years. I remember having a hard time adjusting to my perceived inactivity. All around me, people were ambling about getting themselves drinks or food, cleaning up, preparing meals etc. I just sat there and watched them all like a bump on a log. For someone used to hyperactivity as a normal course of affairs, this kind of inactivity was hard to take.
About three months after my accident, I was discharged. Out of rehab and back to the real world from whence I had come. I had been coming home every Friday starting a couple of weeks after the accident. On Sundays, my wife and kids would bring me back. This was the worst time for me - to see them all walk out the door of my room, listening to the excited chatter of those two little girls as they shuffled down the hall. They were always sure to tuck Dad into bed for the night before they left. I lay there listening to their voices receding into the distance, lying there prone again, my mind paralyzed in thought as much as my body was. At times like this, TV became a welcome respite.

Over the next few months, it started becoming increasingly apparent that my wife was having difficulties coping with the massive change that had been imposed upon us. While I was out exercising, researching new equipment to use, running my business and generally exploring my new world and what I could do with it, my wife was retreating further and further into a morass of despair.

Over time the situation did not improve with her escapist tendencies becoming more frequent and pronounced. I grew hostile and impatient with this ongoing rejection of what I had become. It slowly dawned on me that during rehab a lot of focus was put on me. My wife was told repeatedly that she had to be strong for us both, that she had to help me cope with my new challenges, that she had to "be there" for me like at no other time in our lives. I now think about this and while all those who made those statements had the best intentions and were sincere in their advice, it clearly missed the mark in terms of acknowledging her own feelings about such profound change.
Now some two and a half years later, the net effect is that our problems have spiraled massively out of control. It seems fairly evident to all concerned that the marriage cannot be salvaged. Why did this happen? Could it have been prevented? These are questions I ask myself every day. What could I have done different? I found that the more I sensed rejection from my wife the more I rebelled against it. It became my new focus. I would alternate between consoling her for a few days and when I saw nothing changing, I would lash out and ask for a divorce. She refused to consider counseling and as a result I felt she wasn't trying. For her though, counseling was for weak people who couldn't cope. We were strong individuals and had a strong relationship that had already survived numerous hardships. Or so we thought.
I felt I had moved on very quickly re-establishing my life the best way I could. I was active in numerous physical activities and was seeking to increase the number of things I could do. I bought a hand-bike so we could all go riding together and an all-terrain chair so we could go in the forest or go camping together. Skiing was next on the list.

Everything I did was geared to assisting me to get back to my family and be able to participate with them in whatever we chose to do. I became deeply resentful that my wife was not joining me on this new journey. It became increasingly apparent that I was going to be going it alone without her support and re-assurance. This caused me to falter. I started to lose hope. I started to experience feelings of futility. I started thinking to myself, "Well, if she doesn't want me, then no woman will". I am doomed to a life of celibacy, living alone in some squalid apartment, everything lost, waiting for my next disability payment.

I thought of Christopher Reeve and Dana and how they seemed to be coping so much better than we were and yet his functional loss was so much greater than mine. Why could my wife not be more like Dana? What was I doing that was not supportive in helping her? Some of my actions were clearly not helpful. Feeling alienated and relegated to the dust heap as far as a sexual being made me angry. In my anger, I lashed out, asked for a divorce, eventually moving downstairs to the basement when she became pre-occupied nightly with the internet. Her escapism just got worse. The more I fought back against her rejection the more rejection I experienced and the more she retreated into her other new world.

After two years of badgering on my part, my wife finally agreed to counseling. By this time however, things had gone past the point of salvage. Nothing more could be done. Too much pain. Too much hurt inflicted by both parties. We had completely lost hope.

So could any of this have been avoided? Perhaps with counseling early on during rehab and thereafter, we may have been able to address the deep feelings of loss that my wife was experiencing. Clearly, I had chosen to see my new life as a glass half-full whereas to her, that same glass was approaching bone-dry.

Each of us is unique. We are the sum total of all the cumulative experiences we have had in our life thus far. This 'pre-programming' forges our identities to such an extent that we react according to its dictates. My wife's conditioning was different than mine. This does not make her a bad person. It does not make her malevolent, evil or selfish. It simply is how she was pre-programmed to react to this type of situation. In fact, I don't know exactly how I would have reacted were the tables turned and it was her in the wheelchair. Would I have reacted the same way? While I like to think not, we will never know the answer to that question.

Three years later and I am, once again, anxiously waiting to start yet another new life. A new life as a single disabled person. A divorced father of two beautiful little girls. Is it sad? You bet. But somehow I still have hope that my life will get better. I know it will not happen by itself. I know that whether it actually gets better or not is largely in my control. I have the power to enforce positive change in my life. The power rests in my mind. My mind is what will determine for me what my life is to become. I am not a complete victim of circumstance, blown hither and thither by forces beyond my control. I have learned that if I am positive in my own life, if I exemplify that in my actions and in how I live, others will respond in kind.

It is in this way that I believe my life will improve. By being positive yet realistic in what I can achieve and in the level of happiness I can attain, others will join me in sharing the happiness that life can bring to us all. I will not be rejoicing alone. We will share our triumphs and sorrows together.

Each of us has goals and objectives that we seek to have re-affirmed by those around us. In this journey, we are stronger together, through friends and family than we are on our own.

[marmalady]

Dear Wolf, Thank you for your thoughtful and insightful post; you brought tears to my eyes. I am so sorry your marriage didn't last. None of us ever knows how we'll react in times of stress, especially the kind of stress SCI puts on a family. Your experience, unfortunately, is repeated over and over again, and is testament to the fact that families and spouses need emotional care just as much as the newly injured need physical care.

My hope for you is a new life that's productive, and loving, and knowing that you have a family here forever (even tho we're a bit dysfunctional at times! http://sci.rutgers.edu/forum/images/smilies/wink.gif )

To all family members of newly injured loved ones; take care of yourselves, and take care of your relationships; find new ways to lean on each other, and new ways to relate. Get help as soon as you can; the rehab psych counselors will also talk with family members. Even if you think you're strong enough to 'handle' things, having someone to talk to is a help. Join in on our 'Caregivers' forum, for support and just to have a place to blow off steam. We're all here for each other.

_____________
Tough times don't last - tough people do.

[wolflarson]

Dear Marmalady,

Thank you for your words of encouragement regarding my little story. Yes, it's tough but as you say, there are always positives in every scenario, you just have to stay focused on looking for them. I also echo your sentiment about thinking you are 'strong enough to handle things'. That's really what happened here in that my wife was sure she and us together were strong enough to not require counselling but what is counselling other than a sounding board to vent frustrations and fears and concerns and try to deal with them openly rather than trying to ignore them or hide them away.

Take Care,

[Wise Young]

wolflarson, thank you very much for sharing your experience. It has been with me now for several days, so that I can digest and understand your experience. It touched me deeply.

Spinal cord injury has broken up many families, not only between the spouse and the injured persons but between parents, and even amongst other family members and friends. The reasons for breakup are of course extremely varied. In some, spinal cord injury may be the straw that broke the camel's back. In others, it may be the inability of the spouse or the person to accept the change or stress.

Spinal cord injury also draws many families together. One common factor that I have observed in such cases is strong support from multiple family members, tolerance, understanding, and community. When parents are involved, it is important for the mother and father to take turns being the "strong" one in the family so that the other can "let go". When I see a spouse or a parent who is bearing the burden in isolation, that is worrisome.

Counseling is important because it allows people to say what is on their minds without damaging relationships. Hurtful words, once spoken, are like bullets from a gun. They cannot be retracted. It is better to shoot on a firing range. Certainly friends and other family members can serve the role at times but they too have a emotional stake in the spinal cord injury.

Finally, I think that we do not realize the importance of hope for the family. One of the most difficult aspects of spinal cord injury for a family member is the sense of helplessness. We receive hundreds of phone calls and emails from family members who want to do something. The sense of helplessness is devastating.

Wise.

[dunwawry]

I have been meaning to add my story, and since I really should be grading projects (and don't want to), I will do it now.

I am 45 and female. Seven years ago, I had horses that I rode and trained. Horses had been my passion since I was 10, and my mother relented and sent me to a summer program through the community park district (boy did she come to regret that, she hated horses, and after that I was addicted). One day I was riding a young and very athletic, but difficult horse that I had, he threw me, and when I hit the ground, I had this bizarre buzzing sensation coursing through my entire body except my head and upper neck. I could feel or move nothing except my head. This was exactly 10 days after Reeve's accident, and he was all I could think about, that I was just like him (I was an RN). Thank God I was breathing though. My 10 year old daughter was there and she knew CPR because I taught classes, but I would have hated to put her in that position, but she did yell at the head trainer not to move me or remove my helmet, kids are amazing.

I spent a week in acute care on IV steroids. I had a C3/C4 incomplete injury, no fractures, but bruising and swelling along with congenital stenosis, central cord syndrome. MY NS said that given my MRI, they never would have allowed me to play pro football, LOL. I remember little of that week, although friends told me I appeared alert and coherent. I was then transferred to a rehab facility for the next seven weeks.

I took my first steps at 10 days post injury. Return gradually came up through my legs to my trunk and then down my arms. It would be another six weeks before I had any finger movement. Bladder function returned two days before discharge. I worked my butt off in PT and OT, and whenever somebody refused their slot, they would just pencil me in for additional time. Original predictions were that I would never leave a wheelchair. Today I walk unassisted, but have significant problems with spasticity, balance, and manual dexterity. Bowel/bladder function is not "normal", I still need stool softeners or I can't go, but also have accidents at both ends. At time of discharge, I was still very weak and had almost no hand function. I came home, barely able to take care of myself, to two children, 6 and 11, a house to run, and a husband who refused to offer ANY help whatsoever. His contribution was his paycheck, period, as it always had been.

My marriage did not survive although it lasted another six years. The fallout from the accident was the straw that broke the camel's back so to speak. I applied for and received disability, and went back to school through vocational rehab. I graduated with a second degree in computer science at the top of my class. I now teach part time at the local community college. Fatigue is my biggest problem.

Today, people look at me like I am crazy when I say that my accident was the best thing that ever happened to me. Emotionally I am a much stronger person, mostly because of the adversities I have been able to conquer. I discovered that I had never given myself nearly the credit I deserved. I have far more courage and self-confidence. I also learned how to ask for help from friends. I got out of a bad marriage, oddly enough I am not sure that I would have had the courage to leave otherwise, even though now it is financially much more of a struggle because I can't seem to manage more than 20 hrs/week (along with single parenthood) due to the fatigue. I have a new career, one that I like much better. I have become closer to my family of origin, I just wish they didn't all live so far away. My biggest regret is that I can no longer ride and handle horses, and that I do grieve, that part of my life I truly loved. My oldest daughter is now an excellent rider, and that is bittersweet for me. But I have come to believe that out of pain, comes growth. And boy, have I ever grown up. Thanks for listening.

[wolflarson]

Wise,

Thank you for your comments regarding my little story. It is unfortunate after reading Dunwawry story how similar these experiences seem to be. I am sure each has its' own very unique set of circumstances and personalities but the end result always seems to be the same. I agree with what you said though about it bring families and people together as much as it breaks them apart. The whole experience of SCI has brought me much closer to my parents and my sister and certain friends. I have found that some people around me actually seem to draw strength and resolve in the struggles they are having in their own life when they witness how I deal with my own turmoils. For instance, my father had a mild stroke six months after my accident and he recovered fully in about three months. In talking with my sister he credited the speed of recovery partially on his motivation through the rehab process which he says he got from witnessing my own approach to rehab. What a great gift for me to give back to my Dad, to give him encouragement and motivation in his own ordeal. That was really big for me and as a result it has brought us alot closer,

Wolf

[macska]

on september 28th/2002 my 17 years old son jordan was shot and robbed.
the bullet severed his spinal cord at the T4-5 level.
he was treated at sunnybrook and was hospitalized there for 7 weeks and after spent another 10 weeks at lyndhurst sci rehab in toronto.
that sunday morning and the following 72 hours after i arrived to the hospital are kind of blurry. i remember as soon as i walked in to the cicu unit there were this doctors telling me about the extend of his injuries how he might not survive and if he makes it thru the day he might still loose one of his lungs, since the bullet also went thru his right lung and of course the fact that he is paralized from his chest down and he will never walk again.
he was concius all the time and all he wanted is for me to hold his hand. i remember looking at him as he was all swollen and tubes sticking out all over and i kept on thinking "how could someone do this to my baby".
i could feel his bed shaking from every heart beat as he was fighting for his life.
time passed,he had gotten better and as he became more alert the severety started to sink in. we spent many days crying and i was left with the task of trying to explain, comfort and assure that his life is not over, i was also falling apart, but at the same time i also needed to convince my self of the same.
it has been almost 8 moths and as his mother i honestly cannot say that i will ever be better or will come to terms with what happened to him.
i guess(hope)i will be able to do so to a certain degree once i see that he has found peace within and happines.
for a while he/we kept on hoping that the doctors maybe wrong,i would have been happy with incomplete from complete. he often said to me that he don't so much care about not being able to walk, but he just wishes he could feel his body again.
i guess life goes on, we do what we have to and never give up hope that some day there will be no more politics and greed in the way of spinal cord regeneration and that someone out there will come up with those missing links that prevents the full recovery of all sci injuries.

[Brian S]

I had a bicycle accident on October 1, 2001 which resulted in a C2/C3 spinal cord injury. During the summer of 2002, I started writing about my experiences. Rather then posting it here (it's quite long), go to this page on my web site: "My First Year (http://briansternberg.com/first-year.html)".

It's very enlightening to read through the stories in this thread. I wish I had known about this site earlier on in my injury. My thanks go out to Wise and all the moderators and members that make this site such a success.

[SCI-Nurse]

s2klisa, I am going to move your post to a separate thread. I am afraid it will be lost attached to this message. You can find your new thread here (http://carecure.org/forum/showthread.php?t=37288).

(KLD)

[This message was edited by Wise Young on 06-15-03 at 03:31 PM.]

[cauda equina]

December 2000 I had a car accident that caused a burst fracture at L1. This resulted in spinal fusion and horrific pain that took over a year of Oxicontin to help deal with.

With almost every spinal cord injury there is loss of some kind. Luckily I regained, mostly, the use of my legs, bladder and bowels, but suffered an even greater loss, my children.

As the marriage goes, so goes the divorce, so say the attorneys. My marriage was an angry, resentful one during its 21 years. Anger from her in step-down, during the hospital stay, and the months at home recovering was too much. I hit black ice. But it was just another example to her of how I screwed up again.

Separated for almost a year now, and the necessity of using lawyers to hopefully get things settled, we don't speak. She still sends hateful, insulting emails trying to drive me away. I send the kids a card and she gets upset, there is no other way to tell them I still love and miss them. She said when I left she never wanted to see my face again.

Her poison worked on the kids. She's still trying to convince my side of the family. She hasn't spoken to her father and all but one of 7 siblings in over 3 years over hard feelings.

Finding the gracious people here a month after my injury got me through the worst time of my life. Thank you! Sorry to ramble.

[Cris]

This is a useful and well written Spinal Cord Injury manual. I think anyone with or around SCI wll find a wealth of knowledge here.

http://calder.med.miami.edu/pointis/handbook.html

[QuintenvanG]

A message from Europe. I suffer (man 34 years) from a spinal cord injury since May 2002. When I was playing with my little son I suddenly got a very heavy pain in the back. To make a long story short: after five hours I was paralysed on the level of T8. The doctors in my town couldn't find the cause so I went to a big universtity hospital. Finally they told me that I had a spinal cord. I had never been ill before and didn't visit my doctor in de past three years! I'm still wondering what's the cause of this stroke and if it can effect my son or can happen to me again?
I was three months in a recovery center. Recently I moved with my family to a bungalow so everything is much easier. I'm trying to go to work but it's still very difficult.

