How many people are "walking quads"?

[Wise Young]

Many people with "incomplete" spinal cord injuries recover substantial function, often to the point of walking. I wonder how many of our members are walking quads/paras? Can you describe your experience?

[gvinton]

C5/6 walking quad here, 19 months post. I started walking in rehab at about 4 weeks. I've been very fortunate and have had a very significant recovery.

Most recently I'm actually starting to run fairly well. I work out often and am still seeing improvements in my strength and agility. I've posted details of my recovery here many times but if anyone would like to talk feel free to email me.

Gvinton:

Your story is very inspirational. You are very blessed to have such a speedy recovery.

I do not have your e-mail address to send this to you privately so I will have to ask you here. Did the doctors tell you that you would never walk again? Was your injury complete or incomplete? I'm new to SCI so I have a lot of questions. If you wouldn't mind sending me an e-mail I would love a response. My address is kiwis7@aol.com.

Thank you and I look forward to hearing from you.

[gvinton]

Big Sister,

Upon arrival in the ER they initially thought I may be complete but changed this pretty quickly. Prior to my surgery on the second day they told my whole family that I would likely never walk again...

By the way, you can get my email address by clicking on the icon above my avatar (picture) and viewing my "public profile".

[brucealexander]

Before reading my post please note that I was injured in 1976 treatment has changed so much.

I was originally diagnosed complete. The doctors drilled holes in my scalp and placed me in a halo type of traction with weights till the fracture was stable. About 8 weeks.
It was during this time my new bride said sorry and good bye. I was depressed but gained new strength from some where.
Physiotherapists would streach my muscles daily. After a few weeks the big toe on my right foot regained feeling and gradually movement. In time that progressed to involve both legs.
My diagnoses changed to incomplete C5/6 brown sequard.
Slowly I regained sensation in my right arm then the left.
One day a cleaner banged the weights with her mop. That night the halo fell out and crashed to the floor. Lucky the injury was stable and I was placed in a full neck and chest collar.
Over the next 3 or 4 months I regained power to walk with a stick and ditch the chair. It was probably 6 months and I was walking unaided.
Since then I have completed a full circle.
Now I am only just able to walk aided. I recently progressed to an electric wheelchair.
A syrinx and pain has taken over. Three surgical procedures to help remove adhesions were usless.
After a recent MRI it was interesting to read that doctors are unable to understand how with my injuries I am able to move at all.
Because of our injuries we work harder with what function we regain if any. In doing so our bodies seem to wear out quicker then AB. One neuro told me the axons break down. I know a para from my era who cannot use his arms because he has worn out his shoulders.
In closing Doctor Young I asked your advice a short time ago regarding surgery. After receiving that advice I went ahead on 7/3/03. Adhesions were dethered from the front of the cord as was a piece of silicon put there in another procedure. The pain still persists so I guess I won't die wondering.
As a walking incomplete quad it is interesting to acknowledge the following similarities. Incontinence, lack of sensation, touch, dysfuctional erections etc. For some unexplained reason a few with spinal injury walk.

Pops

[bruce]

I'm C6 and also was initially diagnosed as complete. Fortunately they didn't tell me, they only tortured my wife with that information. I had shattered my C6 and had a C6/7 dislocation. The ER doc told her to expect that I wouldn't feel or move anything below my chest.

The day after my accident, a doctor did a complete neurological exam (I have a copy of the chart, she gave me an ASIA B score). Afterwards, she was talking to another Dr. with my wife present, and said: "I think he leaves here in 12 weeks a complete quad." The other Dr. said: "Well, I'm not so sure," and he was right.

At a month post I was "upgraded" to ASIA C, as I had recovered significant movement in my left leg. A two months post, I got a flicker of movement in my right leg. At four months post, during my first exam with my outpatient rehab doctor, he diagnosed me with Brown-Sequard syndrome and told me that I would most likely walk again, if I worked my ass off. So I did.

At nine months, I could walk in parallel bars with a KAFO, and shortly thereafter short distances with a walker. I couldn't, however, stand by myself .. I had to have someone hoist me to my feet.

At about a year I moved to an ASIA D score. At a year-and-a-half, I could stand from a normal-height chair with a walker and walk without any bracing. This was the beginning of functional walking for me.

Today at a bit over two-years post, I can walk reasonably well with a walker or crutches. I can go up and down stairs, and spend most of the time out of the chair. For example, today I parked the chair at 7:30 am when I left the house and haven't used it since. If I have to go somewhere far or fast, then I use it.

While I haven't used a brace for quite a while, I am getting an AFO made because as I walk faster and farther, my weaker right leg has some problems with toe drag and knee hyperextension especially as it gets tired.

I have walked with a cane in controlled conditions. My PT thinks that in another year I should be using the cane out there in the world as I continue to work out and get stronger. Actually my biggest challenge is strengthening my trunk muscles, particularly my hip extensors.

Pops, your story is a cautionary one. I have wondered how we will hold up as we age. I'm 47 now and want to keep everything I've got for as long as I can, as we all do, huh?

[Wise Young]

Bump. With only 33 people responding, over 50% of people who were "incomplete" initially after spinal cord injury are now walking. Come, all people who were "incomplete", i.e. ASIA B, C, or D should vote. People who had "complete" but are walking should also be voting. I know that there are some of you out there. Wise.

[SCI-Nurse]

I don't think a lot of the regular forum users come to this forum. I will post a link here from the Life forum and see if we can't get more responses.

(KLD)

[Wise Young]

KLD, thanks. Based on these results, it looks as if about half the people with "incomplete" injuries recovered walking, most more than a year after injury. None of people with so-called "complete" spinal cord injuries recovered walking. You know, it is really interesting that you cannot find this information published anywhere in the medical literature. I think that if I had been asked before this how many people walked after incomplete spinal cord injury, I would not have guessed so many. Wise.

[dogger]

i'm a ''walker'' , never owned a wheelchair , but occasionally use crutches . C5/6 incomplete , 12 years post .

thank you
dogger

every day i wake up is a good one .

[beelady]

I have seen the results of the poll and have given my answer. I am wondering what my sons chances of walking are though, even with those percents. I have been afraid to get the answer from his Dr. at TIRR so pray everyday for him to move something. He broke C7 but has very good if not perfect arm movement but alot of weakness in his right hand. He has always had feeling in his entire body since the day of the accident but it isnt normal but still seems to improve, very slowly. He knows when he needs to cath and has pressure before he does his bowel program, His legs sweat (but at that time he was wearing tedhose) He has been injured 5 1/2 months. Do those signs point to a good chance of recovery or is this more typical and we still have to wait and see? Thanks I forgot to mention that he has abs and back muscles, at least according to the biofeedback he was hooked up to yet he is very weak. He can do "girl" pushups very well, practically to where he is sitting back on his legs....but not quite.

[This message was edited by beelady on 05-27-03 at 05:38 PM.]