[SCI-Nurse]

Welcome to the Care/Cure. This is a good place to get information and share with others. We have a number of members who have their SCI due to vascular problems.

In young peopl, the most common causes of vascular non-traumatic spinal cord injury are AVMs (arteriovenous malformations) of the cord, and collegen emboli of the cord. The latter is most common in weight lifters or after very vigorous physical activity. T8 is a common area of vascular "watershed" injuries to the cord. Did your doctors do any surgery or tests to determine the cause of your spinal cord stroke?

Dr. Young has written an excellent summary of the circulation of the cord that you may want to review:

Circulation of the spinal cord (http://carecure.rutgers.edu/spinewire/ARTICLES/scischemia/scischemia.html)

(KLD)

[QuintenvanG]

Dear SCI Nurse

Thank your for your quick response. I'm now printing the article from doctor Wise. Your question about surgery or tests: I had several MRI-scans even one of the blood-vessels in my spinal cord. After that I was told that I had a spinal stroke. On the scan you can see that the spinal cord is interrupted. The cause was never clear. My bloodtests are allright and they think that it will never happen again. I'm taking a medicine that prevents my blood for becoming thick. But what I told you is that I'm worried for my son and myself. Can it happen to him or can it happen again to me?

[SCI-Nurse]

Most causes of spinal cord infarctions are not hereditary, and it is unusual to have more than one AVM (if this is the cause). Did the doctors ever say you had an AVM? Without more information it is difficult to give you any answers. What did the doctors say about recurrance or risks for your son?

Dr. Young may be able to add some more information here when he is available again.

(KLD)

[teesieme]

Big Sis, I haven't finished reading through the posts but am very happy to see posts with personal input as such, because my son too was injured just over a year ago with T5 & T6 burst fractures with a T4 contusion that took away any sensation/movement and we were told there was not going to be any chance. Ever. My reply was we will see with time...

A few days later sensation began its return, and continued down for the next month. So he was not complete after all, still they said after a month, no movement with crude sensation and it would be about it. But one day I noticed into the second month how he seemed to "shimmy" his way back up against the bed through his hips. It took some convincing, even on his part, that something was happening there. It was.

To make a long story short, the sensation level has still been improving, the movement that so many said wasn't really there in the back, the abs, the hips is improving still, he is very independent in his chair and can do so much even with rods in his back, he bends to the floor easily, etc. He has attended a bio-feedback program in Florida, and guess what, he does have something getting through even down into his calves and even though he can't move his toes yet, he is slowly but surely walking in leg braces using his hips and thighs with a walker to steady himself. Using bio-feedback and having the most wonderful therapists, he has built up his muscle control throughout his T zone to about 75% usage and has improved weekly elsewhere too. There is hope, we will see with time and that is just it right there is it not? Time.

I wish for people newly injured to realize the reality that things may never be the same, that yes, learning to live again from a chair is a possibility for years to come, BUT from the start, follow through with self care and work whatever doesn't move no matter what anyone says, no matter if it takes years for return, so that if/when it does, they are use to some form of movement, what would it hurt? And I know personally of a few who have had return after four, five years too. I know there is a balance one must find to continue living while pursueing the possibilities, I hate how limited things are for many to work out with equipment, programs, what have you but we searched and applied what we felt we could do ourselves at home, such as detailed roms, not just the basics, e-stim, swimming, jacuzzi tub for circulation, standing frame, etc. Then pursuing therapy programs our insurance would cover with a wonderful physicians help and faith that just maybe...

I await the day when my son is able to walk even with leg braces and what have you steadily into the emergency room and hope a certain someone is there to see him and learns just how wrong she was, besides one pt who would not listen to me about our wanting to use therapies she felt were of no use to even apply...

I feel that any sign of improvement, sensation or movement, is still a sign of continued healing. One never does truly know after all and has no right to ever say never.

[This message was edited by teesieme on 06-17-03 at 01:05 AM.]

[waters3]

Well here is another new injury experience (unfortunately my son, 20 years old). To make a long story short the nightmare began March 28, 2003 when my son was in a car accident and now has C4,5,6. It was explained to us as a spinal cord contusion and also wait and see; but sometimes we get the odds are...... But it seems as if things are getting worse. This might be kinda long. He had a trach because his windpipe was cut clean in half but there were no damages to any vocal chords or nerves affecting his speech. he was not on a vent for almost a month after being admitted into the hosp, only oxygenated over the trach and breathing on his own be it from his diaphram only. After being in ICU they transferred him upstairs to a reg hosp room. The first day there he had a plug and could not breath luckily the nurse was right there (they say) and oxygenated him immediately. He was transferred back down to ICU so they could keep a better eye on him. In about a day we noticed a hard lump on the side of his face. After an Xray they said his jaw was broken in 3 places (overlooked by any x-ray, scan, etc!). We had no way of knowing this until we saw the hard lump as he was was alert and mouthing words to us as usual up to the point of the x-ray. His jaw was re-broken and surgically aligned and then wired shut for 5 weeks! Well the wires have been off now for a month, but he is not able to form words basically his mouth just does not seem to work right. There is no head injury involved. After weeks of speech therapy we finally had a neurologist come in she assessed this: atrophy on the side of the face where the jaw was broken. And he probably will not be able to talk or eat again! She also stated that people with SCI do not regain any function whatsoever after the injury; basically what you see is what you get and you just work with what you have in rehab. I stated to her that I have spoken with people that had SCI and had regained some function and she had the attitude that "well you can believe what you want." should I get a second opinion. I had asked her if the jaw surgery could have caused damage and she said I was trying to look for somebody to blame and not realizing the injury itself. It seems that if you ask questions it is like pulling teeth for an explaination and a defensive attitude. I have about had it. I keep telling my son that things will get better as I hear this when I talk to caregivers and people with SCI now I maybe have to tell him this! It is breaking my heart to no end. Sorry to lay all this on you but I have had a bad day let alone all that my son has gone through. I have been involved in 2 other forums and now here is a new one, thanks. The other two are scigroups@yahoo.com and http://www.andylee.freeuk.com/ . If anybody would like to comment or have any info please feel free to reply or you can e-mail me directly at waters3@gbronline.com God Bless

Cindy Waters
Tampa, FL

[teesieme]

As I read on further now I see the sharing of experiences involves the relationships that are tested and tried by an injury as such. I just wanted to share that this has also been tough part of finding our way through things. Basically, I have an ex-husband who has blamed me for this, the first time in rehab., which I just let him say it as much as it hurt because he was hurting. Then the second time around, I pointed out the fact that yes, I co-signed for the dirt bike but he is the one who put the down payment on it and told him to get something bigger, NOT that I blame him though, and he has blamed me since. "His son was once very healthy and now uses a chair to get around..." Grrr, what an shmuck. My son will say that he would have gotten the bike one way or the other through graduation cards or what have the very next couple weeks...and that is very true. I don't blame myself, nor his father, nor my son, for he raced all his life and he loved it, and as much as we knew of the risks, we just never thought the first time around it would be something so severe. People would tell me through the years that if I couldn't afford for my son to race, why did I find a way and go without, why did I "spoil" him and it was tough to face those who would question my allowing my son to be in such a dangerous way, well, yes, now I wish I would have said no, but as my son would say, "Mom, if you would have never let me race, and would have made me wait until I was 18 and on my own, I would have gotten the bike and I would have had the same thing happen then and there, and I would have never ever really known nor lived my dream." And you know, he is still going to race his mud trucks and cars with some adjustments this summer. And his father is just the way he is. It is my son who has meant my world to me and always will. The friends who cannot find understanding, the family who turns away, yeah, it hurts and makes things really tough, and I hurt for my son, as this does not help in healing but then again it seems to make him even more determined too? I think someone should find information on the study of positive enviroments and support making a difference after all for those that are trying to recover and find their way from injuries and then one can show it to people who are and have been so selfish ~

[Sue Pendleton]

Radenack, I also had a spinal stroke although much higher at C3/4. Again, no cause was found just small area on the MRI signaling damage. I am rather surprised that you had an angiography done (it sounds like) since they rarely do those unlesss a lot of return has happened and an AVM is suspected and may be able to be corrected. At 34 years you should not worry about another stroke. But do not, my advice only, ever have an epidural for surgical reasons use regular anesthetics. Your son has no reason at all to worry. Spinal strokes are very rare and few have known causes. They are a very rare complication with epidural (spinal blocks) use in surgery, some in the thorasic area happen during open heart surgery due to prolonged cross clamping and those are becoming rarer as research into cardio-thorasic surgery improves. Oh, and there is some evidence that cocaine and epinephrine abuse can cause strokes of the spine but very little real proof more just reports from emergency rooms.

Do you have any feeling or movement below the injury site? I never lost touch sense or proppriosensation (where my limbs are). Over the past 11 years I have regained a lot of muscles from arms, legs and now stomach to where I can sit up from flat on my back. You may want to look for more information on non-traumatic SCIs and their causes at the following website. I believe they have a group in Denmark also:

http://www.myelitis.org/

Sue

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

well I was on spring break from college,and just bought a brand new motorcycle ,and was a victim of a hit,and run after doing rehab at rancho los amigos,and losing my home and all else I went through five years of depression drinking and two suicides.Then I met up with a friend from rehab,and he offered me a job at www.xtrememedical.com (http://www.xtrememedical.com) there I work with 27 other people in chairs it is like our own world here,and I dont even feel like I am in a chair. I play wheelchair sports football,basketball tennis,and football,and surf at the beach and do childrens sports camp.well I wont bore you kevin conrad

[QuintenvanG]

Hello SCI-nurse and Sue,

Thank you for your postings. This week I called the doctor at the university hospital, to get more information about my spinal stroke. She told me that I had no AVM; they thought about it, but couldn't find anything. The cause of my spinal stroke is still not clear. She also advised me to reach for more information in the United States (you know I'm from Europe), because in your country there's more expertise about SCI. Now I'm wondering: can it be helpful if I send a copy of my MRI-scans to your experts? Are there really more opportunities for me in the United States or can your recommend doctors, who are specialized in spinal strokes?
Hopefully my English is not too bad; I guess you'll know what I mean, although it's probably not for 100 percent correct.
Greetings, Radenack (if you want to send me I private e-mail, please let me know in this forum!)

Teesieme:

It has been some time since I've returned to this forum. I was pleasantly surprised to see that you responded to one of my postings.

I want you to know that I really appreciate your positive outlook. You sound as though you are taking the right approach to things. My family is extremely hopeful for recovery. At the same time we feel blessed to have my little brother here with us today (chair or no chair). God has a plan for all of us and you are right, we just have to wait and see with time how things will turn out.

My brother has been working diligently at a local rehabiliation facility in Arizona. This particular facility has been a God-send. It is called Brandon's Neuro Institute and it is located in Tempe, Arizoa. The therapists are great and there is a lot of hope there. My brother loves it there because he is able to work hard and has already seen what we consider improvements. He can now pedal a bike on his own for at least a half an hour, which is amazing considering he couldn't do it all before. Yesterday, he tried crawling. I hear he was able to do it (only slightly). Not bad for trying. At least he is given the opportunity to work on things that were ignored when he was in his inpatient therapy elsewhere.

Anyway, I want you to know that you are not alone. I'm sure you've guessed that since visiting numerous sites like this one.

As for your ex-husband, all of us have other issues we are dealing with that cause even greater pain than adjusting to something new. I'm sorry your ex-husband is giving you a difficult time. I've learned that spinal cord injuries affect everyone, not just the individual who was injured. People deal with things differently and unfortunately, your ex has chosen a hurtful way to deal with his pain. Your son sounds like he has a terrific attitude. The two of you can make this experience whatever you want it to be. Keep the positive attitudes and continue to have faith and hope for recovery. Life is not over it regardless of the outcome. However, having a goal and hoping for something great is healthy.

God bless you and your family. If you ever need some encouragement, feel free to email me at kiwis7@aol.com.

[Missourian]

Hello,
I'm sitting here at the keyboard rather dazed, bewildered, and emotionally distraught. I was notified on July 16th that my 21 yr. old son was in a car accident. We live in Missouri and he is in Tacoma, Wa. 3 days later we drove to visit him at the Rehab Center. I had not heard from my son in over a year and had not seen him in over two years. He was in the Navy and had gone AWOL after his ship (USS CARL VINSON pulled into port) I don't know which is worse, not knowing where your child is or seeing him for the first time as a paraplegia. Unfortunately, I did not have an opportunity to visit with a doctor. The staff at the Rehab center tried to explain the extent of his injuries, yet they too, had a hard time with the medical terminology. He has already had a UTI and is currently experiencing the 3rd stage of bed/pressure sores. I merely have a copy of notes the doctor took inwhich to understand his injuries. The identification reads as: 21 yr. old gentleman with a T4 ASIA A spinal cord injury, and traumatic brain injury after motor vehicle accident. Through my research on the web, I now understand A means complete. He is currently wearing a CTLSO. He has a complete spinal cord injury at the thoracic level. The accident happened 05/16/03. He had immediate surgery which consisted of decompressive laminectomy at T5-6. I was horrified to learn this and missed the opportunity to be by his bedside. He has some memory loss. My son stated that he lost our phone number and had been trying for several months before the accident to locate us. My pain is deep and I feel helpless while he is in another State. There is so much medical terminology on this report and I'm not sure where to go to understand the extent of his injuries or his prognosis. He will return to Harborview in Washington to get the brace off and then have more therapy. He will then return to the Rehab Center where no one his age lives. This is also a nursing home. I want to be involved as his biggest Advocate. He signed a release of information for me. Since I'm now back home in Missouri, the Rehab Center treats me rudely on the phone. I wasn't impressed with the Center or some of the caregivers. The pressure sores concern me. My son is still in denial and has had no consistent contact with a psychologist. Please, please tell me how to aggressively advocate for his needs. I understand his priority is the lowest on the totem pole as he is now State Funded and will be qualifying for Medicaid and SSI. I would like him to come back home to Missouri and research areas that can assist him, ie, community assisted living, group homes, ect. But first and foremost, I would sincerely like to understand the extent of his injuries and be able to understand his limitations. Thank you in advance for any help/suggestions.

[betheny]

Dear Missourrian-
First, I'm so sorry. That said, on to business. Read the first article found in the first link under the "welcome to Acute Spinal Cord Injury Forum" by Dr. Young. This is crucial info. I can't emphasize this enough. His pressure sores have to be healed, whatever that takes. They will be a weak link for him forever. If the staff at the rehab is rude, ask for their supervisor to report it-that is unacceptable. Don't be hostile, just strong. How bad is the brain injury? Can he advocate for himself? He should probably be moved closer to home if possible, in my opinion. At level T4, even complete, no group living situation should be necessary. With decent rehab, when he regains his health, a fully independent and fulfilling life should be possible. Don't despair, don't panic, dig in your heels. Panicking is his job-yours is to comfort and encourage. The fact that you found us tells me that you can do it. This is a NEW injury, SCI's take a while to stabilize. He will grow so much stronger with time. It's hard to explain. Stay in touch, OK?


You'd better get a big gun 'cause I'm not dead yet."
---The Bad Examples

[Wise Young]

Missourian, I answered you in another topic (click here) (http://carecure.org/forum/showpost.php?p=235419). Wise.

[AngelaandKC]

Missourian,

Sorry to hear about your situation. I just wanted to let you know that I went to Harborview initially after my injury and for rehab. It is a WONDERFUL place to be. My SCI doc, Dr Goldstein is the best. He is VERY patient and takes all the time you need to answer questions and followup on whatever you need.

If your son cannot go to Harborview, the University of Washington is also reknown.

My experiences after leaving Harborview while I was still in a TLSO was not so good. I went to a nursing home where in short, was abusive. I was lucky that I could advocate for myself and transfered to another facility.

Should your son have to go back to a nursing facility, I would HIGHLY recommend Mt St Vincent in Seattle.

Please feel free to contact me via email -removed-. I know this is hard for you because you are so far away. I would like to help in whatever way I can since I am in the Tacoma area and have gone through the system here.

Best wishes,
Angela

[Missourian]

I am very sorry if my posts seem out of order?
Angela, Wise, and Betheny....THANK YOU, THANK YOU, THANK YOU, for responding so quickly. I am in awe with the compassion and understanding from strangers who have connected through the empowerment of hope, determination, and education for those who have SCI or are dealing with SCI loved ones. My son was initially treated at Harborview where he received an immediate operation as explained in my first post. He was then transferred to Tacoma Rehab and Specialty for Rehab while wearing his CTLSO. My son desperately wants to go back to Harborview where he feels they know how to take care of him. Right now, Tacoma Rehab is just a resting place for him and it is at this place that I find my son's primary care being ignored, ie pressure sores, UTI. He goes back to Harborview Aug. 7th, I'm not sure how long he will stay, after he is done, they will transport him back to Tacoma Rehab. The staff has not informed him of this and I fear that he will be very angry should I be the one to mention this to him. Wise, your comments were "right on" with reference to his brain injury. He was thrown out of a convertible mustange (roof was up) and flew 20 feet before hitting the ground.The doctor note states: impaired sensation to pinprick in the right C5, C6, C7, C8, and right T1, T2 and bilateral T3, T4 dermatomes. Absent pinprick from t5 bilaterally below. No deep anal sensation, np anal wink. No tone, no clonus, no Hoffman's. No proprioception in the bilateral lower extremities. Reflexes right biceps, 1, right triceps 0, right brachiordadialis 0. Left biceps, brachioradialis, and triceps 2. Zero refexes at the kness and ankles bilaterally. Upgoing toes bilaterally. Manual muscle testing exam: right deltoids 3, biceps 3, wrist extension2, triceps not tested secondary to pain, finger felxors 0; left upper extremity strength 4 our to 5 throughout. Bilateral lower extremities from hip flexors below 0. His brain injury consisted of a right frontal subarachnoid hemorrhage, and a left occipital lobe contusion. An ICP monitor was placed and he had an opening pressure of 3. This is about the extent of his report. Some of this I understand through what you said, some of it, I'm so clueless. I am now understanding the dangers of pressure sores /decubitus ulcer (thanks for the med term Wise) and wish to address this with staff at Tacoma Rehab Center. I will be in touch Angela, and can't thank everyone enough for their comments! Literally, I am speechless by your comments and caring attitude. Up until today, I thought I was alone in my pain. This is all so new to me. May God Bless You All!

[SCI-Nurse]

Is your son still in the military or has he been discharged? If discharged, did he have a dishonorable discharge? If not, then he should be going for rehab to a VA SCI Center. There is a very good one in Seattle. Unless he had a dishonorable or general discharge, he is entitled to this care and should qualify, esp. if he has no money. If he is still active duty, the military is REQUIRED to refer him to VA SCI care. He can get much better care there. If you want him closer to home, there is also a VA SCI Center in St. Louis, MO at Jefferson Barracks.

I suspect he is in a "sub-acute" (nursing home) program now. This will provide him with a maximum of 1 hour of therapy a day. They are not set up to care for people with SCI, or with TBI. Push for your son....he may not have been in touch lately, but he needs you now.

Hang in there and use us for more information as much as you need.

(by the way, our responses are in reverse order here after the original topic...it takes some getting used to, but is actually easier once you are used to it).

(KLD)

[Missourian]

Thank you Nurse for your comments. Unfortunately, when my son went AWOL they gave him a BCD (Bad Conduct Discharge). He qualifies for "nothing" from the VA. I am a veteran as well as my husband who is retired military. I'm not sure, but I am researching the idea that maybe he could still qualify as a "dependent" (probably not), but I'm grasping at straws. Yes, you described the nursing home very well
"sub-acute", as he only has therapy one hour a day. Wow, you are awesome! http://sci.rutgers.edu/forum/images/smilies/smile.gif
He can't use his right hand, fingers are numb and no sensation from the elbow down. I am hoping that will change. I will push for him, as the comments I keep reading encourage me to become well educated with SCI. Although I work with underpriveledged children, I'm sincerely thinking about changing my profession. http://sci.rutgers.edu/forum/images/smilies/wink.gif
I will be sending a picture of my son to this site and hopefully, when he can regain some usage with his right hand, I will encourage him to participate in this wonderful community!!!

[SCI-Nurse]

Unfortunately veterans' dependents are not currently eligible for VA care. Push to get him back to Harbor View for the rehab program. He needs an acute, not a sub-acute program. If they will not take him, try to get him back to a SCI program closer to your home. St. Louis has a good center.

I would still encourage you to contact a NSO (National Service Officer) from the PVA ( www.pva.org (http://www.pva.org) ) to see if there is any chance of appealing your son's discharge status. These have been changed in the past. It is worth a try.

(KLD)

[bruce]

Angela, I also see Dr. Goldstein and agree he is the BEST! However it's my understanding he only sees outpatients, so that wouldn't help Missourian's son.

For more info about my experience, see my post about Harborview and the University of Washington (http://carecure.org/forum/showpost.php?p=235420) in another thread Wise started about this.

I feel I should post on topic here .. that is about *my* acute SCI experience. Earlier in this thread, Kate posted her version of our story. I can't do it right now, but will try to in the next couple of days.

Meanwhile, Missourian, I wish you the best as you navigate this incredibly difficult, painful, sad terrain. You and your son are in my thoughts and prayers.

- Bruce

[Missourian]

Thank you projectorguy for taking the time to repsond and your kind words. I wish to follow-up on a few of your comments in the forum where Dr. Wise addressed some of my concerns. Thank you again, this has been a difficult time for me, but each day, I'm starting to regain more power by educating myself with everything on this site. I've darn near clicked on everything and I'm still not finished reading!!!!http://sci.rutgers.edu/forum/images/smilies/eek.gif

[macska]

I have not visited this site and i would just like to welcome Missourian to this sad, but very informative and supportive club.
My son Jordan is 17, a T4-5 complete para,11 months post injury from a GSW.
I can't really give you advice on the best place for your son as/rehab and such since i live in canada, but maybe i can give you some pointers on how to push for founding, how to be his advocate and how to help him get thru all this.
In the meanwhile hang in there and also rememeber to take care of your self. You no good for him if you are sick.
Blessed be,
Andrea

[Missourian]

Hello everyone! I am hoping someone can answer a few questions for me. How soon after an injury can someone start rehab? My son is a T4 complete. He is still wearing a CTLSO which will hopefully come off August 29th. He sustained his injuries on 5/16/03. I am very concerned, although he's recovering in a Nursing home, his paralyzed body parts seem to be deteriorating. Of course, as pointed out to me in another forum, he is not in a skilled nursing home. I am now in receipt of the power of attorney my son sent to me, can I now request that he be transferred to an acute care nursing home? And since there is such a great distance between us, my work will have to be done on the phone, and I will not be able to tour any new facilities until I can make arrangments to fly. Are there specific questions I should be asking when searching for a better facility that can help my son? Do newly injured patients have to wait x amount of time before starting any type of rehab/exercise program? Thank you in advance for any advice.

[Missourian]

Glace, I apologize, I did not see your post and wish to thank you for taking the time to welcome me. I read your profile and concur with your statement...."I don't remember my life before (insert date of accident here)" Because I feel the same way!! http://sci.rutgers.edu/forum/images/smilies/frown.gif

[~Patrick~]

Missourian, Good to meet you and I am very sorry to have to meet you like this. I'm sure someone with more in the know will answer you but I'm gonna say the Dr. is the one that determines how much therapy your son should be doing now. I had T-10 inc with rods placed on both sides due to a burst fracture and they came to my bed three days after sugery and started therapy on me. It was very minor but still it was a stepping stone. I think the most important thing right now is the bed sores and UTI. Hang in there and BE AGRESSIVE!!! But in a kind loving way. God bless Pat

http://www.spamhate.com/usa.gif

[Wise Young]

Missourian,

I agree with Pat. It is important to be aggressive and ask for more and earlier rehabilitation. He should be getting daily physical therapy. In many centers, rehabilitation starts within days after injury.

As soon as his fracture site is deemed stable enough, he should be starting on a standing frame. I would also recommend that he start spending time standing and swimming in a swimming pool. The more activity he gets, the less likely he will get the complications of spinal cord injury, including atrophy, bed sores, and urine tract infections.

Where in Missouri is your son situated? St. Louis has two good spinal cord injury rehabilitation centers (SLU and WashU). Besides physical activity, a major goal of rehabilitation is to teach your son how to manage his condition, including his bladder, bowel routine, and skin care. He needs to learn to transfer, drive, shower, use a wheelchair, and many other skills that a person needs to develop.

Finally, it is important that he gets counseling and begin preparing for the time when he goes home. Lots of decisions have to be made and he will need a place where he can be as independent as possible.

Is he in college or planning to be? If not or if so, I would strongly encourage that he start thinking about going to college or continuing his education. Many studies have shown that people with more education do better and recover more after spinal cord injury.

Wise.

[KLD]

I agree with Dr. Young. He should have already been in an acute rehab unit. We provide rehabilitation to patients all the time in spinal orthosis. They will limit some activities, but meanwhile there is much else that can be done, and the person can then go home and work on the higher level skills once the jacket comes off as an outpatient. There is no excuse for delay with someone with an injury like his. Sounds like an insurance company that is jacking you around.

You need to push to move him yesterday to an appropriate acute rehab unit, not a subacute unit or nursing home!

[macska]

my son started his rehab about 1 week after his injury already at the hospital, the first step was to teach him to sit up.
after that as soon as he was transferred to the rehab facility he began to learn the basics.
also weight and stregth training is very crucial for upper body strength.
the sooner he starts the better.
all the best
andrea

[KLD]

Forgot the second part of your question.

Go to this site: www.spinalinjury.net (http://www.spinalinjury.net) and check the Rehabilitation page for a good checklist of questions to ask.

Only consider a CARF accredited SCI program or one that is a Model System SCI center. You can get a list for any area of CARF accredited programs by sending a query to CARF at www.carf.org (http://www.carf.org)

Do not consider any program that treats less than 30-60 new injury rehab SCI patients annually.

[ScottS]

Missourian,
I was medically retired from the military about a year ago (due to SCI) and spent about 5-6 months at the VA SCI center in Palo Alto, CA. While there I asked if dependents were allowed, because my mother has MS and is a dependent (my step-father is retired military). I was told that dependents ARE allowed at the VA SCI centers, and met an 18yr old dependent who had been treated at Palo Alto.
Anyway, my point is that dependents are allowed at VA SCI centers, at least under some circumstances. You should check into it further to see if your situation merits his admission. The VA rehab I received was top-notch, and they determine their patient's discharge on whether they can accomplish anymore with the person, not simply on how much time they have been there.

[SCI-Nurse]

Dependents of veterans are not eligible. Dependents of active duty personnel may be eligible at some VA SCI Centers IF they have a contract for Tri-Care (we do not at our center). This is not true for all SCI Centers and dependents have the lowest priority for admission. Humanitarian admissions of non-veterans otherwise are limited to those circumstances where there is no comparable private sector unit within 100 miles, which certainly would not be true of either Seattle or Palo Alto.

(KLD)

[Missourian]

I apologize for not returning sooner to read everyone's input. Thank you SCI-Nurse, ScottS, KLD, and Glace for taking the time to respond to my inquiries.
I have recently been in contact with the Rusk Rehabilitation Center in Columbia, MO. This Center offers comprehensive inpatient and outpatient rehabilitation programs and specialized treatment for spinal cord and brain injury. It is not only CARF accredited but also a Model System SCI center. My biggest obstacle is getting my son from Point A (Washington State) to Point B (Missouri State).
I have got to get him out of that Nursing Home he is in. Yesterday, when I spoke with a Nurse to inquire about my son's bedsores, I learned he is in Stage 3. The nurse specifically stated since my son is alert, and informed about the seriousness of his bedsores, he was the one that was responsible for making sure the bedsores are not further aggravated. I then asked the Nurse how "Alert" can someone be when he or she cannot feel nor see the severity of his or her wounds? She had no reply other than a "wound" specialist sees my son each Friday. My son had a few visitors from extended family members recently, and the Nurse stated he should have stayed in bed instead of going places with family members. He has been given a manual wheel chair by the Nursing Home, yet this chair does not meet his needs. It is this chair that aggravates the pressure sores. No seat cushions to help shield vulnerable areas have been provided in this chair. About a month ago they ordered a special bed for him to use. I believe since he's susceptible to pressure sores, they should be practicing "preventive" care. They use no special skin chart to outline the color of his skin so they can detect pressure sores in the early stages. The Nurse had to sift through several pages of paperwork to answer my questions on the phone concerning his pressure sores. He is not on antibiotics, as the Nurse said not all pressure sores require this. He is merely taking extra vitamins for nutritional purposes to help speed recovery.
The Nurse couldn't answer my questions with regards to how often they turn him since he is now confined to a bed. She only stated that he has a special bed to alleviate pressure sores. I can't bring him home to Missouri until his medical conditions clear up. He also is experiencing another UTI.
My question is, although my son is 21, and the Nursing Home states he is responsible for making the right choices for preventing his bedsores, what is the Nursing Homes obligation with regards to making sure he follows certain orders to keep his pressure sores down to a minimum? For example, if my son wanted to play with matches out in the courtyard and it was found that he was burning parts of his skin because the matches were falling into his lap, would they not be obligated to keep the matches away from him? This scenario is an extreme example, but in theory, if my son was told not to be in his wheelchair because it will make his bed sores worse, would they then have an obligation to keep him in bed, regardless of what "he wanted"? Obviously, I understand that my son is in some way responsible for making choices that prevent his pressure sores, but if the Nursing Home is allowing him to do what he pleases, then I worry about his safety because he's not making good choices right now. Also, my son informed me last night that he can't get a sponge bath every day. I heard him pleading on the phone last night to have one of the female nurses give him a bath. The Nurse told my son that no females were available, but that Stan was. My son said he didn't want a male to give him a bath. The Nurse then stated that he would have to wait. That's when I asked my son how long it had been since he was given a sponge bath, he said "3 days, and I'm so miserable and feel dirty right now." Getting the proper care and Rehab for my son isn't that easy because of our distances. http://sci.rutgers.edu/forum/images/smilies/frown.gif

[SCI-Nurse]

The nurse is correct that there is no reason for antibiotics with a pressure ulcer unless he has a systemic infection (fever, chills, etc.). Good nutrition is also very important. She is also correct that total bedrest (no time up in a chair, regardless of the type or cushion) is a must. Since in a nursing home 1 RN will be responsible for 60+ patients, I don't think it is unusual the she would need to refer to his chart to find this information.

Your son is competent, and an adult. No one can "make" him do anything, and taking away matches, forcing him into bed if he gets himself up in a chair (why was he sitting and playing with matches???) etc. is considered a violation of his rights and possible patient abuse.

As a paraplegic, he should be able to do at least 50% of his own bedbath. Most nursing homes (and most hospitals) do not do daily baths. 3X a week is more the usual, with "pits and peri" in between (armpits and genitals only). This is nice, but not a medical necessity. I am sure they are as severely hurt by the nursing shortage as other areas, and nursing homes pay so poorly they have even worse problems.

Even on a special mattress (find out what type it is) he needs to be turned every 2-3 hours. Special charts are not required for skin inspection. He should be looking at his own skin with the nurses using mirrors. This way he can tell if it is less or more red that it was on the previous shift. He should be doing this at least twice daily with their help.