[dogger]

Beelady , i am not going to try to answer your question about your son walking . what i will say , is that he is gaining recovery well beyond his injury level and can possibly expect this to continue , most likely in ''fits and starts ''. i still see small returns at 12 years post . i would suggest you try the chat room , there are a number of incomplete quads who lurk around there at times , and may be able to answer some of your questions .

thank you
dogger

every day i wake up is a good one .

[beelady]

Originally posted by dogger:

Beelady , i am not going to try to answer your question about your son walking . what i will say , is that he is gaining recovery well beyond his injury level and can possibly expect this to continue , most likely in ''fits and starts ''. i still see small returns at 12 years post . i would suggest you try the chat room , there are a number of incomplete quads who lurk around there at times , and may be able to answer some of your questions .

thank you
dogger

every day i wake up is a good one .What is fits and starts? That is one I have never heard of.

[SCI-Nurse]

There is some data on this from the Model Systems Centers. According to their most recently published book (that is now nearly 10 years old), from 1972-1992, with over 5,000 cases included:

For those admitted ASIA A, 88.8% remained ASIA A at discharge from rehab, 5.0% were ASIA B, 2.9% were ASIA C, 2.8% ASIA D, and 0% ASIA D.

Fot those admitted ASIA B, 4.9% were ASIA A at discharge (worse), 48.9% remained ASIA B, 15.6% were ASIA C, 27.6% were ASIA D, and 0.7% were ASIA E.

For those admitted ASIA C, 1.9% were ASIA A (worse), 0.8% were ASIA B (worse), 41.4% ASIA C, 53.3% ASIA C, and 1.3% ASIA E.

For those admitted ASIA D, 0.5% were ASIA A at discharge (worse), 0.5% were ASIA B (worse), 0.8% were ASIA C (worse), 90.3% were ASIA D, and 6.5% were ASIA E.

This does not specifically address ambulation, but most people who are ASIA Ds ambulate at least part time, although sometimes requiring assistance. We also know that that now days MOST people with SCI are incomplete at the time of admission to rehab (ASIA B-D).

(KLD)

[dogger]

Beelady , ''fits and starts '' = at intermittent times into the future , is probably the best i can think of offhand .i hope this expains , it must be an Aussie expression .

thank you
dogger

every day i wake up is a good one .

[november]

Beelady
Hi...I'm 20/f. December 25, 2002 I was in a roll-over which resulted in a c6/c7 incomplete sci. I saw your post, it was eerie, felt like I was reading about myself almost. I have almost normal arm movement. My main prob is I don't have full finger extension in my right fingers. I also have sensation since the beginning and motor return to t-12 maybe L-1. No leg movement yet http://sci.rutgers.edu/forum/images/smilies/frown.gif...but I will!!! Anyways if you wanna talk let me know. Like I said, me and your son sound verrry similar....
Thanx
november

[SarahRN]

Wise (and all),

I surf this site alot but J, my paraplegic T5 complete ASIA - A buddy is too busy to come very often. If I could vote for him -- he is walking with RGO braces and walker - and he is now 4 years post injury.. learned to walk 3 months ago so it IS possible..

Presbynurse

[Wise Young]

Thanks, PresbyNurse.

There is also the question of what methylprednisolone does for people who are incomplete. According to the clinical trials, people who were incomplete at the time of admission and receive methylprednisolone within 8 hours recover approximately 75% of the motor function that they had lost. Most of the Model System Data were collected before the methylprednisolone was being routinely given to people with spinal cord injury. Wise.

[Kittyshrine]

I have an incomplete C5-C6 with central cord syndrome and Brown-Sequard syndromes. I also have a small cyst in my cord at approximately C-6 which was originally a hematoma. I was told I would walk but that it would take months. I walked in a month-and-a-half. In the past two years I did three short triathlons. Last year was a struggle and I eventually had to stop training. I developed feelings in my arms like I was being bitten by fire ants whenever I was in the sun on a hot day. I started having issues with overheating. In the end, whenever I would work out in heat I would end up very sick and in extreme pain from my face down. It is winter now and is a blessing. My neurologist has told me that everything I described was due to aging with my SCI. He let me know that my mobility would decrease over time. I don't know if he is right. No one in Austin seems to know what to do with me. It would be ironic if I ended up in a chair after walking for so long.

[Broknwing]

Kitty-
you need to see a new neurosurgeon ASAP! anytime you've got a
decrease in function that is NOT normal & is typically a sign of a syrinx. It sounds as if you've already been diagnosed with a syrinx but your dr is not treating it. I know there are others here more familiar w/TX and where you might want to go, but my firs guess would be to contact TIRR and see if they can recommend someone.

[darrel]

had a silent heart attack and fell off of a ladder and tried to see if I could touch my head to my butt. nope I can't.. I did learn that nose dives hurt less in water than on cement..
I had a lamenectomy of C3-C6 and ended up being C5/C6 incomplete and functioning at a C6 level. I walk about 200ft with the use of a quad cane. I have 70% return of left side and 30% return on right side I have drop foot and have use of thumbs, index fingers and middle fingers. 30lbs of grip with left hand and 10lbs grip in right hand. I started walking three weeks after my fall. I have other issues but that is for later.

[PeanutsLucy]

Call me stupid, but what is "gt" and "lt" ?

[In the wind]

C5-7 Incomplete but I don't walk. I think that if I could get qualified therapy, I would be a hellva lot closer to it

[Broknwing]

Call me stupid, but what is "gt" and "lt" ?

I believe there used to be symbols there...

gt= greater than
lt= less than

[PeanutsLucy]

Got it. Thanks.

In that case, my son is a walking para (L1 incomplete) but told his chances for recovery were not good. In fact, we were told he would face "severe mobility issues" for his entire life.

He started walking with KAFOs in the parallel bars about 6 weeks out. At 11 months, he's using forearm crutches and AFOs and can steadily walk about a half mile (he did a mile two weeks ago -- yippie!).

Though, he doesn't have much use of the muscles that control balance. Therefore, his abilities don't transfer well to places like to mall or mega-stores because most shoppers are too self-absorbed to even think there might be a disabled person in their path and I worry about him getting bumped and falling.

[vickylynn]

C6C7 WAS asia a now c but no leg movement just muscles firing . they told me at shephards they thought i would get a lot back wrong and i have tryed
but..... i am just sick and tired of feeling bad all the time. i usedto be so damn strong never sick but i am a wuss now

[AlexAgain]

Depends what is meant by "walking"
Walking in the physio gym but not functionally walking away from it.
I answered not walking.
I look forward to coming back in a few months to change my answer though.

[Wise Young]

I edited the poll.. It was a very old poll from 2003 and it was mistranslated. I edited it to place the correct ≤ and > symbols, as well as the question of the poll.

Alex, at the time of the poll, I left the definition of walking and "incomplete" to the person answering the poll. In retrospect, I probably should have emphasized the ASIA (American Spinal Injury Association) definition of "incomplete", i.e. presence of anal sensation and voluntary anal sphincter contraction. I probably should have emphasized walking by oneself without another person's assistance but using muscles of the legs with the use of canes, crutches, walkers, and braces.

Wise.