In spite of all this, if you can find a center to accept him, move him NOW. He is medically stable enough to fly commercial with someone with him. Yes, it would be ideal not to sit on his pressure ulcers, but in reality, people do this all the time for travel for medical and other reasons. A 4 hour plane flight will not kill him. Rent a van, put him on a foam mattress in the back, rent a wheelchair if you have to, and drive him to the airport in Seattle. Do the opposite at your end. No amount of complaining will make a nursing home provide what they don't have and have not the knowledge or funding to provide....an appropriate SCI care program for your son.

(KLD)

[Missourian]

The "matches" were a hypothetical scenario, with regards to my question. It did not happen. My son is a sitting vegetable in the Nursing home. Obviously, my intent is that he learn how to do things for himself, and that isn't happening at the Nursing home, so there lies my frustration. I've currently been in contact with Harborview and we are trying to set up arrangements to have him leave the Nursing home so that a direct transfer to another Nursing home in MO. can be done. It's not as easy as you make it sound. I can't just wisk him away since I have no set up at home. I haven't even been trained with how to take care of his needs, (ie transfers, cath, meds). I have to research my options for direct care when he arrives. Yes, my son is an adult, "competent" is questionable, but he isn't being educated with regards to caring for himself, and has now become extremely dependent on those around him. Yes, my son is a paraplegic, but he can't move his right hand. He should be doing 50% of his own bed bath? He should be doing a lot of things, but again, it goes back to my frustration of no one "teaching" him anything while he's in the Nursing home. Hopefully, that will change as I work towards his transfer. Understand that I know how hard "nurses" work, I know how understaffed places can be, and I'm thankful for all those individuals who have cared for my son. This is all new to me, and since I can't visit him regularly, all I can do is communicate by phone. I also have two younger children to care for, and need to respond to their fears as well concerning their brother. I have also halted construction on a new home so that modifications can be done to make it wheelchair accessible. I have to widen door entries and hallways, ect. All this modification costs "money". I'm in Graduate school, (which costs me money), the list goes on, so "money" is an issue at the moment, and I apologize if you think I was "complaining. That was not my intent, nor have I "complained" to the Nurses at the Nursing Home. I was merely trying to get feedback.Thank you for your reply.

[SCI-Nurse]

Nowhere in my reply did I say you need to take him home with you and care for him yourself. I also do not recommend he should be moved to a nursing home in MO (it will be no better and perhaps worse than where he is now).

He needs to move to an acute care hospital where he can have proper treatment (probably a flap) for his skin, then when he is ready, move to an appropriate SCI rehab center in your area. To achieve this, you probably will have to move him yourself by air, as I stated below, as no one else will pick up this costs. You can see if he is eligible for a humanitarian air transport, but he would need to have an accepting facility in your area in order to arrange this.

(KLD)

[Hope & Bill]

Hi, I am the girlfriend (fiance', actually) of a T-6 para.He fell from a tree 20 or more feet almost 10 months ago.Was flown to a well-known SCI center in Phila, where we assumed he would receive good care, we are both EMT's and have some knowledge of spinal injuries.There was not really any communication with me from any Dr's other than the first night in the ER. He seemed to be getting good care there, and also in the neuro unit he was in for the first week. He had the T-6 fracture, a shattered wrist, many broken ribs, some in 2 places, and 5 more fractures in his pelvis and hip. The pain he was in was severe, so he was given morphine, which he stayed on for several weeks, till they gave him oxy. The problem was, it made him so groggy, he never remembered what the Dr's had said during the early morning rounds. I was listed on the chart as next of kin, and the one he wanted his condition discussed with, but I never got a call.I noticed that Jeff Wise Young said in his article that Methylprednisolone is to be given within the first 8 hours for better recovery.They did tell me in the ER that he was given steroids, I'm hoping this was one. He was in a "model" SCI hospital, so I hope so. We were very disappointed that the Dr's never realized that Bill was too groggy to retain much that was being said. No family meeting was ever suggested, either. The level of care went down as he was considered more stable. He had lain in the woods for several hours before he was found, so his vital signs were not good at first. When he was transferred to a step down unit, the care got worse. I work for a hospital on a paramedic unit, so I realize there is a nursing shortage, but I wish someone would have warned us that with paralysis comes the chance of bedsores. I was in the room 8 hours a day whenever possible, and had I known he would get a bedsore if not rolled every 2 hours i would have done it myself. He was not real happy to be moved as the ribs were excruciating, and the incision on his back was painful also, but if anyone had shown us pictures, or explained about the possibility of decubitus, things would have turned out diffrently. He did get a bedsore while in there, was on a regular hospital bed until I noticed it getting worse and spoke up, only then were plastic surgeons called and he was put in an airbed, with instructions to roll every 2 hours. He was not able to got to rehab with all the fractures, wasn't weight bearing on the wrist, had a plate in it and a fixator on the outside, so we went home after 5 weeks in the hospital, with a visiting nurse coming once a week. The sore continued to get worse. All the fractures healed, but the sore didn't. It is now almost 10 months later and he is still fairly weak, has not learned how to transfer in and out of bed, so we have had to improvise and pray that neither of us gets hurt trying.
He was evaluated at two rehabs, both said he will need to have the sore healed before he can get in. It seems pretty unfair. He's only 45,was extremely active before the accident, we hiked, camped, fished, he golfed, etc, now he is like an invalid, and getting weaker. He had lost 50 pounds in the hospital, they thought off and on that he had a blockage, so he was on a liquid diet much of the time. He was sick for the whole first month at home, and i finally had him taken by ambulance to our local hospital where they said he had MRSA, a staph infection he must have been discharged from the first hospital with. He needed a pic line put in and antibiotics for three weeks, which i did at home when they released him. Lots of UTI's, and all the other lousy stuff that seems to come with this. So, please, it you have a newly injured family member or friend, make sure the staff is taking care of moving them around in bed, every few hours, and making sure they are changed and cleaned well after a bowel movement.I had thought last Nov after the accident, that he would be through rehab and adjusting to life within 6 months. He is so eager to go back to work. All he does now is lie in bed, side to side, and occasionally we go out (what an effort) for a ride or to visit our firehouse, where he was assistant fire chief before the accident. It does cheer him up to be around friends. This was a long story, sorry!!!!! Good luck to everyone, you are all so brave, and honest, I could cry. HOPE

WE'RE HOPING FOR THE BEST

[Wise Young]

Hope&Bill, thanks so much for posting. I am aghast at what you describe, particularly the lack of communication from doctors or nurses concerning some very basic things, like decubitus prevention and transfer, and the infections.

I agree with you that it is unfiar that rehabilitation units are not willing to take him until his decubitus has healed. A person with a decubitus actually needs more rehabilitation than somebody who does not have it. Did anybody explain to you why? Is it because they are afraid that his length of stay will be too long? Or are they thinking that they would not be able to rehabilitate him while he has a decubitus? There are so many things that could be done, including aquatic therapy,

These kinds of stories sometimes make me want to go back into medicine and try to do something about these situations. It is useless to talk about cure when basic care is so lacking. Preventing decubiti, taking care of infections, providing good nutrition advice, and developing solutions for people to get around can be done now without fancy research or new knowledge.

Wise.

[foster]

Hope&Bill If you are talking about Thomas Jefferson my son was there for 35 days and I don't think we talked to the doctors 10 min. total. The good thing was that he stayed in NICU for most of the time. The nurses there took care of him like he was there son or brother. But as soon as he went to a step down unit the care got worse. Then he went to Magee Rehab was only there 15 days because they said they couldn't do anymore with his brace on. They didn't even teach him how to self cath. He still had a foley in when he came home.

I changed the days from 65 t0 35 after my wife saw the post.

[This message was edited by foster on 08-30-03 at 08:11 PM.]

[lilsister]

hope, i read your post and know where you are coming from. don't give up on rehab! my brother is doing it for the third time! he also had multiple prblems, poor md communications and hospital induced bedsores. now his skin is clear and physical therapy is better. he was refused at sheperd sci center til bedsore was healed to a certain point. then he was refused the pool due to infection possibility. find a rehab md he and you feel comfortable with, a wound care nurse that will see him regularly, till bedsore is healed, build him up nutritionally and then get the phsysical therapy. i learned that having a good doc made all the difference. good luck to you.

[SCI-Nurse]

Hope&Bill & Dr. Young,unfortunately we have the federal government and Medicare to thank for ths sorry state of SCI rehabilitation in this country.

With recent implementation of PPS (Prospective Payment System, similar to DRGs)for Medicare which is also mandated for all non-Medicare patients in acute rehab centers that take Medicare patients, none are able or willing to take a patient into acute rehabilitation with a pressure ulcer that will preclude full participation in a 3 hour daily (minimum) out of bed therapy program. They must also discharge the patient within the number of days dictated by PPS. If they accept patients who cannot do this, or who stay longer, they are very likely to be fined by Medicare and be denied payment for ANY of the rehabilitation stay by the insurance company.

This is not by choice of the rehabilitation centers. If people are unhappy with this, they need to complain loudly and often to their Congressional representatives who let Medicare set up this system.

If your son has had a pressure ulcer this long and it has not healed, he probably needs a surgical flap. This would be done in a general hospital (be sure to have a plastic surgeon who is expert in this), with a recovery period on total bedrest of about 6 weeks. This could be at home on a specialty bed or in a nursing home. Once this has healed and he can start sitting, he can be re-evalauated for an inpatient rehabilitation program.

I have seen successful suits over acute care hospitals allowing patients such as your son to develop pressure ulcers. Something would be done by the hospitals if more suits were pressed. These are totally preventable in the ICU and acute care units with the technology and knowledge we have today. I would suggest you seek the advise of a malpractice attorney.

Last but not least, I am assuming your son is not a military veteran. If he is, he need to get to the closest VA SCI Center ASAP. They will take patients with pressure ulcers as they are not under the PPS system, and can be a godsend to those veterans with SCI who qualify.

(KLD)

[This message was edited by SCI-Nurse on 08-30-03 at 04:57 PM.]

[Wise Young]

KLD, I agree. In the case of Hope & Bill, the situation was complicated not only by a pressure sore but by the presence of orthopedic problems. I understand why rehabilitation centers are unwilling to accept patients with pressure ulcers who cannot undergo the full rehabilitation program and may overstay the mandated length of stay.

I think that you would agree with me, however, that this is no excuse for such lack of communication and care in the acute hospitalization stage. They sent a patient home with an unhealed and probably infected pressure sore at 5 weeks after injury. This patient is now 10 months after spinal cord injury and have not had rehabilitation. He clearly does not have a physician who is taking responsibility for this case.

This is not something that can be laid solely at the feet of Medicare and the federal government.

Wise.

[This message was edited by Wise Young on 08-30-03 at 04:33 PM.]

[SCI-Nurse]

I agree. Notice that I suggested they seek legal advice for care that was not received per clear standards of care within the acute hospital. The rehab center is really a separate issue.

(KLD)

[Missourian]

Hope and Bill, I can certainly sympathize with your situation. SCI Nurse, I've recently learned more facts concerning my son's lack of rehab. He was admitted May 16th for his injuries. 7 weeks later, he was discharged to the Nursing Home because he could not sit for 3-4 hours. The acute rehab program at Harborview required that he be able to sit for 3-4 hours a day. They were hoping his strength would improve while recuperating at the Nursing Home. However, because complications with pressure sores and UTI's developed, they again refused his admittance into the acute rehab program. They stated to me his pressure sores needed to be healed first before they could accept him into their rehab program. He was seen Friday and they took pictures of his sores. My POC at Harborview stated they have no affiliations with the Nursing Home and therefore can only provide the Home with instructions on how to heal my son's wounds. The Nursing Home physician who's had no experience with SCI patients is his attending doctor. I was told he was discharged with a care plan, but how the Nursing home deciphers his care is a separate issue. When I requested my son see a psychologist to help him with the mental changes of his life, Harborview said they could only recommend this to the Nursing Home. The Nursing could ultimately decide if they would provide this service to my son because they (Nursing home) would have to pay for this service. Although my son has Medicaid, it's up to the Nursing Home to decide what services will be provided. So in a nutshell, no acute rehab can be offered to my son until his pressure sores heal because he needs to sit for 3-4 hours for the type of rehab they offer. Unfortunately, he's not learning self care, constantly complains of pain in his right shoulder, still can't move his wrist and fingers and the Nursing home physician won't prescribe anymore pain medication because he told my son he was leaving soon. I was perplexed with that statement, because although I've talked with staff at the Nursing home about the possibility of moving my son to Missouri, nothing is concrete. Also, Missouri has a 45 day wait period for Medicaid, leaving my son with an open window with no insurance coverage. My son is a member of PVA, but for medical coverage under VA he had to serve on active duty for 24 months. He only has 1 year and 3 months. 9 of those months he served at sea during the Gulf War and earned the National Defense Service Medal. He received an "other than honorable" discharge for his AWOL, and we are working on an appeal for upgrade (which is long and tedious), but it won't change the fact that he was only active duty for a year, which exempts approval for VA medical services.
I also read in the PN (paraplegia news) magazine (July 2003 issue) about Diapulse studies. It quoted parts of Dr. Young's research. Very impressive, thanks for your dedication and research Dr. Young!! All this is still so confusing for me and I'm trying to research, understand, and absorb all that I can. In the meantime, I've got to stay on top of his pressure sores and recent UTI. Last night his temp was up to 102. He did get his brace off Friday and is now having problems breathing. I guess the brace helped him breath better? I don't really know. It's hard to help my son when I feel so helpless myself. http://sci.rutgers.edu/forum/images/smilies/eek.gif Thanks for sharing your story Hope, it helps me understand that I'm not alone with how I feel. I pray that things improve for Bill.

[Hope & Bill]

Thanks to everyone who took the time to write back with advice and suggestions.We feel very alone with this thing, at least in a rehab setting there are peer groups, Bill, my fiance' could ask others if they feel this and that.He wonders why he has this band of pain around his waist,right where the paralysis starts, and lots of other things we're sure others experience, but we don't know for sure. The rehab does need him to be able to sit up for several hours at a time, that's why he's being refused.He has good insurance, we're hoping that million $ cap isn't too near, with all the medical stuff he's needed over 10 months. He had a vac pump for 4 months with no significant healing, we are planning on a flap, but trying one more place, Riverside in DE, where they are known to have a great rep for healing decub. His is a sacral wound, was almost 5 cm length, over 3 cm wide, and at the deepest, was 3 cm deep.Only once was a test done to make sure it wasn't in the bone, one Dr at a rehab while he was being evaluated said he needed a flap (way back in Feb), but he wouldn't do it because for all he knew there might be bone involvement!!!!But he didn't order a test!!!.He also said he was afraid the sacral screw he has in there might be why it isn't healing.He doesn't have a sacral screw, just a hip screw!!!!He wouldn't take my word for it though, or read the chart again.We were very turned off by the attitude there. Sorry to complain so much. We have the appointment at Riverside next week, so we hope things will get better soon. Thanks again for the support and time, everyone. Lots of caring admin. and friends. Good luck, Hope

WE'RE HOPING FOR THE BEST

[catwoman]

Hello - Just wanted to comment on Hope & Bill's situation. My 20-year-old son is 13 months post-injury. T1 paraplegic incomplete from a tree falling on our car and hitting him on the top of his head. He was in Jefferson NICU one week before having surgery (on a roto-bed) In NICU four more days after surgery (on air mattress) then in step-down four more days before going into Jefferson's rehab unit for 10 days before moving on to Magee. He was on air mattress the whole time. I agree with Foster about nurses in Jefferson NICU vs. step-down. And I agree that doctors were hard to get ahold of. We sometimes went in very early in the morning while they were there for rounds. No complaints for us with Magee. Very fortunate to never have serious skin issues. They were also very supportive of us in getting things arranged for when he came home, such as attendant care, etc.
I also agree that the government, medicare and insurance companies are a huge part of the problem since they dictate the level of care give in many situations.