[soimumireland]

Son - Sean Age 6 2 years post on the 7th Feb. Not walking but working hard on standing without braces. Just finished 4 month programme Gait Training with the Kids Step Research project in the University of Florida.

[Buffie]

I am 11 mths post but not walking yet. I am c4/5 asia c, incomplete. I have a good amount of movement in my left leg and foot. Can only move little toe on right side, however I have a pt evaluation Feb 12 to determine if I am a good candidate for the neurorecovery network program at Shepherds to help me walk again.

[rhyang]

5.5 months post, asia D, injury below C4 (I believe that's how my rehab Dr. explained it). Walking unassisted (no gear). I was able to ditch my AFO, forearm crutches, and cane.

Well, I still keep the cane in the back seat of the car just in case ... left leg still fatigues easier.

[porchdog]

I went from total parlaysis to walking with a cane in approximately 9 months.
It was not easy and 5 1/2 years post it still isnt easy. I say total paralysis, I could move my arms but had to learn to use them. Could not push button to call for a nurse etc. All strength was gone. Makes me have more respect for a baby learning to walk. Definately hard work.

[Imight]

5.5 months post, asia D, injury below C4 (I believe that's how my rehab Dr. explained it). Walking unassisted (no gear). I was able to ditch my AFO, forearm crutches, and cane.

Well, I still keep the cane in the back seat of the car just in case ... left leg still fatigues easier.
you finally ditched the cane? congrats!!! :applaud:

you've recovered at the same pace as kevin everett, without NFL dollars, and facilities. jeez man, thats impressive!

[rhyang]

you finally ditched the cane? congrats!!! :applaud:

you've recovered at the same pace as kevin everett, without NFL dollars, and facilities. jeez man, thats impressive!

Thanks !! I actually haven't used the cane for about 6 weeks or so .. I did carry it around a lot though (as opposed to actually using it for walking). And anyway I've just had good luck ...

Keep up the good fight my friend - imo you should change your username to IWILL ;)

[smokymtn memories]

Cervical stenosis with myelopathy, C 4-5-6 and a blown disc at L 4 DDD, I'm eighteen months post surgery for my neck, posterier bone fusion.

I was unaware of any neck injury and it took almost two and a half years to get a diagnosis (no health insurance). I had lost quite a bit of function and was about ready for a full time wheel chair. I had been using a cane and still do. I was walking "better" probably a month after surgery.

I was'nt able to do PT or get any other kind of help because of the lack of insurance. I try to do what I can at home and know it's not enough. I still have issues with balance, my right side is worse than the left, B&B, and nasty burning and pain 24/7. I have had more of the burning and pain post surgery.

[Tiger Racing]

at the time of the poll, I left the definition of walking and "incomplete" to the person answering the poll. In retrospect, I probably should have emphasized the ASIA (American Spinal Injury Association) definition of "incomplete", i.e. presence of anal sensation and voluntary anal sphincter contraction.
I don't get those definitions. I never had a voluntary anal sphincter contraction, but I was able to stand and ambulate with a walker within months of my initial injury. I could even drive without hand controls and had quite a bit of sensation. Clearly I was "incomplete" so that ASIA scale just doesn't make sense to me.

C.

[SCI-Nurse]

Don't worry about the ASIA thing but it is helpfu for certain things and meant t be a quick way of describing someones functioning but since everyone is different it is what it is. Also used in research studies and to report advances etc..
Also you have to realize the ASIA can change.And should be done by someone who has been trained and is going to take the time to do it correctly.

You might have started out as an ASIA A r B but certainly aren't any more.

Also I have noticed I get pts that are ASIA C- I expect certain things from them and then I note in my eval they have very very weak movement and when I ask, they tell me they don't exercise the muscle(s) or use them any more -and they have weakened and just plain don't use them like they did in rehab and right after discharge (and these same people are not quite as independent in ADLs as they could be or once were and they admit just stopped doing this or that) .
So... the ASIA is a nice tool, can be hepful, but does not specifically describe everyone and it can change.

There is a term used in the ASIA- caled '"PP"- zone of partial preservation- those are the little areas where you can feel or maybe move a muscle move but it doesn't meet the criteria to change the ASIA score.

The scoring can be a litte complicated.

CWO

[mike]

I am a C5 incomplete and started walking about three weeks after my injury. My condition continued to improve for about two years and then stabilized at that level. About the time I stabilized re: muscle function I developed severe neuropathic pain which has continued to worsen up to now, eight years later. I exercise regularly, three to four times weekly using an eliptical workout machine, bicycle, and weight machines. I also do stretching exercises daily. I believe that my exercise regimen has helped maintain my condition.

[ima2003]

C5/6 incomplete walking with afo on left using a walker/crutches. i try to park my w/c and mostly walk throughout the day. still working on strengthening core muscles to maintain trunk control and balance. i'm 4 yrs post injury and a 55y/o fe. hopefully i can continue to make gains in spite of my age.:) i too have severe neuropathic pain....but like you mike i exercise and walk every day. it doesn't make the pain go away, but i figure i will have the pain with or without the exercise so why not move around as much as i can.

[SCI-Nurse]

I don't get those definitions. I never had a voluntary anal sphincter contraction, but I was able to stand and ambulate with a walker within months of my initial injury. I could even drive without hand controls and had quite a bit of sensation. Clearly I was "incomplete" so that ASIA scale just doesn't make sense to me.

You don't have to have voluntary anal sphincter contraction to be considered incomplete, but you do have to have anal sphincter SENSATION to be considered an ASIA B. I know a lot of people with ASIA B, C and D injuries (all incomplete) who don't have anal sphincter control.

ASIA D does mean that you have more than half your key muscles below the level of your injury which have a grade 3 or more voluntary muscle score, and you need a 3 or more for the muscle to be functional for use. It is this group that are often called "walking quads".

(KLD)

[Redskins5]

Fractured T5,T12, and burst L1 with a significant fracture to L2.

I am walking without any assistance with my date of injury being Oct. 12th 2007.

I had a fusion done randing from T11-L3.

[Riaan]

How do i know what asia am i? Is asia b good. I have sensation all over.dont sweat below my shoulders and no heat sensation below my shoulders. I can feel when my bladder is full although i leak sometimes.I have feeling in my anus.No movement in my hands. Left arm stronger than right. My hips feels like its getting stronger. Can move my legs with my hips in swiming pool,but not able to stand on it......

[Riaan]

What is my chances

[SCI-Nurse]

Ask your physiatrist if your ASIA category has changed. If you have weak movement below your level of injury you may now be an ASIA C. Generally though you would need to be an ASIA D in order to walk, since it generally requires that you have the majority of your key muscles below the level of your injury to have a motor score of 3 or better.

Meanwhile, you are still newly injured. Keep up the pool therapy, and get regular check-ups with your physiatrist so they can help to monitor the return you are getting.

(KLD)

[royandjoe]

3 years walking not ease bout i am still walking c7 t8 w/cyst t3t6 roy








[i wont give up]:nono:

[Imight]

it's not easy at all. and that alone makes it very difficult mentally.

what was once thoughtless, has become one of the most difficult things to do, and it SLOWLY gets better, but never easier. As soon as you master something like a braces, walker, crutches, etc, you have to move on to something harder.

Sometimes while walking in the morning to grab breakfast, I just feel like giving up and using my wheelchair. but that's the lazy way out and if I am capable of being upright, I feel thats how it should be.

Tought times. =(

[capecodsci]

I started walking about 8 months after injury -t12-L2 bust fractures- with kfo's and walker- I did rehab and worked very hard to move around --but I am in constant pain from my knees down and have alot of spasticity in my ankles/feet. I have a wheelchair and use it around the house -but it hurts like hell to sit for any length of time - I am always uncomfortable- My kids tell me I do the monster Mash when I walk - I am very slow-but i keep pushing ahead hoping one day for the cure for everyone with SCI

[joanne]

I am incomplete at C5 C6. I started to walk with a walker about week two after the injury. I was paralyzed for the first two weeks. I spent years in physical therapy. It will be 10 years this April. I went from a wheel chair, to a walker to a four prong to a cane and a brace.
I finally ditched the cane and the brace. I felt that if I depended on something to hold me up, then my body wouldn't get strong. It was true. I struggled for a while, but now you can't tell. I have drop foot and weakness on the right side. I lost most of my sensation on the left. The left burns constantly. It's been a long road with a lot of determination.

[momtocckc]

My husband was a C5/C6 in mid-January. He had his C5 replaced and C6 screwed back together. He is now fused from C4-C6. He has been walking unassisted for almost 1 month. He was paralyzed except his left leg at first (his left leg came back one day after his accident). His right leg began coming back about 1 1/2 weeks later, then his left hand another week or so later and then his right hand and tricep in the last couple of weeks. He's doing very, very well. His only real problem is strength at this point. He's a pretty typical Brown Sequard as far as feeling and movement have gone. He was an Asia B/C on arriving at the hospital and D on arriving at rehab two weeks later.

We've been very fortunate.

[Grammy73]

I am an incomplete C4-7. Walked away from an auto accident, suffered many wrong diagnosis. Almost a year later SCI is diagnosed.

Walking is limited to short distances as body becomes weak. Arms must be supported or breathing is painful. Right side tends to have more muscle spasms. Hands go numb all the time.

[mandorallen]

I am 30 weeks post injury, c6/c7 incomplete. I was told before my operation that i would never walk again. For my 1st 8 weeks post op i had no movement at all in my left leg but strengthing movement in my right from toes to hip. Since xmas more movement has returned in my left but not in the same sequence as my right, i can move the leg from the knee but have almost no control at the ankle and hip but the toes are getting better every week. i can stand and walk between paralell bars and with a walking frame but it looks messy as the left drags and spasms. i am on baclofen but i feel that i need a higher dose to combat the spasms. I fully intend to walk with as little aid as possible but i need to get more core strength. I also have H.O which is another factor in my fight back as it makes my pelvis and groin very tight which in turn seems to set off spasms when i am stretched out either horizontal or vertical.

[Wise Young]

I don't get those definitions. I never had a voluntary anal sphincter contraction, but I was able to stand and ambulate with a walker within months of my initial injury. I could even drive without hand controls and had quite a bit of sensation. Clearly I was "incomplete" so that ASIA scale just doesn't make sense to me.

C.

Tiger,

Even though your post was from a long time ago, it may be useful to answer your implied question, i.e. voluntary anal sphincter contraction is not a predictor of walking for you and therefore how does the ASIA scale make sense?

First, the ASIA scale does not say that people who are ASIA A (i.e. those without anal sensation and sphincters) cannot walk. Between 5-15% of people with ASIA A do recover walking. It just predicts that the probability of walking is lower. If you are classified as ASIA B during the first week after injury, your probably of walking is 30-25%. However, if you are classified as ASIA C, you have greater than 90% chance of recovering unassisted walking, according to several studies.

Second, people don't need their sacral S4/5 segments in order to walk. You can have a conus injury, for example, that damages all your sacral segments (S1-S5) and still be able to walk, albeit with weak ankles (that can be corrected with a AFO). Most people can walk if they have L2-L4. Walking requires hip flexors (that push the legs forward) and quadriceps (that lock the knees). You don't need voluntary control of these muscles as long as you have sufficient activation of the central pattern generator (CPG) that is located at about the L2 spinal cord.

Third, the ASIA classification system is not meant to be predictive when applied to chronic spinal cord injury. It was intended as a means of classifying spinal cord injury severity early after injury. Ample data indicate that people who are ASIA do not recover as well as those with ASIA B. Those with ASIA C recover better than ASIA B. And, of course, those with ASIA D recover better than ASIA C. This was the only purpose of the ASIA classification system.

The classification system should not be used to discourage people with ASIA A. As I pointed out, 5-15% of people who are ASIA will recover ability to walk unassisted. Also, the predictions do not apply to people who have been treated. In Kunming, for example, they have shown that people with ASIA A and who then get intradural decompression within a month after injury have 50% chance of recovering unassisted locomotion. This has yet to be accepted by doctors in the United States and we are planning clinical trials to show that this procedure works.

Wise.

[Khatsalano]

I am a C5 Burst Fracture survivor and I've been told I'm an anomaly. I had a C5 corpectomy, C4/C5 and C5/C6 diskectomy with fusion and titanium augmentation. Every injury is different and I know I am very fortunate.

I've written up all the details in my story, linked in my signature line below, but I am 9 months post and I have had a full recovery. I can work out, swim, run, surf ... I even went golfing this weekend with no pain and my swing is even more on-plane with my new titanium neck!

My MRIs show a bright white spot in the middle of my spinal cord and my neurosurgeon found that and my neuropathic pain (now gone) to be of great concern. I am told I was ASIA-B in the ICU. I remember I had sensation but only limited movement ... I couldn't move my right arm to sign the consent papers for surgery so I made a scribble with my left hand. I refused to accept my fate and gratefully, one week at a time, everything got better. I am off all meds now with almost the same range of motion. I can't hold my thin iPhone to my shoulder with my ear anymore. I can still play piano. It goes without saying, I am extremely thankful and I take my new chance at life to live every day to its fullest.

- K

[CarlBarnardo]

I am a C5 Burst Fracture survivor and I've been told I'm an anomaly. I had a C5 corpectomy, C4/C5 and C5/C6 diskectomy with fusion and titanium augmentation. Every injury is different and I know I am very fortunate.

I've written up all the details in my story, linked in my signature line below, but I am 9 months post and I have had a full recovery. I can work out, swim, run, surf ... I even went golfing this weekend with no pain and my swing is even more on-plane with my new titanium neck!

My MRIs show a bright white spot in the middle of my spinal cord and my neurosurgeon found that and my neuropathic pain (now gone) to be of great concern. I am told I was ASIA-B in the ICU. I remember I had sensation but only limited movement ... I couldn't move my right arm to sign the consent papers for surgery so I made a scribble with my left hand. I refused to accept my fate and gratefully, one week at a time, everything got better. I am off all meds now with almost the same range of motion. I can't hold my thin iPhone to my shoulder with my ear anymore. I can still play piano. It goes without saying, I am extremely thankful and I take my new chance at life to live every day to its fullest.