Foster - my son wasn't in a brace of any kind, but I thought the plan was to return patients to rehab once the brace came off, understanding that the amount of rehab would be limited while brace was still on. Was this not the case?

Wishing you all the best in this journey we're on. Thanks to Dr. Young and all the SCI nurses (and fellow members) for all the great information and support!

[Hope & Bill]

DEAR CATWOMAN,
I'M SORRY TO HEAR ABOUT YOUR SON.WHAT A FREAK TYPE OF ACCIDENT.WRONG PLACE WRONG TIME I GUESS.IT'S ASHAME. I AM GLAD THE STAFF KEPT HIM IN THE AIRBED, AS I SAID, I THINK IT WOULD HAVE KEPT BILL FROM GETTING THE DECUB IN THE FIRST PLACE.FUNNY HOW ONCE I GOT VERBAL AND COMPLAINED ABOUT THE BED SORE GETTING WORSE, THEN THE PLASTIC GUYS WERE CALLED AND AN AIRBED WAS ORDERED.AT THAT TIME HE HAD HAD THE SORE AT LEAST A WEEK. HE HAS BEEN IN ONE SINCE DISCHARGE, WITH NO NEW SKIN BREAKDOWN.THE ONE WE ARE DEALING WITH (DECUB) IS BAD ENOUGH. I WONDER HOW THEY DECIDE WHO USES ONE FROM THE BEGINNING AND WHO DOESN'T. HE HAS GOOD INSURANCE. WHILE I AM "VENTING", THEY ALSO SENT HIM HOME WITH AN ELECTRIC WHEELCHAIR, WHICH HE WAS TOLD TO BE IN AS MUCH AS POSSIBLE. THAT REQUIRED PUTTING THE BRACE ON, (VERY UNCOMFORTABLE, AND PAINFUL WITH ALL THE BROKEN RIBS), ROLLING HIM TO GET THE SLING UNDER HIM, THEN USING THE HOYER LIFT TO GET HIM UP AND OVER THE WHEELCHAIR, (HE ALSO HAD A SHATTERED WRIST, COULDN'T BEAR WEIGHT) I WAS THE MEAN GUY WHO MADE HIM SIT UP AS MUCH AS POSSIBLE, WHEN HE WOULD HAVE RATHER STAYED IN BED, DUE TO ALL THE PAIN, BUT I FORCED HIM TO GET UP AND STAY UP AS LONG AS POSSIBLE, PER THE HOSPITAL ORDERS.A PT WHO CAME TO THE HOUSE ALSO URGED HIM TO BE OUT OF BED AS MUCH AS POSSIBLE.EVERYONE INVOLVED KNEW HE HAD A DECUBITUS IN THE SACRAL AREA, BUT STILL WANTED HIM SITTING. THE FIRST EVALUATION AT MCGEE THEY ASKED IF HE WAS SITTING, A REQUIREMENT FOR BEING ADMITTED THERE, A WOUND CARE NURSE TREATED THE WOUND,SO ALL KNEW OF IT'S EXISTANCE. WHEN WE HADN'T HEARD FROM THEM CONCERNING WHEN HE COULD BE ADMITTED, HE CALLED AND THEY ASKED THEN IF HE WAS SITTING UP IN A CHAIR.NOW ALL OF A SUDDEN, SITTING UP WAS A BAD THING, AND WAS THE REASON THE SORE WAS GETTING WORSE. NOW HE WAS PUT ON TOTAL BED REST, TURNING FROM SIDE TO SIDE, NO BACK LYING.
WE WONDER WHY HE WAS EVER TOLD TO SIT UP, WHY AT THE FIRST EVAL THEY DIDN'T TELL US TO STOP USING THE WHEELCHAIR ETC.IT REALLY FELT LIKE A HUGE GOOF-UP, BUT OF COURSE NO ONE ADMITTED TO THAT. THAT WAS FEB, AND THIS IS A VERY SLOW HEALING PRESSURE SORE. HAS STEADILY GOTTEN BETTER OVER THE MONTHS, BUT STILL 2 CM DEEP. NO REHAB YET, AND SOME DAYS HE IS SO DEPRESSED, JUST LYING IN BED MOST OF THE TIME. HE USUALLY HOLDS IT TOGETHER SO WELL, BETTER THAN I EVER COULD, BUT NOW AND THEN IT IS JUST TOO MUCH. HE THOUGHT HE WOULD ALREADY BE BACK TO WORK BY NOW (HE WAS A PLUMBER FOR 26 YEARS)HE'S 45 NOW. SO SOME ADVICE TO ANYONE NEW GOING THROUGH THIS, DON'T SIT IF YOU HAVE A DECUB, EVEN IF YOU HAVE BEEN ORDERED A CHAIR, ASK YOUR DR TO BE POSITIVE, DOUBLE CHECK ANYTHING THAT DOESN'T SEEM TO MAKE SENSE TO YOU.WE'RE STILL WAITING FOR SOMETHING GOOD TO START HAPPENING. PS... THE FIRE CO WE BOTH BELONG TO IS HAVING A HUGE BENEFIT FOR HIM, WHICH IS REALLY NICE, AND HE IS REALLY LOOKING FORWARD TO. GOOD LUCK TO ALL, AND THANKS TO DR. YOUNG AND ALL WHO HAVE RSPONDED. I HAVE BEEN SOUNDING LIKE A MAJOR WHINER!!!!!! HOPE

WE'RE HOPING FOR THE BEST

[krstofer]

Get yourself a big 'ol pot of coffee, a nice kushy chair, and have yourself a read. (http://krstofer.org/firstyear.htm)

http://krstofer.org

Dr. Young, just heard about a young college kid that has an SCI injury from a diving accident. He is 3 weeks into his trauma.Is there any place we can let him know about who may be having some success with bringing swelling down in the acute phase?I haven't talk to his folks yet but expect to be in touch soon.Obviously I'll let them know about this web site as well.Thanks , Joseph

[krstofer]

The quick and dirty, if you don't want to read all about it: (http://krstofer.org/firstyear.htm)
October 31, 2001 the Plumas Hotshots (http://www.umt.edu/globalfirenet/nationalpage.htm) had been called to Clay County Kentucky to assist in a haloween tradition there, which is the setting of hundreds of arson fires. (We went to put them out, NOT set them, btw)
I was a sawyer on the crew, and during our 2nd fire of the assignment a 67' black locust tree burned through and fell out of the burn striking me over the top of the head. It was 6 inches in diameter where it got me, and had I not been wearing my my (http://crew13.com/top.jpg) helmet (http://krstofer.org/shotlid.jpg) I would surely be dead now.
Injuries sustained were 7 smashed teeth, broken left scapula, clavicle, damaged left brachiel plexus, 15 broken ribs, collapsed lung, lacerated spleen, torn cruciate ligament, and a burst fracture of T 4/5.
I was airlifted to the University of KY's Chandler Medical Center where I spent 30 days in the neuro ICU, and recieved a titanium spinal fusion (http://krstofer.org/ebay.jpg).
I went from 245 pounds down to 165 while there.
I then graduated to the Cardinal Hill rehab hospital where I spent 2 and a half months, then on to Craig hospital for another 2 and a half months of rehab.
Finally made it home from a 2 week assignment (which started in october) on April 5th.
I've written all about my expierences, starting around December of 2001, the story of which can be found on my site.

Thank you, South Eastern Kentucky arsonists.

I now get full medical and dental, and 2/3rds of my base pay ($34,000) split into 12 monthly allotments. I am also being "retrained" by the Federal Government as a computer scientist.

http://krstofer.org

[This message was edited by krstofer on 09-04-03 at 08:16 PM.]

[kath]

Hello Wise thank you for you email regarding my brother Paul

[livinadream]

My injury happend 8 months ago on 6/15/03. I was on the roof of a friends house ripping off shingles when I slipped and fell about 10 feet right on my back. I immediately lost feeling and movement from my waist down.

I was immediately taken to Harborview Hospital where we found out I had broken my L1 vertebrea and had about 90% compression on my spinal cord. They fused me with titanium from t10 to L3. I was in Harborview for 1 week and then they transferred me to the UW rehab unit (I thank god for this every day) where I underwent 6 weeks of vigorous pt and ot. Today I am walking with the arm crutches and a kfo on my Left and a AFO on my right but I am walking 8 months post which all my doctors predicted I would not ever walk again.

I had & have a lot of good days but a lot of bad days also. My whole life has changed, where I live, whom my friends are, my energy level and my self confidence. I have a great psychologist at UW rehab and she really has been a HUGE help. I definately would advise anyone with a recent SCI Injury to talk with someone as an outside person can put a new spin on things.

You have to learn not only who you are now but you also have to deal with outside things like friends, family, work and just daily life. It can be overwhelming and terrifing.

Yes my life has changed completely but I do believe I will walk (unassisted) again and I also firmly believe this has happend to me for some reason. What that reason is I'm not sure of but I comfort myself every day with the knowledge that something good will come out of all of this pain and struggle.

I also have to wear heels again! http://sci.rutgers.edu/forum/images/smilies/smile.gif

[chris t4]

I suffered my injury in july of last year(2003).I had just returned home(jamaica) from Florida and was out drinking with my friends and ofcourse you can guess the rest.I was transferred from the first hospital to one in the capital of jamaica,I had done the surgery and everything went well and started very little therapy there.I returned home and had a PT come in and do therapy,I then travelled back to Florida after 2 months post injury.I continue to improve in therapy here(Florida) and I am positive that it will get better!
Only the strong live through an injury like SCI and make the impossible possible.Life for all SCI will get better,faith and hope and a strong mind will get us through and I will never lose either!

"everyday above ground is a good day"

[This message was edited by kris t4 on 02-25-04 at 09:19 PM.]

[anyapro]

Originally posted by HOPE&BILL:

DEAR CATWOMAN,
I'M SORRY TO HEAR ABOUT YOUR SON.WHAT A FREAK TYPE OF ACCIDENT.WRONG PLACE WRONG TIME I GUESS.IT'S ASHAME. I AM GLAD THE STAFF KEPT HIM IN THE AIRBED, AS I SAID, I THINK IT WOULD HAVE KEPT BILL FROM GETTING THE DECUB IN THE FIRST PLACE.FUNNY HOW ONCE I GOT VERBAL AND COMPLAINED ABOUT THE BED SORE GETTING WORSE, THEN THE PLASTIC GUYS WERE CALLED AND AN AIRBED WAS ORDERED.AT THAT TIME HE HAD HAD THE SORE AT LEAST A WEEK. HE HAS BEEN IN ONE SINCE DISCHARGE, WITH NO NEW SKIN BREAKDOWN.THE ONE WE ARE DEALING WITH (DECUB) IS BAD ENOUGH. I WONDER HOW THEY DECIDE WHO USES ONE FROM THE BEGINNING AND WHO DOESN'T. HE HAS GOOD INSURANCE. WHILE I AM "VENTING", THEY ALSO SENT HIM HOME WITH AN ELECTRIC WHEELCHAIR, WHICH HE WAS TOLD TO BE IN AS MUCH AS POSSIBLE. THAT REQUIRED PUTTING THE BRACE ON, (VERY UNCOMFORTABLE, AND PAINFUL WITH ALL THE BROKEN RIBS), ROLLING HIM TO GET THE SLING UNDER HIM, THEN USING THE HOYER LIFT TO GET HIM UP AND OVER THE WHEELCHAIR, (HE ALSO HAD A SHATTERED WRIST, COULDN'T BEAR WEIGHT) I WAS THE MEAN GUY WHO MADE HIM SIT UP AS MUCH AS POSSIBLE, WHEN HE WOULD HAVE RATHER STAYED IN BED, DUE TO ALL THE PAIN, BUT I FORCED HIM TO GET UP AND STAY UP AS LONG AS POSSIBLE, PER THE HOSPITAL ORDERS.A PT WHO CAME TO THE HOUSE ALSO URGED HIM TO BE OUT OF BED AS MUCH AS POSSIBLE.EVERYONE INVOLVED KNEW HE HAD A DECUBITUS IN THE SACRAL AREA, BUT STILL WANTED HIM SITTING. THE FIRST EVALUATION AT MCGEE THEY ASKED IF HE WAS SITTING, A REQUIREMENT FOR BEING ADMITTED THERE, A WOUND CARE NURSE TREATED THE WOUND,SO ALL KNEW OF IT'S EXISTANCE. WHEN WE HADN'T HEARD FROM THEM CONCERNING WHEN HE COULD BE ADMITTED, HE CALLED AND THEY ASKED THEN IF HE WAS SITTING UP IN A CHAIR.NOW ALL OF A SUDDEN, SITTING UP WAS A BAD THING, AND WAS THE REASON THE SORE WAS GETTING WORSE. NOW HE WAS PUT ON TOTAL BED REST, TURNING FROM SIDE TO SIDE, NO BACK LYING.
WE WONDER WHY HE WAS EVER TOLD TO SIT UP, WHY AT THE FIRST EVAL THEY DIDN'T TELL US TO STOP USING THE WHEELCHAIR ETC.IT REALLY FELT LIKE A HUGE GOOF-UP, BUT OF COURSE NO ONE ADMITTED TO THAT. THAT WAS FEB, AND THIS IS A VERY SLOW HEALING PRESSURE SORE. HAS STEADILY GOTTEN BETTER OVER THE MONTHS, BUT STILL 2 CM DEEP. NO REHAB YET, AND SOME DAYS HE IS SO DEPRESSED, JUST LYING IN BED MOST OF THE TIME. HE USUALLY HOLDS IT TOGETHER SO WELL, BETTER THAN I EVER COULD, BUT NOW AND THEN IT IS JUST TOO MUCH. HE THOUGHT HE WOULD ALREADY BE BACK TO WORK BY NOW (HE WAS A PLUMBER FOR 26 YEARS)HE'S 45 NOW. SO SOME ADVICE TO ANYONE NEW GOING THROUGH THIS, DON'T SIT IF YOU HAVE A DECUB, EVEN IF YOU HAVE BEEN ORDERED A CHAIR, ASK YOUR DR TO BE POSITIVE, DOUBLE CHECK ANYTHING THAT DOESN'T SEEM TO MAKE SENSE TO YOU.WE'RE STILL WAITING FOR SOMETHING GOOD TO START HAPPENING. PS... THE FIRE CO WE BOTH BELONG TO IS HAVING A HUGE BENEFIT FOR HIM, WHICH IS REALLY NICE, AND HE IS REALLY LOOKING FORWARD TO. GOOD LUCK TO ALL, AND THANKS TO DR. YOUNG AND ALL WHO HAVE RSPONDED. I HAVE BEEN SOUNDING LIKE A MAJOR WHINER!!!!!! HOPE

WE'RE HOPING FOR THE BESTA story like this just disgusts me.There is absolutely no reason in the world that anyone in the USA should develop a bedsore and yet-so many do.It is expensive to get the right equipment and that is all.But there is no savings as the expense will just go way up from having operations, hospital stays but most of all human misery.I think that you should just sue anyone you can hold responsible for the damage and pain.Meanwhile, if it is at all possible, get access to a laptop computer with the internet.There is so much to do on the internet, a patient really can ward off depression and keep busy.Better yet, write a letter to the responsible parties and ask for the funds to provide such services while the bedsore heals!

[tmman]

I'm new here so i don't know if this is the right place to post. I'm a 53 year old man that came down with transverse myelitis in January of this year. My rehab experience was as good as can be expected but I was and still am very frightened. I hate the way I am and despise being in a wheelchair. I'm having a very difficult time coping with this disease that I had never even heard of before I got sick. Does anyone else here suffer from TM and what has your experience been. Thanks for your help in advance

[Wise Young]

tmman,

I answered your question in another topic entitled: Transverse myelitis - frightened (http://carecure.org/forum/showpost.php?p=236064). Wise.

[lynnifer]

tmman - I was afflicted with it at age 12 - I'm 31 now

Sucks doesn't it? Ya wake up one day, seems like any other day .. then BOOM ... by day's end I had become a minority. I'm sorry this had to happen to you as well.

It left me a T-12 complete paraplegic (although I have had slight improvement in 19yrs but nothing 'real' functional - just have better knowledge of when I have to use the washroom).

There are at least two others I've met through here ... have you checked out www.myelitis.org (http://www.myelitis.org) ... it's a website for TM run by someone with it ..

[woman from Europe]

Originally posted by tmman:

I'm new here so i don't know if this is the right place to post. I'm a 53 year old man that came down with transverse myelitis in January of this year. My rehab experience was as good as can be expected but I was and still am very frightened. I hate the way I am and despise being in a wheelchair. I'm having a very difficult time coping with this disease that I had never even heard of before I got sick. Does anyone else here suffer from TM and what has your experience been. Thanks for your help in advance

I know exectly how you are feeling. 35 years ago I was walking down the street to meet some friends. Sunday morning and I was 15 years old. My feets were feeling heavy and I did not feel ok. I had to stop walking because I felt tired. I was sitting down at some steps and in one hour about I was paralysed in my legs. I was all alone and I was feeling very afraid. Some people came by and took me home.

I was send to the hospital and they did not find any reason and I stayed there for two month. Then they sent my to rehab and I was staying for 6 month. I was exercising 6 hours every day and when I came home I could walk very slowly and had a bad sensation. The two next years I was getting a little better. It was horrible and I felt very lonely.

So I have lived nearly all my life as a th12 incomplete. I have been married and have three children, working and lived as normale as possible.

I wish you good luck and hope you are getting better and get a life you feel is worth living.

Thanks for your support. i felt like I had the flu for a couple of days then I ewent to bed one night with aches and pains in my legs and woke the next morning a paraplegic. It's awful. Have you gotten used to it?

[woman from Europe]

Originally posted by tmman:

Thanks for your support. i felt like I had the flu for a couple of days then I ewent to bed one night with aches and pains in my legs and woke the next morning a paraplegic. It's awful. Have you gotten used to it?

I have gotten use to it. This is me for better and worse http://sci.rutgers.edu/forum/images/smilies/smile.gif But I still have up and downs. But I do not know another life and I have tried to make the best out of it. And I think I have made it. Now I am tired but I still have to do as good as I can since my small child is only 7 years old.

[TINAMARIE]

I just spent the last couple hours or so reading this thread. I'm really glad I came across it. It was good to read the posts of the people who are still posting now.

Tina
C5-C7 Walking Quad
Aug '03

[This message was edited by TINAMARIE on 07-14-04 at 09:46 PM.]

[darthe]

One of the worst parts of the first few days in the hospital was dealing with the tongue and throat injury my son got from the tube that was inserted in ICU. They scraped off the surface and so every time he started to fall asleep his throat would close up and wake him. I stayed by his side with the ice and sponge lollypop for many days till it healed. It made everything so much worse that it had to be.
Darthe

If you want to double your money, fold it in half and put it back in your pocket. Will Rogers

[shadow]

I am also new to SCI, just on 12 months now since surgery for a malignant spinal cord tumour. Fortunately for me there was no traumatic injury or accident and my case I feel was handled well medically, but fairly poor in the pschycological dept. I walked into to the specialists office for test results and spent the rest of the day looking at chairs, discussing bowel programs, looking at house modifications, it all had to be done in a mad rush because surgery was booked for two days later and their only comment was "you do realise you will be a high level quad, possibly on a vent depending on how much damage has already been done" I felt like I was getting told off for being sick. Fortunately(I think) I ended up a C6/7 incomplete but have very little function and a great deal of spasticity in both legs and my left side. My beef through this whole thing was the off handed comments like, "you should think yourself lucky, it could have been worse you know" lol,a little compassion for the mental state of patients would go a long way. Enough ranting, this is an unreal site, you have given me lots of info and encouragement, keep up the good work and best wishes

[adren_junkie]

Dr. Young,

Hello, Barbara Devine is a good friend of mine and was with me for therapy when I had a spinal cord bridge surgery by Dr. Kao in 98' after a diving accident in Aug. of 96'. I am a C-6 injury that has had alot of success from Kao's surgery. I was wondering if you could point me towards your Carecure website Barbara has mentioned to me and look forward to maybe following your writings and asking a few questions also.

[rickhemi]

Hi,

I'm new here and my family is pretty new to dealing with SCI.

On 7/28/04, my 13 yr old daughter went in for a spinal fusion surgery. Her spine had curved from a 36 degree angle to a 71 angle in about 10 months. So we agreed surgery would be best. Our surgeon used a proceedure that inserts hooks around the spine and connects to a rod to keep the spine as straight as possible while the spine fuses. Well, when she inserted the first hook, the spinal cord monitor went off. Apparently, she "bumped" the cord and caused a contusion at T4.

She called a pediactric neurosurgeon who said to remove the hook and close her up and get her to his hospital (MCV Richmond, VA) right away.

We were there for about 6 days, then went to a Children's Hospital for another 3 weeks. Before Sarah left Children's, she was able to move her left leg from the knee, and also her left toes, but nothing in the right leg.

While @ Children's we looked for a second opinion, because we felt our current ortho surgeon wasn't being very forthright with what exactly happened. She would only say, "We don't know what happened", "The injury was not where I was working", and my favorite "Maybe this was hereditary".

On August 29th, Sarah came home and on the 30th she went back to school. Yes, she is incredible. No wheelchair is going to slow her down.

On Sept. 3rd, we went UVA (Charlottesville, VA) and met with the professor of Ortho Surgery and Pediatric Medical Director. We were very impressed with him and he was very concerned about Sarah's back and recovery. He correctly diagnosed that the scoliosis was really going to take off since the first surgery broke the "spinal wall", and the xray showed her back had progressed to an 85 degree angle. He went on to move around his whole schedule to get Sarah's back fixed ASAP. He thought that the straightening of the spine may also help the cord heal, since it won't be so stressed from the curve.

On Sept. 21st, a successful spinal fusion surgery took place. Her spine was corrected from an 85+ angle down to a 23 angle. Praise God! But, while we where all praying that the cord signal would get stronger as the correction took place, it didn't. It stayed the same (weak).

We spent a week at UVA Med. center and then went into rehab. for another 3+ weeks. Sarah & Mom finally came home for good on 10/21/04 and Sarah went back to school on 10/25.

Sarah does have strong sensations in the rectal area. When she was tested (back in August), it was very painful down there, which the doctors said was a good sign. She can feel the passing of bowel going, but no sensation leading up. We cath her 4 times a day and we're on a bowel mgmt. program. Her left leg seems to be getting stronger (can do squats in the therpy pool) and now she can extend out her right leg from the knee. The spasms in the leg are causing problems though. It's hard for her to transfer herself because her legs want to curl under whenever she tries. She takes 600 mg Nirotin 3x day and is also taking Baklofin 3x for spasms and something else for blatter spasms.

Her trunk area is still weak, but I think I see a little improvement. She has a circle on her tummy where she says it feels normal. Her right foot is somewhat painful to the touch, but her legs overall have settled down pretty good, no more burning and "pins and needles".

Sarah is pretty much back to a full social life. We go to church and she goes to her youth group. She is now an asst. coach on the basketball team she used to play for. She's doing well in school. We go back to UVA for therpy once a week for PT. We're buying an EasyStand for her to stand at home and a therpy table for her to stretch and exercise on.

My question is, how are we doing? Are you encouraged and should we be too? What else can we be doing to help the cord to heal?

Anxious For a Response,

Rick Gilbert

Rick

[This message was edited by rickhemi on 11-02-04 at 02:53 PM.]

[hisamsmith]

I was injured in a freak lawn mower accident on June 28, 1990 when a rod fell out of my apartment complex's mower. The mower picked it up and threw it through my bedroom window. I just happened to be getting dressed for my little league game by the window. The rod lodged itself in my neck severing my artries, sweat glands, and spinal cord at the C-5 level. I was rushed to Methodist Hospital in Indy. I have since heard that 10th street was shut down from my apartment to the hospital so they could get me there in under 10 minutes (which is something they hadn't done for someone who wasn't a race car driver). My parents were questioned by the homoside detechives because they thought I had been shot (my dad wasn't my biological father, they'd only been married for 10 months, and my dad's kids were gone all which pointed a finger at them wanting to kill me). They were also told I would have less than a five percent chance of surviving the night, a 97 % chance of never waking up from the coma, and a 99% chance of being brain damaged. My mother and grandmothers said they prayed for my mind above all else, if I was paralyzed it was okay as long I had my mind. A couple of weeks after the accident my parents were cleared and we discovered the lawn mower was at fault (the manufactor now pays ALL my medical bills and recalled the product). I spent 2 months in ICU on a vent, I trained myself to breathe without it by August 25, 1990, my seventh birthday. I then had 5 hours of therapy daily until Nov. 22, 1990 when I went home and back to school. Then it dropped to 2 hours a day three days a week for two years.
My Life After Injury
During second and third grade I was always in and out of hospitals between UTIs, Kidney infections, and pnemonia I couldn't go to school a lot of the time. I actually missed so much I didn't even get a report card, just a letter saying I had tested out of second grade. Then in fourth grade I stopped going to therapy cause I wanted to be in a play at CTS, a community theater, Whose Life Is It Anyway?, about a woman who gets the court to let her pull the plug on herself after a C-4 SCI. Over the next couple of years I got healthier. I only had 14-18 UTIs and no kidney infections each year. I played pick up baseball games with the neighbor kids, played video games, turned our town house stairs and a well padded laundry basket into a thrill ride and was frankily an average kid except I can't move my legs and pee from a tube (a description my best friend used when she had to write a paper on her best friend in 4th grade). I went to summer camp every year from 11 to 19 at Camp Riley for disabled kids. I climbed trees with aide of hand grips and a wall climbing harness, swam accross the lake, canoed, hiked, camped out (and i had to sent up the tent), and went splunking in a cave (not wheelchair excessible had to crawl or be dragged in a sleeping bag through it). In seventh grade we moved to a small town where everyone knew each other and I was the ONLY mainstreamed disabled student. Then I had rods installed in my back and was out of school for 6 weeks, went back for six weeks and the rods snapped and I had to have them partially removed. This continued for 14 months until they finally took them out Dec. 31, 1997. I was an outcast all through middle school because not only was I different but I wasn't in school long enough to know anyone. In high school it was better. I graduated in May 2002 from high school and was the only student that got a standing oviation (my parents and I were told I would die before my 16 birthday and would never graduate high school). I moved out of my home last year and into my own apartment w/ a friend of mine. Unfortunantly my insurance wouldn't cover nursing aides and my "friend" didn't live up to her responsiblities (I paid rent, bought groceries, and paid utilities and she was supposed to clean the apartment, cook, and do my laundry). I moved back home in April (and am saving $4000 a month in rent and nursing care, my mom does all mine at home) and am opening my own business.
MY CURRENT MEDS
Augmentin 875 mg once a day to prevent UTIs
Baclofen 20 mg 3 times a day for leg spasms
Oxybutynin 5mg 3 times a day for bladder spasms
Prazosin 1mg once a day to prevent autonmic disreflexia
Clonidine .1 mg 2 times a day for back spasms
Cyproheptadine 2mg 4 times a day to increase appietite
Vitamic C 500mg 2 times a day to help repair pressore sore
Iron 325 mg 2 times a day due to anemia
Multi-vitamin 1 tablet a day because of high fat high cal diet
SURGERIES
1. Removeal of rod which cause injury, repair of artries, removeal of sweat glands June 28, 1990
2. Trache July 1990
3. Make Trache larger July 1990
4. Tie left diapham to right so they move together August 1990
5. Put Trache back in after Resident pulls it w/o permission (It had started to close no anithesia was used) Sept. 1990
6. Relocate ureters June 1991
7. G-tube Feb. 1993
8. Replace G-tube w/ button July 1994
9. Postierier Rods Installed Oct. 1995
10. Hip and knee release Oct.1995
11. Repair Postierier Rods Jan. 1996
12. Pic Line Attempt Jan. 1996
13. Central Line Jan. 1996
14. Removal of diseased part of lung during double pnemonia March 1996
15. Removal of central line April 1996
16. Repair Postierier Rods June 1996
17. Attempt of Pic Line June 1996
18. Central Line July 1996
19. Removal of Central Line and G-tube August 1996
20. Removal of Posterier Rods Dec. 31, 1996
21. Bladder Augmetation and Creation of a Matroffinoff (the intestine is used to make second urethra to belly button) August 8, 1997
22. Installing of Anterial Rods Oct. 1998
23. Cut down on Left wrist Oct. 1998
24. Repair of Pressure Sore Dec. 2001
25. Failed Attempt of PICC line (left arm) Dec. 2001
26. PICC line (right arm) Dec. 2001
27. PICC Line (right arm) Oct. 27, 2002 first and couldn't even breathe on my own. I have slowly gotten back feeling and movement since the accident. I spent 6 months in

[pwoodPT]

Hi Patti,
Thanks for sharing your story about your spinal stroke as there aren't many places to access these types of medical stories or tidbits. My 28 y.o. cousin had an incomplete C3/4 anterior spinal artery stroke in November '04. The onset was very similar to yours, including all the same differential diagnosing. It has now been 2 months,and while her sensation (vibration, light touch, position sense,pain and temp) is improving throughout most of her body, breath and motor return below C4 has been very, very slow. Only recently have we seen her upper traps flicker, but on a good note, her head control is getting stronger. She's had pneumonia several times, a collapsed lung, UTI's, etc.... and now they are discussing an attempt to wean her from the ventilator and perhaps introduce her to a sip/puff electric wheelchair. She's scared,and is not in favor of the electric wheelchair, so if you or anyone else out there has some wisdom, I would love to pass it along to my cousin or you can post it directly to her site www.nicolegregory.com (http://www.nicolegregory.com)
Thanks again to all of you actively sharing your story and your thoughts. Pam

[SCI-Nurse]

Pwood, where is your cousin? I hope she is at a good SCI center that really knows what they are doing. Vent weaning is difficult, but if she has some traps (C4) it is possible that she also has good innervation to her diaphragm (C3-5), and should be weanable.

I would not push the power chair too hard...it is a hard lump to swallow for many. Is she getting up in a manual chair now? Present it as a tool to allow her to do her rehab and deal with the deficits she has now including doing independent weight shifts, but not that this is a life sentence. There are other control systems that should be evaluated for her other than just sip and puff as well. This includes chin and head controls. Not everyone likes sip and puff.

(KLD)

Thanks for you words of wisdom. My cousin with the C3 spinal stroke has been at Spaulding Rehab in Boston since Thanksgiving, and only recently got transferred to the Spinal Team for more aggressive therapy. Most of her time has been spent dealing with pneumonia, MIE's and cumbersome bed to wheelchair transfers, and finally sitting in a wheelchair about 2 1/2 hours a day. I believe that Spaulding does well with ventilator care, I just hope they are good with weaning. Most recently, the social worker began talking about insurance concerns, another stress into an already miserable situation. If you have any other suggestions, I will pass them along to my family. I will be chatting with them this evening. Thanks again. Pwood

[lpearl]

I'm new here, in fact I've never been part of any chat room before. I've been reading Dr. Young's articles since about May, when I found them while I was surfing the web and thought that they were excellent and helpful. He is remarkable.