- K

You Lucky Bastardo - I would`nt worry too much about the IPhone - am green with envy regarding the golf - I`m still on crutches but am flying choppers again - stay frosty mate

[Khatsalano]

Carl,

No way? I'm a pilot too ... fixed wing though. :) Flying was one of my main goals too after my recovery. For me, it was mainly about building up confidence and getting off the stronger medications so I can rely on myself up there. I got some re-currency training with my CFI since it had been maybe 5 months without flying but after that, going up by myself was almost as amazing a feeling as the first solo back in PPL.

- K

[MarkB701]

Carl,

No way? I'm a pilot too ... fixed wing though. :) Flying was one of my main goals too after my recovery. For me, it was mainly about building up confidence and getting off the stronger medications so I can rely on myself up there. I got some re-currency training with my CFI since it had been maybe 5 months without flying but after that, going up by myself was almost as amazing a feeling as the first solo back in PPL.

- K


So did you come off baclofen, Dantrolene and oxybutlyn??? How do you manage any spasticity if applicable?

[sorefm]

Saw this thread and thought I'd add my bit. I'm 13 months post accident fractured t6,t12, burst L3. Classified as a "t9" at discharge from inpatient rehab almost a year ago.

Got out of inpatient rehab using a wheelchair and able to do almost 400 feet in a walker and was able to do stairs with a cane and a railing.

Progressed to forearm crutches, then a cane. Got rid of the cane about 6-8 weeks ago but I'm still slow (about 2/3 normal speed) and balance is worse than I would like due to weak left hip muscles.

Started riding my bicycle 6 weeks ago. Doing 15-20 mile rides (even did one 25 miler).Like my walking, only doing about 2/3 my old speeds and I am working my butt off to do it. I've got the HR monitor logs to prove it!

All sounds great but I am far from normal. Still have to cath, bowels are a constant challenge and I still wear protective undergarments to guard against the occasional accident. Sexual function is frustrating, not because I can't climax but because it happens so damn quickly. These last 2 items really get me down.

I too am a professional pilot and I harbor great hope of receiving medical qualification to return to work. Might take a while though.

FM

[porchdog]

We can never surrender. It is an ongoing battle to be mobile. Working out to keep what strength and movement we can with limited stamina. We have to stay on the upper side of the flower bed.

[mv740]

It seems like quads recover walking better than paras? how come dr. Wise. I always thought that the higher the injury the less chance of walking.?

[Brooke]

Hi there. I have Hereditary Spastic Paraplegia.

I can walk about 10-20 feet. That's as far as I can get without having to sit down and rest for an hour or two. I can also stand for about 20-30 seconds straight before having to sit.

However, most of the time I use a wheelchair.

---> Does this qualify me as a "walking para"?


---> Does "walking" para or quad mean that you can walk at all, very briefly, or does it mean you always walk around everywhere and don't use a chair most of the time?

[cajun]

I fractured C1/C2 5-1/2 months ago. I was on a ventilator for one month. I had pneumonia during part of my two week stay in ICU. During the first few days I had erratic heartbeat and blood pressure. I did not receive methylprednisone. My records show that I was ASIA C five days post accident. I was put in a standing position with a hoist to do squats during my time in ICU. I was walking without an assistive device at 2-1/2 months. I could walk a mile at four months. My sensation is everywhere, but not as good as pre-accident, with tingles or less sensitivity. My strength is better in my legs and right side. My weakest link is my left hand. I am walking, riding a trike, lifting weights, doing simple yoga/pilates, and stretching to improve my strength, coordination and stamina. My problems are spastic hypertonia, exercise induced hypotension, spasms and frequent nighttime urination. I went from 120mg to 60mg baclofen/day to improve drowziness and continence. My big worry is the spasticity.

[Kari in Pacific NW]

I have a C5 incomplete injury and I am two years post-injury. I never lost walking, but initially my hands and arms did not work. No one ever told me my ASIA score when I was hospitalized, but was later told that I am ASIA D. My hands have greatly improved, but my biceps and deltoids are not functioning.

[jody]

I was diagnosed with pelvic injuries, and broken ribs. Not recovering bladder and bowel control and the development of the stabbing burning broken glass pain led to a rectal exam, and then the caudal equina diagnoses. My left thumb was paralyzed completely but was diagnosed as a hand injury, and foot drop began to develop with a one sided weakness. That lead to an evoked potential and MRI. Two injuries and a birth defect were noted, the lower injury where swelling and cyst were visible supported the diagnosis of cauda equina syndrome. I get AD, and have hoffman's signs tough, that has been noted with every Nero exam since my accident. I have regained use of both hands but my thumb still looks retarded, and my ring fingers on both hands have involuntary movements, and stabbing needle like pain. I would say that I am a walking incomplete para with one good hand, and one kinda stupid one, but since I get AD, I have suspected I may actually be a walking quad.

[GL]

Hi Dr Wise Young and everyone
I am a incomplete quad actually 2 x I broke my neck

Dont laugh at my old antique splinters lol I like my old wooden crutches I had since I was 16

If the pain is manageable in my hips I will often try to utilize my crutches or a walker . I cant feel anything from my neck down .

I have a very lightweight custom wheelchair I use because my neck has been bothering me so much . But yes I do like crutches .
I give it my all
They told my whole family I would never recover and I am living proof that never say never ...
Anyway's this is hard for me to rethink so I will blink out of here

[JamesDewayne]

Hi Dr. Wise and everyone-
Just signed up and havent had much of a chance to explore the forum yet. Looks very informatative from what I have seen so far.

8-9 years ago after a MRI, I was admitted into the Hospital. Was told my results and my options. Surgery or paralized from injury down (T-3) really didnt have alot of of time to consider my options the next day left leg went paralized and i put my faith in some awesome doctors.

The short story, disk was removed through the chest. Then bone graph on vert. A week later outta intensive care, and wiggling toes. Two weeks later fused with rods in back from T2-T5 to stabilize everything, plus another bone graph. Two Months and 10 days walked out of the hospital with use of a cane.

I still have numbness in right arm, and some very managable pain(without meds) weather and certain activities leave me aching. But for the most part I am able to do what I like:) if you dont see the scars you would never know I had surgery! I was very lucky.

Looking foward to exploring the forums. Take Care-James

[Bonnette]

Hi James, and welcome to the forum. It sounds like you have had excellent doctors, and it's wonderful that you've had such good surgical results. Best wishes to you.