The hard thing for me lately is the anger and depression. I am only just 50, never smoked, not overweight, and in good health up until this happened on April 2, 2004. I was sitting in a stressful meeting and I felt a funny sizzling sensation in my lower right abdomen. When I stood up my entire right leg was numb hip to toes, with pins & needles, and very weak. (Don't go to meetings, right?) It didn't go away. I couldn't walk for a few weeks and the parasthesia was awful. Two weeks in I had a positive Babinski, which resolved back to normal in October. I think that's good, but I'm not sure.

I had a long series of different doctors & tests, each offering a new and frightening potential diagnosis, including herniated disk, RSD, MS, viral infection, and finally a probable small spinal cord stroke. Nothing showed up on any MRI, MRA scans, or EMG's. The not knowing was awful; the doctor's weren't so helpful (just perplexed I guess), and so every new possibility sent me off on my own in search of more information and resulted in terror and confusion. I still don't know for sure that it was a stroke since there is no hard evidence except my succession of symptoms, and therefore, treatment & outcome is just an educated guess.

In the overall scheme of things, I know that I am lucky. With PT and determination I have decent motor recovery--I can walk and I limp only slightly now (worse when I'm fatigued). However I am miserable with excess tone and numb spots, plus frequent nerve pain and allodynia in my back. I need to find a new neurologist, one who understands about needing to work toward the proper balance of meds (currently on low doses of Neurontin, Baclofen & Zanaflex, with nearly every listed side effect to some degree), but I'm really not sure how to find anyone well-versed in this. My current guy may be a good neuro, but appears to be puzzled about how to approach the medication side.

I try to stay positive, but I am angry and bewildered that this happened and depressed a lot. It is difficult to talk to anyone about it--I feel sometimes as though my injury is another person who tags along wherever I go and tries to monopolize the conversation. My husband tries but just doesn't get it. I hate having to say "I can't" and I hate feeling damaged. I cry a lot and then feel guilty because there are so many people far worse off than me. But this did happen to me, totally out of the blue, changing my plans and feelings about my future, and dealing with it is a struggle.

I registered on this site so that maybe I could find some other people who struggle with the same feelings. I know we'll all still struggle, but not feeling alone is part of the battle.

[Chris Chappell]

Lyndy - Sorry you've joined us but welcome.

You made a profound, wickedly smart statement when you said "I feel sometimes as though my injury is another person who tags along wherever I go and monopolizes the conversation".

I completely agree. Having to say "I can't" is very difficult and, for me, only seems to get harder and more cumbersome.

Hang in there Lyndy. Vent, rant, rage, read, listen, speak - its all good, very therapeutic and necessary when expressing the human condition.

Best of everything Lyndy. http://sci.rutgers.edu/forum/images/smilies/smile.gif

[SCI-Nurse]

Lyndy, you might want to seek out a physiatrist who specializes in SCI instead of a neurologist. They are more familiar with the sequelea of SCI and able to help you deal with any long term issues such as you describe. You can call the Kessler Rehab Center in NJ for a referral.

(KLD)

[lpearl]

Thank you so much for that advice; I really didn't know what specialty area to look for--the neuro wasn't getting it and pain management didn't seem quite right either. I am going to call Kessler for a referral this morning. I'd thought about calling them previously, but hadn't a clue what/how to ask.

And thanks for listening. I'll let you know how it turns out.

Lyndy

[lpearl]

Hi Obed,

What a very kind response. As you know all too well I imagine, it is difficult for those outside of this community to understand the roller coaster of emotions and reactions that this elicits. But you do understand, and although unfortunately it is as a member yourself, I am grateful that you posted back to me. Like I said, not feeling alone is a big part of the battle.

How do we get more new SCI's to find this site?

Lyndy

[Empress]

My husband suffered a T10 complete SCI on Dec 9, 2003. He was at work, installing a computer cable connection through a ceiling hole. He had one foot on a ladder and one foot on an I beam and slipped, falling astradle a metal I beam. He has Achondroplasia Dwarfism with the accompanying pelvic tilt. When he landed on the I beam, he landed on the knife edge of his pelvis and apparently it severely compressed his spine. At the time, he though he was just severely "racked" as he landed directly on his testicles. He finished out the day and came home. Late that evening, he lost all feeling in his legs, but could still walk, although he needed assistance because he was afraid of falling. We managed to get him in bed, but by morning he was in severe pain and could not feel or move his legs. I called a friend who is an EMT who helped me get him out of the bed, and this friend called the ambulance a second time... they had blown off my call as a crank because of my husband's name... Charley Brown :P He was familiar with the ambulance people and convinced them that it was a real call, so they came and got my husband and took him to the ER. At the ER, they put a foley cath in him because he was unable to urinate and was overfull. Unfortunately, we later found out that the foley had been over inflated, which in the end caused bladder damage. They transferred him to Hillcrest Memorial Hospital in Tulsa, and he had surgery there. They did a Laminectomy and Discesctomy there, but there was partial severing at T4 and L1 and complete severing at T10. He had ruptured 3 disks into his spinal cord and the problem was exacerbated because of spinal stenosis due to his Dwarfism. I went up and joined him the day of his surgery and stayed with him until he came home. I don't honestly remember how many days he was in the hospital itself, or rehab, other than thathe went home christmas eve. I CAN tell you that both in the hospital and in the rehab center, if I hadn't been with him, he would not have gotten as good of treatment as he did. As it was I have complaints about both places. For example, the day after his surgery, a nurse walked into his room and chewed him out for not being up and trying to walk. I looked at her and asked her how in the he** he was supposed to be up walking with complete spinal severing at T10. She informed me that he was in there for a Laminectomy, and I said that was only part of what was done and that she needed to read his chart before she came in with statements like that. Many times, I had to chase the nurses down for him to get his meds, more than once they informed me that he would have to wait on a cath (this was after the Foley was removed and they found out that it had been over inflated and caused permanent damage to his bladder)and it had been over 6 hours since his last Cath and the dr's orders were for him to be cathed every 4 hours. I finally demanded that they teach me to cath him so I wouldn't have to wait on the nurses. The only things they did with him in rehab was to get him up on parallel bars once, and teach him transfers. One of the nurses in the rehab was actually a good nurse and taught me not only how to cath him, but also how to check him for pressure sores, assist with transfers, and what to do if he fell during a transfer. They told me that if he started to fall during a transfer, I was to help guide him if possible, but mostly just step back and let him fall because he was more likely to hurt himself trying to avoid hurting me than he was to injure himself in the fall.

After going home Christmas Eve, he began outatient rehab therapy, which did him much more good than anything they did with him in the hospital. That Physical therapist taught me exercises to work with him on, Range of motion exercises, exercises to keep him from losing muscles to atrophy, massages, etc...

During this physical therapy, he began having issues with pain in his shoulders and losing feeling in his hands and forearms. The final guess on the cause (because after all their testing they still couldn't find anything that could be causing it) was that due to his Dwarfism, his muscles are denser than usual, and since he was using them to assist him with walking with forearm crutches, and pushing his wheelchair, that they were swelling and putting pressure on nerves and that is why he was losing feeling. He was told to stop using the forearm crutches and they put him in a powerchair to prevent any more damage to his shoulders and rotator cuffs. Before they removed him from the forearm crutches, he was walking 125 feet with a leg brace and the crutches. Now he is limited to his powerchair and occasional forearm crutch use against dr advice when absolutely necessary for access to private houses.

I have read all of the posts here, and I agree that often the focus is on the injured person and the rest of the family is forgotten. Counseling or therapy is beneficial not only to the injured person, but also to the family. I am lucky that I have a Master's degree in counseling and understand the emotional issues that are involved, and my husband has had nearly as many counseling courses as I have, so we counsel each other. I'm not saying that we don't have our bad days, but we both know what's behind them and don't take them personally, knowing it's just letting off steam and dealing with issues that we never thought we'd have to deal with. I know that things should have and could have been done differently, but I didn't know what needed to be done to limit the injury, and we didn't know the extent of the injury until the following day. I did advocate for him while in the hospital and rehab unit very aggressively, although I always tried to be polite unless they ignored us or pushed us off.

[Lisa P]

Like Lyndy I'm brand new to this forum as well. I, too, have never participated in a chat room and came upon Dr. Wise Young's articles on the web and found them enormously helpful. Although my spinal cord injury is different (a T12 incomplete), Lyndy could be describing my mood. My accident happened 8 weeks ago, on March 29, when I took a mistep in my attic and fell through the opening for the attic fan, landing on the stairs about 15 feet below. For the first six or seven weeks, I was tremendously positive, extremely appreciative that I could walk, albeit slowly and sometimes with a limp, talk etc. I was also excited when some feeling came back in parts of my feet and parts of my buttocks. I'm still grateful, but for the last week or so, I have cried at the drop of a hat, feel all the disabilites are indeed like an extra person who has come to live with me, and wonder if I am seeing the right doctors, doing the right exercise, taking the right medications, etc. I feel enormous pressure like a vise around my pelvic area and don't know whether it is spasm or neuropathy. I'm taking 60 mg of neuronton a day and the doctor just put me on baclofen last night. It feels like my disabilities have come to dominate my conversations with my husband. He is steadfastly upbeat and seems convinced that all my sensations and motor function will return, and while I am hopeful, I am trying to be realistic. Being on this forum and knowing others are going through similar trying times is definitely helpful. If anyone has a thought as to what I should be doing please share it

Originally posted by Lyndy:

I'm new here, in fact I've never been part of any chat room before. I've been reading Dr. Young's articles since about May, when I found them while I was surfing the web and thought that they were excellent and helpful. He is remarkable.

The hard thing for me lately is the anger and depression. I am only just 50, never smoked, not overweight, and in good health up until this happened on April 2, 2004. I was sitting in a stressful meeting and I felt a funny sizzling sensation in my lower right abdomen. When I stood up my entire right leg was numb hip to toes, with pins & needles, and very weak. (Don't go to meetings, right?) It didn't go away. I couldn't walk for a few weeks and the parasthesia was awful. Two weeks in I had a positive Babinski, which resolved back to normal in October. I think that's good, but I'm not sure.

I had a long series of different doctors & tests, each offering a new and frightening potential diagnosis, including herniated disk, RSD, MS, viral infection, and finally a probable small spinal cord stroke. Nothing showed up on any MRI, MRA scans, or EMG's. The not knowing was awful; the doctor's weren't so helpful (just perplexed I guess), and so every new possibility sent me off on my own in search of more information and resulted in terror and confusion. I still don't know for sure that it was a stroke since there is no hard evidence except my succession of symptoms, and therefore, treatment & outcome is just an educated guess.

In the overall scheme of things, I know that I am lucky. With PT and determination I have decent motor recovery--I can walk and I limp only slightly now (worse when I'm fatigued). However I am miserable with excess tone and numb spots, plus frequent nerve pain and allodynia in my back. I need to find a new neurologist, one who understands about needing to work toward the proper balance of meds (currently on low doses of Neurontin, Baclofen & Zanaflex, with nearly every listed side effect to some degree), but I'm really not sure how to find anyone well-versed in this. My current guy may be a good neuro, but appears to be puzzled about how to approach the medication side.

I try to stay positive, but I am angry and bewildered that this happened and depressed a lot. It is difficult to talk to anyone about it--I feel sometimes as though my injury is another person who tags along wherever I go and tries to monopolize the conversation. My husband tries but just doesn't get it. I hate having to say "I can't" and I hate feeling damaged. I cry a lot and then feel guilty because there are so many people far worse off than me. But this did happen to me, totally out of the blue, changing my plans and feelings about my future, and dealing with it is a struggle.

I registered on this site so that maybe I could find some other people who struggle with the same feelings. I know we'll all still struggle, but not feeling alone is part of the battle.

[mimij5]

My son was skiing 2/13/05 when the binding on his ski pre-released and he was thrown head first into a tree. Fortunately, he was wearing a helmet or he would be dead. As it is, his spinal column was compressed at the C-7/T-1 level and he is currently Asia-A (complete) from the chest down.
I am recounting our experience here because, altho he ultimately received, I believe, the best of medical care, I have very mixed feelings about the advise and support that we received from his initial neurosurgeon.
As most of you who will be reading this surely understand, there is no more terrifying or loney experience than those first days following a SCI injury. Families are pretty much infantile in their dependence on the expertise and sensitivity of the hopital caregivers at all levels.
Our first meeting with my son's surgeon happened the day after his accident, as we had to fly across the country to be with him. This doctor's emphatic position and advise to us was that we'd all better accept that our son would never walk again. That we should just accept it and get on with his life as a Quad. He told us that there was absolutely NO cure or treatment anywhere in the world for SCI. If there was, he would know about it within a day. His advise was just to take his word for it and not waste our time and money chasing a cure.
Ironically, at a facility 1/2 hour away by plane, the Proneuron treatment study was being conducted. My son was a perfect candidate. I can not understand why this doctor didn't tell us. Certainly, he must have known about it. As it happened, we learned about the study purely by chance and my son became a participant at the very last minute.
So, my advise to new SCI families is to do your homework on sites like Curecare, Google, etc. Get educated as hard and as fast as you can. Do not listen to the nay-sayers, even if they have an MDXYZ after their name. There is hope, there are trials and promising research.
Best of luck to you all.

[yvonne]

my brother is c5-6, complete since 8-14-2000. i flew immediately to wisconsin from tennessee and stayed 6 months. luckily i am a nurse and not easily cowed by medical personnel. i know he wouldn't be here if he hadn't had an advocate there. he had pneumonia 4 times, sepsis and bedsores. i had to call up doctor -nurse care conferences to get wound care for the bedsores. i had to do cpr, since the nurses at one place had turned off the alarms and didn't know his o2 sat was <70%. i had to teach respiratory care personnel how to quad cough him. i had to bath him because the aides wouldn't take off ted stockings to check and clean legs and feet. i had to threaten legally to get needed stabilization surgery. i was told to put him in a nursing home, i was told that insurance wouldn't pay for any supplies at all. they kept him on so many tranq's it was impossible to judge his mental status or for him to take part in any reab til i weaned him off myself. SO, i totally agree, each person has to have an advocate, someone who cares to see them thru, someone who can be calm and can stand up for their rights. one resident physiatrist told my brother that not only would he never walk or have any mobility at all, he would never be a candidate for "that experimental stuff that is 20 years away". it wasn't til the third try at rehab before the progress began. hope, advocacy and prescence all make the difference.once the acute phase is past, patience and persistence is key. one very important tool is keeping a journal, write down everything, progress, insurance medical information because it will be invaluable at some point to be able to calmly give dates to insurance companies, recall events for future doctors, for medicare, and for the patient themslf to read since many times they have been in coma or shock or sedated and don't remember events. please know that it gets better, the acute phase is the time for support and advocacyHow did you get him in a Rehab after they told you nursing home. The Dr's told me to put my Grandfather in a nursing home and that just is not happening.

[SCI-Nurse]

Yvonne, if your grandfather is in the USA and a military veteran, you should be trying to get him into a VA SCI Center. We get many older veterans who are turned down by traditional SCI rehab centers, and many do very well. If he is, let us know and we can help you with this process.


(KLD)

[yvonne]

SCINURSE I want him in a rehab the way everyone else gets the chance. Age discrimination should not be an issue and I feel it is. Thank you so much though for your help. If you have any other advice please it would be much appreciated. Thanks

[yvonne]

Yvonne, if your grandfather is in the USA and a military veteran, you should be trying to get him into a VA SCI Center. We get many older veterans who are turned down by traditional SCI rehab centers, and many do very well. If he is, let us know and we can help you with this process.