[darrel]

hey wise, I have not read the thread but I did see the title and it caught my eye. I am a walking quad at level c5/c6 incompleat I can walk about 200ft bfore I need my chair that I finally fought medicare for after 4 1/2 years. I have a baclofen pump set at 660 mics/ day and am on tezatdine 8mg/every 6 hrs. I try to live a regular life now as far as I can but it is rough. If you get in to my past posts you will see that I had a heart attack and fell from a ladder and recieved my spinal injury. so I am on multiple meds to keep me the way I live now. If it was not for this sight I would have lost it 3 years ago. you guys have taught me alot and I appritiate it emencly. thank you all

[marycsm77]

hey wise, I have not read the thread but I did see the title and it caught my eye. I am a walking quad at level c5/c6 incompleat I can walk about 200ft bfore I need my chair that I finally fought medicare for after 4 1/2 years. I have a baclofen pump set at 660 mics/ day and am on tezatdine 8mg/every 6 hrs. I try to live a regular life now as far as I can but it is rough. If you get in to my past posts you will see that I had a heart attack and fell from a ladder and recieved my spinal injury. so I am on multiple meds to keep me the way I live now. If it was not for this sight I would have lost it 3 years ago. you guys have taught me alot and I appritiate it emencly. thank you all

You had to fight Medicare for 4 1/2 years to get a w/c? jesus.

[darrel]

yes, I was a fool and bought my first out of pocket not knowing any better, then when I was evaluated for the first they thought they could get me the best there was as far as mediciad would pay for. The day they delivered was the day medicare took over and screwed me. It took me till now to get my new one that I got three weeks ago, it might be a invacare patriot but at least it is one that fits me and is new.

[james18]

i am c-3 incomplete and about 2 years post injury. my arms hardly work at and i cant my feel my legs. fortunately my legs work great, and im still trying to learn how to walk. i am progressing all the time but i am having difficulties with feeling and balancing.

[darrel]

i am c-3 incomplete and about 2 years post injury. my arms hardly work at and i cant my feel my legs. fortunately my legs work great, and im still trying to learn how to walk. i am progressing all the time but i am having difficulties with feeling and balancing.

hey that is great! I have 20% return on right side and 70 on left. I have a drop foot and have to wear an afo and getting checked out for a kfo. it takes time and alot of work but if you can walk 10 ft... then you can walk 15! I started out having to be taught how to move each foot while on the parrellell bars they tryed to do my training on a tread mill with some type of harness that cut in tome too hard and I could not do it. I graduated to a walker then a quad cane. never give up hope!

[darrel]

by the way I fall all the time but I just get back up and go some more. when I first got out I refused the help to get up. I fell down,by god I would get back up... a friend of mine watched me with this attitude for about 2 years and finally watched me get back up after tring for about an hour...S.O.B. pushed me back down then asked if I wanted help up?. I finally accepted it. pride is a hard thing to break, but if there is some one out there who will help you, and not hold it against you you have a friend for life.

[Joel]

Im a C5-6 incomplete. Injury 11/1980. Have quadrapareses (sp?) Over the past few years have been losing ability to walk. Started using a cane, then walker, now use wheelchair/scooter for anything over 300 yards.

Diagnosed with post-tramatic syringomylia 10 years ago 2 surgeries to correct (1997,1999). Now told that regression probably from aging nerves/nerve drop off.

Anyone have similar issues with losing motor function many years post injury?

[Wise Young]

Hi there. I have Hereditary Spastic Paraplegia.

I can walk about 10-20 feet. That's as far as I can get without having to sit down and rest for an hour or two. I can also stand for about 20-30 seconds straight before having to sit.

However, most of the time I use a wheelchair.

---> Does this qualify me as a "walking para"?


---> Does "walking" para or quad mean that you can walk at all, very briefly, or does it mean you always walk around everywhere and don't use a chair most of the time?

Brooke,

The term "walking para" was originally coined to describe a spinal-injured person who started out paralyzed in the lower limbs and recovered sufficiently to walk. There are "walking quads" as well, i.e. people who were quadriplegic and who have recovered walking. I guess one can also use the term "walking tetra".

The degree of walking necessary to be called a "walking para" has not been defined. This is an informal word that is used by the spinal cord injury community and not necessarily the medical community. Walking paras and quads are not terms that you will find in the published medical literature describing spinal cord injury outcomes.

In fact, until fairly recently, most medical doctors did not believe in the concept of recovery after spinal cord injury and therefore the concept of a walking quad or para would be inimical to the traditional view of spinal cord injury. I believe that more people are not walking after incomplete spinal cord injury in part because they were not encouraged to do so.

In your case, I don't think that the term would apply. However, from your description, it seems that your walking would qualify as unassisted locomotion.

Wise.

[Wise Young]

Im a C5-6 incomplete. Injury 11/1980. Have quadrapareses (sp?) Over the past few years have been losing ability to walk. Started using a cane, then walker, now use wheelchair/scooter for anything over 300 yards.

Diagnosed with post-tramatic syringomylia 10 years ago 2 surgeries to correct (1997,1999). Now told that regression probably from aging nerves/nerve drop off.

Anyone have similar issues with losing motor function many years post injury?

Joel,

Quadriparesis is the word http://dictionary.reference.com/browse/quadriparesis. Many people do lose their ability to walk over time. The cause is not clear but may be related to a similar loss of function that occurs in people after polio, called post-polio syndrome. There needs to be a lot more studies of this phenomenon.

Wise.

[Wise Young]

by the way I fall all the time but I just get back up and go some more. when I first got out I refused the help to get up. I fell down,by god I would get back up... a friend of mine watched me with this attitude for about 2 years and finally watched me get back up after tring for about an hour...S.O.B. pushed me back down then asked if I wanted help up?. I finally accepted it. pride is a hard thing to break, but if there is some one out there who will help you, and not hold it against you you have a friend for life.

Darrel, thanks for all your posts. Wise.

[Wise Young]

I want to comment on the results of this poll.

First, I want to thank everybody who answered on this poll. Over 150 answered the poll and the results are very interesting.

Second, the statistics are similar for people who are within a year after injury versus those who are more than a year after injury. For people who are more than a year after injury 50 are walking and versus 34 who are not. If we add the two, i.e. 84, and express the percentage of walkers, 60% of people are walking and 40% are not. The statistics for people within a year after injury were similar, i.e. 59%.

Third, this percentage walking is lower than the 90% walking reported by Bruce Dobkin in his study of the effects of treadmill versus overground walking at one year in people with incomplete spinal cord injury. This discrepancy may be due to differences in interpretation of what incomplete is and what walking is.

Wise.

[Wise Young]

i am c-3 incomplete and about 2 years post injury. my arms hardly work at and i cant my feel my legs. fortunately my legs work great, and im still trying to learn how to walk. i am progressing all the time but i am having difficulties with feeling and balancing.

james18,

You are what would be called a "central cord syndrome". Most people with this syndrome walk and you should recover more arm function.

Wise.

[Joel]

Joel,

Quadriparesis is the word http://dictionary.reference.com/browse/quadriparesis. Many people do lose their ability to walk over time. The cause is not clear but may be related to a similar loss of function that occurs in people after polio, called post-polio syndrome. There needs to be a lot more studies of this phenomenon.

Wise.

What about post tramatic syringomylia. I don't see it mentioned much here?

[kelrod]

T-7/8 incomplete, 5 years post. Initial 6 weeks of inpateint inpatient therapy included:
PT & OT. One week prior to discharge, began walking within parallel bars with KAFO's.
Over a 14 month period outpatient PT: Wheel Chair 180 days, (Harnessed Treadmill)
Walker (1 KAFO- 1 AFO) 90 days, Two canes (1 AFO) 30 days,
Quad Base Cane (1 AFO) 90 days, Single Base Cane (Bioness L-300) current.

[cheesecake]

Originally Posted by Wise Young
Joel,

Quadriparesis is the word (Source). Many people do lose their ability to walk over time. The cause is not clear but may be related to a similar loss of function that occurs in people after polio, called post-polio syndrome. There needs to be a lot more studies of this phenomenon.

Wise.

I fit this definition and after 20 yrs my ability to walk is severely diminished--I am awaiting my chair.

[cheesecake]

Originally Posted by Wise Young
Joel,

Quadriparesis is the word (Source). Many people do lose their ability to walk over time. The cause is not clear but may be related to a similar loss of function that occurs in people after polio, called post-polio syndrome. There needs to be a lot more studies of this phenomenon.

Wise.

I fit this definition--at 20 yrs post injury I am returning to a chair. My shots and muscular structure is shot. It was a good 17 yrs walking though I don't know if I would do it differently. Medicine has really improved.


i'm a ''walker'' , never owned a wheelchair , but occasionally use crutches . C5/6 incomplete , 12 years post .

thank you
dogger

every day i wake up is a good one .

Two years after this post Dogger began using a chair. By 2006, he used it almost exclusively.

[Joel]

For those walking quads who are losing there mobility, what has the Dr given as to why?

When did the regression start (how many years walking and then at what point did mobility start getting harder and how long after that did a wheel chair become nessecery?)

[betheny]

For me, Graves disease 5 yrs post pretty well put paid to my grueling, slow, painful and impractical plan of seeing the world from my fully locked upright position. Life was passing me by. The ability to stand, in itself, is a huge gift.

c5-6 6 inc 2000

[Millard]

For those walking quads who are losing there mobility, what has the Dr given as to why?

When did the regression start (how many years walking and then at what point did mobility start getting harder and how long after that did a wheel chair become nessecery?)

Hi Joel,

I was walking for 37 years after my injury. I fell and broke my left tibia and fibula, two years later I broke my right foot (twice) and in 2004 (age 57) I fell and broke my left kneecap. My OS told me I had lost much bone density that I could possibly fall and break something that would not heal and I'd spend the rest of my life in bed. I opted for the power chair and it has been great...I wish I had done this years ago.

If you have questions, I'll be glad to answer them.

Good luck.

[woman from Europe]

I was walking for 34 years, but the last years before that I lost more and more function. I was going to the neurologist after two years and they never found out why except I was overused. They could see that on the EMG. The graph was so big they had to make the pic on the screen smaller, 12 times bigger than normal.

In the end it was nearly impossible to walk and I had both neuro pain and pain from overuse, so I got my first chair in 2004, half a year after I startet to write here. I wrote Wise and he explained me about SCI and aging. Nothing to do with it and only a little exercise. I was still going four weeks to rehab and really worked out every day and two weeks after I came home I could not walk anymore.

But I am a para and I can stand up. Not as good as Betheny, but very useful still especially with transfers. My feet are nearly normal, but I have nearly nothing from under the knees and up. But I got paralyzed in two hours and it started from feets and went up and stopped under the navel.

[keeping on]

lady from Europe; wouldn't it be nice if therapies are realized that reconnect nerveways or allow improvement in current pathways? It's diificult to see where any therpies will help us. I do belive that therpies will be avaible for those to come. I still hold out hope that somethign might come for us, but it is diffcult. Good luck to you and all who suffer.

keeping on

[Joel]

[QUOTE=Millard;1317192]Hi Joel,

I was walking for 37 years after my injury. I fell and broke my left tibia and fibula, two years later I broke my right foot (twice) and in 2004 (age 57) I fell and broke my left kneecap. My OS told me I had lost much bone density that I could possibly fall and break something that would not heal and I'd spend the rest of my life in bed. I opted for the power chair and it has been great...I wish I had done this years ago.

If you have questions, I'll be glad to answer them.

Good luck.[/QUOTE

Millard

So it wasn't a neuro problem that prevented you from walking, more of a preservation of your skelatal system?

I go for a cervical and lumbar MRI as well as a CAT scan this Weds to see if there is something going on in those areas that may be causing my decline.

[Patty41]

I'm a walking quad who's two years post. Started walking three/four months post. Walk mainly on flat surfaces, but need one person or walker assist on uneven surface. Struggle with high tone and spasticity, which inhibits a full ROM. Also, have problems correctly transferring weight through the right hip flexor, which hinders my gait. :banghead:

[woman from Europe]

lady from Europe; wouldn't it be nice if therapies are realized that reconnect nerveways or allow improvement in current pathways? It's diificult to see where any therpies will help us. I do belive that therpies will be avaible for those to come. I still hold out hope that somethign might come for us, but it is diffcult. Good luck to you and all who suffer.

keeping on

That would be nice. The bad thing is I am so close to walking, but after walking with a SCI for so many years I am really tired. And the last years before the chair was terrible. I was even looking at the door to the bathroom and dread getting up and walk out there. So I have it better now but sometimes I wish I could take a few steps at least :)

[mstephan]

c2c3 incomplete, nothing for about 3 months started to move toes than legs. no balance but semi walked out of RIC 5 months post injury. use 2 canes very slowly, can do stairs with someone on guard. hands, arms, shoulders still tough, but still making gains 3 1/2 years post. work at it everyday

[Patty41]

That would be nice. The bad thing is I am so close to walking, but after walking with a SCI for so many years I am really tired. And the last years before the chair was terrible. I was even looking at the door to the bathroom and dread getting up and walk out there. So I have it better now but sometimes I wish I could take a few steps at least :)

Sadly, I hear your story time and time again from individuals who have aged with SCI's. I'm sorry you've had to suffer both the physical and psychological loss of once again not being to walk. Unfortunately, unless research and medicine develops better treatments, more likely then not, it's going to be the fate of most of us walking quads and paras. But, the fact you have been so forthright about your experience, does take some of the scary out it in knowing what might be expected. For now, I'll be grateful for the ability I have to walk any at all.

[woman from Europe]

When I started to write here on CC, I had never known anybody aging with SCI and my doctors did not believe me. They thought I had MS, but I didn't. Even the neurologist didn't know about SCI and aging and nobody understood why I was loosing function. That was the real nightmare because I did not understand why and it wasn't exactly my most happy moment either ;) Slowly getting paralyzed again... But I am greatful for all the years I was walking and all the fun I had and all the crazy things I have done :D

[gvinton]

Very scary to hear these stories...

[Kalme001]

I just have a question i'm hoping people can answer. My brother says he cant move his legs and fingers becauase it hurts too much when he tries. Does it ever hurt anyone else when they try to move? He is a C5 quad 8 months post.