(KLD)I would prefer to put him in a traditional rehab but maybe it is worth a try in case he is turned down by everyone. I would love it if you would be able to direct me in the rite direction. I will not give up on regular rehabs though.
Thank You for your response and time.
Yvonne

[c0ldhart]

If your grandfather is a vet and you can take advantage of that option... DO IT. The VA SCI wards are very good, especially since the influx of funds and focus of injured soldiers coming from Iraq. My boyfriend is in Tampa's and he is doing AMAZINGLY well. This is his 3rd hospital... from a German one, to two different military ones, and now at the VA, the VA is leaps and bounds better for him than all of the others combined. First off, his physical therapy is very aggressive 6 days a week... no weekends here. Also, his nursing staff is really good, the nurses in the ward are specialized in SCIs, so it is very rare when one walks in the door that doesn't know what is going on.

I know that the VA have had a bad rap in the past and they've earned it, but honestly, at least with the SCI wards... they are modern, up to date with current practices, and they are not a nursing home. In the 4 hospitals that D has been in, this is the only one where ALL of the nurses are positive and make such an effort to explain to him what is going on, and to teach him what he needs to know about his body that will help in the real world. It has really given me a good impression of the VA system.

IF this is an option for you... LOOK INTO IT. Even if the rest of the hospital looks like dismal pit, most likely the SCI ward is much more modern. There are only a few VA-SCI wards in the US and in the last 5 years they've put a lot of funds and effort into modernizing them. It's worth looking into.

All in all, good luck.

[yvonne]

Coldhart Thank You so much for that information about your boyfreind in the Vet sci program. You made me feel a lot better about it and am definetly looking into it. If you have any tips or how to go about it I would appreciate it.
Thanks again and good luck to you guys as well.

[c0ldhart]

Since he is active duty entrance is different for him, but if I was you, I would go online, look up va.org and see what they have...

They might even have the necessary forms online, too. If all else fails, call, call anyone, they have the usual slew of social workers and staff just like other hospitals, but are totally oriented to dealing with situations such as yours.

Good luck to you and your grandfather and I hope things work out for you. If you have anymore questions, feel free to email me.

[JerryF504]

My injury is from a motocross accident on July 2nd 2005. It was diagnosed as a compression fracture of T5, which left me with a complete T4 level injury. Initially I went in a helicopter to Lafyette General hospital where they did an MRI & some Xrays. They told me that I needed surgery right away & the closest place that could do it right away was the LSU medical center in Shreveport, so I went there the same day. Early the next morning I went into surgery, where they put rods & screws from T4 to T8. The Dr. said that they removed bone from my spinal cord, but I don't think that's possible from the back? :confused: Well from there I went to Touro infirmary (in New Orleans) for rehab. Three days before discharge hurricane Katrina hit & I was evacuated 3 days after to Terrebone General. I finally got home about a week ago & here I am trying to find hope for a cure on the internet.

[SCI-Nurse]

All VA Medical Centers are required to have a social worker who functions as the Spinal Cord Injury Coordinator. This person is responsible for assuring that local SCI veterans are linked into the hub-and-spokes model of SCI care in the VA system. If you contact this person at your local VA, they will arrange to help you with eligibility applications, and also arrange for travel to the designated VA SCI Center (there are 20 in the USA) for rehab or any specialty SCI care needs. Locally the SCI coordinator will often work with a VA Support Clinic which consists of a team of a nurse, physician and social worker who have undergone special national training as well as on-going training at the hub center, and serve as the "spoke" clinic for day-to-day care needs.

Veterans of military service with an honorable discharge are eligible for VA care. Veterans do NOT have to be service connected. For some, there is a small co-payment. All SCI/D veterans should be rated Priority 4 or lower, and it is very important to be sure that this is noted (the lower the number, the higher the priority).

You can get to the VA website at www.va.gov (http://www.va.gov/), or more directly at this URL: http://www1.va.gov/opa/fact/spinalcfs.html but you may find more help more readily by dealing with the National Service Officer for your area at the Paralyzed Veterans of America www.pva.org (http://www.pva.org/) All veterans with spinal cord injury or disease are eligible for free PVA membership. The NSO works for the PVA, not the VA, and their job is to serve as the SCI/D veteran's advocate with the VA. They can help with eligiblity issues, benefits, and help file appeals and necessary paperwork for you.

As coldheart noted, VA SCI Centers have staff (physicians, nurses, therapists, counselors) who have special expertise in SCI. Equipment available is of the best quality and state of the art, unlike what you will find with Medicare or many insurances. Active duty patients with SCI/D should be referred to their designated VA SCI Center within 3 days of their injury (per DOD regulations).

KLD

[darrel]

well, my story is not as bad as most of you but here goes.It was the 24 of Jan.'06, I got off work and wasfeeling like crap had the flue or some walking crud.I took some cold/flue med., nyquil and was about to lay down when a friend called said that he needed help skinning some deer from the last openning ofthe year it had been freezing out so the deer were good, my G/F and me show up out at his hous and we went to the barn, and saw that he had nine deer hanging. I set up our little area with the coolers,knifes,ect.. I had skinned the first deer and opened my first beer, and started drinking it, not very fast because I still didn't feel that good, as I finished quartering the deer, I finished my beer. We were kidding around talking smak to each other, the other people that was to so never did, so I offered to stick around and do a couple more to help my friend and his wife out,itwas still early so I started another deer, as I began the first cut the pully set up slipped and the deer fell, so I grabbed a latter that was there and climbed up to get the end of the rope that went up into the rafters, all I remember was reaching out for that rope. the next thing that happened was I found my self on the floor lying face down in a puddle of blood. I went to get up and found that I couldn't move, that was when I realized I was messed up,I asked for help getting up and every one thought I was kidding (like normal) then I told them I was serius that I can't move they came over and rolled me over and got a bunch of paper towels for my face. they asked if I wanted them to call an ambelence I told them it would take two hours for them to get there, load me in the van, my G/F can take me, I'll be there in 30 min.
Now this is the part that I still don't remember, my G/F tells this as she saw it, she said that I was reaching for the rope and then I through my arms out and did a nose dive off the ladder and when I hit face first my body went over my head and bounced off the deer.
we got to the hospital and she ran in for help, they started yelling at her for me being in the van, I finally got their attention and explained the sittuation, they put a collar on me got the flat board under me and of to the E.R. they take their x-rays, CT scan and are trying to get lifeflight out from Peoria,Il it is about 30-60 min before they got there due to the weather(40-50mph winds). I get to Peoria after the worst flight I had ever took. They start asking me all sorts of questions and I'm coherant the hole time,they ask if it is okay for the students to look in and do their assesment I tell them yes,just why can't I move? why can't I feel anything? they do their x-rays and then the CT scan from hell starts. I'm not a big fan of hospitals and this is a prime reason. they have me in this thing and they are moving me in all sorts of posisions, trying to get my arms above my head, now I'm starting to feel pain that I have never felt before, they are trying to tell me I have broken both my clavicals. I'm argueing with them that they aren't that they were broke years ago. they don't listen or they just use this opertunity to charge me an extra 10k to have this other Dr.come in and more x-rays, and back to the CT scan. to find out that I don't have broken clavicals, then they have the nerve to ask if I had ever broke them? I had a few choice words for them and they tell me that I didn't need to get angry. needless to say that got more of a response out of me.they take me to cardiac ICU and I have these people coming in 3-4 deep poking me and asking if I can feel this if I can feel that. this went on about5 or 6 times and I'm not getting any type of answers after 6 hours of not knowing this lonely young man walks up and starts poking and prodding and this is when I finally had enough and told him that "I'm tired of you Doogie Howsers poking me and to get the f*** away." well that was the first time I had somebody talk to me directly, he informs me that he is my Dr.and that he doesn't care to be called names. and that they won't know how much damage there is until the swelling goes down some and they can get me in for a MRI, maybe 3-4 days. After about 6 more hours they move me to a room. Now I recognize this area far to well, this is were my Grandparents had been, my father had been. holy crap,I'm up here were I saw most of my family for the last time, now the shock is whereing off, now I'm starting to get scared. after some more morphene and an hour of staring at the ceiling another Dr.comes in with his student, and they start stiching my head (middle of one eyebrow to the middle of the other, 15 in all) he explains to me that my nose is broke in 3 places, my pallet is broke then he realizes that I have several scars and has me open my mouth, that is when he says you didn't tell them you have a cleft pallet? no, nobody asked. that was when he told me that my pallet had only shifted, and that I may need surgery on it and reconstructive surgery on my nose. well i'm moved to another room after awhile, buy this time I'm beat, the morphine is hitting home and I don't care any more,I nodded off. I woke up acouple of hours later to find that the room they had moved me to just had to be the room my Granddad was in, now it is time to spaz. I got them to move me and they finally put me in the nero ward sat there for 3days got my MRI done. another Dr. comes in and starts mumbling a bunch of stuff that I dont understand other than he's going to operate on my neck and cut 4 bones,scrape the inside of them and put plates in to hold them. and then says that I'll never be able to work again. this is just a blow to me, a workaholic not able to work. we ask if I'll ever walk and that was when he informed me that I wouldn't walk out of the hospital and that I would be lucky to see 70% return. three weeks later after busting my but in rehab I did learn to walk all over again, the Dr. was right I did not walk out of there,they woudn't let me but I did walk around the van and with help I got in. aweek later I was back and had the lapenectomy C3-C6 when I arrived at the nero ward I was C5/6 I have gone through 18mo. of theropy and now I am at a C6 level. I can dress my self most days with out help, I have learned to manage a fork and knife, I can write with the aid of grips, I ended up with 70% use of my left side and 50# of grip. the left side I have 30%use 5# of grip, and spaticity so bad that I can't open my right hand, my right foot drops and I can't move it I can lift the right leg about 6" off the floor. I did have a silent heart attack that night we figure the fall is what brought me back. it has been 21mo.now and next week I can finally have the reconstructive on my nose done. I am scheduled for testing for the baclofen pump in two weeks with any luck it will help. I am able to walk about 100 yards with the assistance of a quad cane.

[quadvet]

Active duty patients with SCI/D should be referred to their designated VA SCI Center within 3 days of their injury (per DOD regulations).

KLD WHAT!!?!?? When did this become regulation KLD??

[SCI-Nurse]

There has been a DOD/VA MOU to this regard since at least 1988. The MOU has been re-written and revised at least 3 times since then. I can get you a copy if you want it.

Of course it may be longer than 3 days before the VA can admit the patient (travel distance, medical stability for travel, etc.) but the appropriate VA SCI center (closest to the patient's home of record or place of desired residence after discharge) MUST be notified of the SCI within that time frame so they can start working on getting the patient into the appropriate VA SCI Center.

There is poor enforcement through the DOD though, so the PVA is currently working on trying to get this legislated as law, which would give it more teeth and would create penalties for failure to comply.

(KLD)

[quadvet]

There has been a DOD/VA MOU to this regard since at least 1988. The MOU has been re-written and revised at least 3 times since then. I can get you a copy if you want it.

Of course it may be longer than 3 days before the VA can admit the patient (travel distance, medical stability for travel, etc.) but the appropriate VA SCI center (closest to the patient's home of record or place of desired residence after discharge) MUST be notified of the SCI within that time frame so they can start working on getting the patient into the appropriate VA SCI Center.

There is poor enforcement through the DOD though, so the PVA is currently working on trying to get this legislated as law, which would give it more teeth and would create penalties for failure to comply.

(KLD)Well, seeing as how it's over 17 years late, I don't think I need a copy of the MOU (memorandum of understanding?) KLD, thanks anyway.

This sure does BURN ME UP though! And, seeing as this thread is regarding acute spinal cord experiences, I will share mine. And I'll be damned if this isn't page 13! Lots of 13's in my life, bad ones. Anyway, maybe other veterans can learn from my experiences.

I broke my neck at Ft. Stewart, GA, on post, on duty. The rather large post hospital didn't know what to do with me. This wasn't the beginning of what went wrong, but was a most important mistake. I told this story before.

From Ft. Stewart it is 40 miles to Savannah where a small very inexperienced hospital was more than happy to take me on and charge the military top dollar. But it is only 100 miles to Augusta Georgia, where there is a VA SCI Center [where I should have gone]. The helicopter flight might have taken 6 minutes more to make the trip to Augusta where I would have received the treatment I was entitled to, and needed. Treatment that, without, led to many complications that wouldn't have happened at the VA. I got a sore to the bone on my coccyx, laying on a standard hospital mattress. They were treating it with "bourbon & bismuth" packs, which I never have identified. I had a pulmonary embolism, pneumonia, a staph infection and other complications. It was a catholic hospital and they were real nice but I sure wish I knew then what I know now!! Curses, don't we all ?


ETA: Oh, after 45 days in ICU in Savannah I was taken on a army stretcher like on M*A*S*H to an airport in Augusta of all places ! where I was flown to Seattle VA SCI Center on an Air Force flying hospital. The flight took two days, and landed and took off from 4 military bases. All the while I was laying flat on that hard stretcher. It was hell after laying totally still for 45 days.

KLD, who can I sue http://i88.photobucket.com/albums/k170/Valiantdogs/Smileycrackup.gif?

Well thanks for the info, I hope others learn from it.

Matt

[SCI-Nurse]

Since VA hospitals are not trauma centers, we still would not have admitted you immediately after the accident, but certainly would have taken you after the initial trauma. Were you asked about going to either Augusta (then move later to Seattle) or Seattle within a few days after your injury?

Also, while we used to have to live with those nightmare 4-7 day coast-to-coast Airforce Med-Evac flights, the most recent version of the MOU requires that the accepting VA hospital determine for the military the safest and most appropriate method of transporting the SCI soldier or sailor, so we nearly always require them to send either direct (no stops) Med-Evac or pay for private air ambulance, which has made a world of difference.

You are right...too late to sue the small hospital you were taken to (3-7 years is usually the time limit for adults).

(KLD)

[quad79]

My acute rehab sory..
...It was hell.
I'm glad I had a damn good OT though.
I was in Acute rehab for 8 weeks and then transferred to a nursing home/rehab facility for another 8 weeks(seeing what I saw there made me appreciate just having a SCI!)
Anyways, I came home for a month , then went to stay @ a DRS facilty for another 8 weeks . I had pretty much plateued by then, but atleast I learned to drive.
Wow. 6 months of rehab-I should be SUPER QUAD by now, but I'm
far from it.:p
Overall, I think a good OT is the most important, you need to know how to live.
-Shannon

[quadvet]

Since VA hospitals are not trauma centers, we still would not have admitted you immediately after the accident, but certainly would have taken you after the initial trauma. Were you asked about going to either Augusta (then move later to Seattle) or Seattle within a few days after your injury?

Also, while we used to have to live with those nightmare 4-7 day coast-to-coast Airforce Med-Evac flights, the most recent version of the MOU requires that the accepting VA hospital determine for the military the safest and most appropriate method of transporting the SCI soldier or sailor, so we nearly always require them to send either direct (no stops) Med-Evac or pay for private air ambulance, which has made a world of difference.

You are right...too late to sue the small hospital you were taken to (3-7 years is usually the time limit for adults).

(KLD)I wouldn't sue anyone, just live and learn and hope to prevent future such incidences.

I don't recall being asked where I would like to go, or even being told what was available. Some time towards the end of my 45 days in ICU there, I was told that the VA in Portland, OR would be taking care of me for rehab (80 miles from home vs 250 to Seattle, I was happy). But of course that wasn't true and I found out a few days prior to leaving I'd be going to Seattle. By that time it didn't matter how far I had to go, other than they removed my Philadelphia collar for the flight- the VA didn't like that. Thank God they fixed that Medevac problem.

Now, the only thing that really bothers me is wondering what trauma center I should have gone to, rather than St. Joseph's (http://www.sjchs.org/) in Savannah. I don't remember the doctors, but the nurses were real nice, especially considering my complications. They let my three toddler daughters visit within the first few weeks. I had a new litter of puppies they let my brother sneak a few in for a visit. The nurses enjoyed it too. I really liked them, but sure would have liked to been in a better qualified trauma center. Dang it. Thanks KLD.


Matt