[SaraBeara91]

I am a walker. I had an epidural abcess caused by trauma t4-t9 incomplete. I spent a little over a week in the regular hospital after surgery and then I was transferred to an inpatient rehab facility. There, within 2 weeks i was able to somewhat stand up on my own (of course i had to wear ankle braces and knee cages because they all buckled) i also had to look at my feet because i couldn't really feel where they were going...but i had the strength to move them.
I was in that place for 4 weeks and when i left...i walked out of there with crutches. No one could really explain why or how my function came back like it did. One day, my knee is hyperextending with every faulty step i take and the next day...it hardly gives at all.

now, 5 months post op. I still use the crutches but i am beginning to rely on them less and less. I can walk without them as long as i have a counter or something to steady myself on. Sensation hasn't changed much, but the pain in my legs is getting worse.. (i'm hoping thats a good thing? meaning my feeling is starting to come back). I have really witnessed a miracle in my recovery and my neurosurgeon says that I am way ahead of schedule and he is hopeful that i will make a complete and full recovery!

[lonecoaster]

i'm 45, 8 months post-op c-4/c-5 s1 cauda equina. worked and played hard. i can walk without a cane, my gait is poor, better with a cane or walking sticks. have weak hip (flexers) both sides. still have saddle numbness, fabby from my bum down the backsides of both legs. have (spasticisity?) cant spell.. in my right leg from my injury site to my toes on the right leg, my toes have curled to where i walk on my toenails. not alot firing in the left side of left leg. i walk mostly on my heels and the outside edges of my feet. no planter flexion. i do house hold chores, do exercises daily at home and go to the Y once a week to swim. i notice latley my left hip tightens, kinda like a kink. i can stretch it some and get some relief, but it aches as well as my right knee and ankle. the doc wants me fitted for some leg braces soon and i'm working on the toe curl.
you have talked about preservation here. one friend recommended i start using a wheelchair part time, how do approach this with the doctor if they havent recommeded a chair. makes me feel like i'm being a wuss.

[Joel]

I am a walker. I had an epidural abcess caused by trauma t4-t9 incomplete. I spent a little over a week in the regular hospital after surgery and then I was transferred to an inpatient rehab facility. There, within 2 weeks i was able to somewhat stand up on my own (of course i had to wear ankle braces and knee cages because they all buckled) i also had to look at my feet because i couldn't really feel where they were going...but i had the strength to move them.
I was in that place for 4 weeks and when i left...i walked out of there with crutches. No one could really explain why or how my function came back like it did. One day, my knee is hyperextending with every faulty step i take and the next day...it hardly gives at all.

now, 5 months post op. I still use the crutches but i am beginning to rely on them less and less. I can walk without them as long as i have a counter or something to steady myself on. Sensation hasn't changed much, but the pain in my legs is getting worse.. (i'm hoping thats a good thing? meaning my feeling is starting to come back). I have really witnessed a miracle in my recovery and my neurosurgeon says that I am way ahead of schedule and he is hopeful that i will make a complete and full recovery!

I think you are doing great being 5 months post op. In my case I kept getting return and stronger over a 2 year period. I had to use knee cages, leg braces at first also. Actually get stronger over maybe a 3-4 year peroid -- it takes time. Now 30 year post op iot is slowly going -- aging with a SCI they say. Not everyone is the sme though.

[Joel]

i'm 45, 8 months post-op c-4/c-5 s1 cauda equina. worked and played hard. i can walk without a cane, my gait is poor, better with a cane or walking sticks. have weak hip (flexers) both sides. still have saddle numbness, fabby from my bum down the backsides of both legs. have (spasticisity?) cant spell.. in my right leg from my injury site to my toes on the right leg, my toes have curled to where i walk on my toenails. not alot firing in the left side of left leg. i walk mostly on my heels and the outside edges of my feet. no planter flexion. i do house hold chores, do exercises daily at home and go to the Y once a week to swim. i notice latley my left hip tightens, kinda like a kink. i can stretch it some and get some relief, but it aches as well as my right knee and ankle. the doc wants me fitted for some leg braces soon and i'm working on the toe curl.
you have talked about preservation here. one friend recommended i start using a wheelchair part time, how do approach this with the doctor if they havent recommeded a chair. makes me feel like i'm being a wuss.

I would talk to your DR. Insurance may not pay for a wheelchair if they feel (the DR) says you won't need one. Of course that may be good news if the DR says that. If you feel you need one now to manage I would tell the DR that also.

[cajun]

I fractured C1/C2 5-1/2 months ago. I was on a ventilator for one month. I had pneumonia during part of my two week stay in ICU. During the first few days I had erratic heartbeat and blood pressure. I did not receive methylprednisone. My records show that I was ASIA C five days post accident. I was put in a standing position with a hoist to do squats during my time in ICU. I was walking without an assistive device at 2-1/2 months. I could walk a mile at four months. My sensation is everywhere, but not as good as pre-accident, with tingles or less sensitivity. My strength is better in my legs and right side. My weakest link is my left hand. I am walking, riding a trike, lifting weights, doing simple yoga/pilates, and stretching to improve my strength, coordination and stamina. My problems are spastic hypertonia, exercise induced hypotension, spasms and frequent nighttime urination. I went from 120mg to 60mg baclofen/day to improve drowziness and continence. My big worry is the spasticity.

I have continued to make progress with strength and stamina. My weight lifting is at about 70% of pre sci. I can walk 5 miles. I can ride a bike 20 miles, at 12 mph average. The spasticity is a little better.

[keeping on]

Cajun, it sounds like you're kicking ass. We all would like to walk and bike again. I use my Nu-Step recumbent stepper 2/hrs /day. I can't walk but try. My quads have come back but my lower legs. though have partial feeling, no stregnth. anyway, myu rehab is trying to get me approval for partial payment of the Easy Stand Glider.

keeping on

[trekker6]

I'm an incomplete quad. stenosis at c-4, fell on my head skiing at mount batchelor 1/1/11 went t0 st charles medical center with nothing below the neck, 2 weeks in icu, a month of rehab, back home in florida now, walking with a walker, movement in fingers, some hand strength, hands tingling, spasticity is overwhelming, but work out at the gym as much as I can stand. I'm 59 years old with central cord syndrome and want it all back.
Linsey

[charmed1199]

C4-5 injury here and am a walking quad. I am 57 years old and had my injury in 2009. It has been a rough road but trying to cope.

[Jett]

C5 injury in 1977 and walking with forearm crutches since. Nothing below the deltoids works 100% but, everything works to some degree.
I enjoy skiing, hand cycling (on and off road) and swimming. A WC is handy in in big malls or big distances.
At age 50 reading some of these posts describing regressing back into a chair is not very comforting!
...........USE IT OR LOSE IT................

[russelljr2]

I am a walking quad c3-4 I started 2 month after injury july,25 2010
Im working on my hands which have full range but all thumbs im always droping things and my writing is like a 1st grader and relearning everything is tough work .

[russelljr2]

I am a 50 year old c3-4 central cord syndrom its been 9 months my hands took the longest to come back just in the last month im now able to manipulate things in my hands and able to play guitar not like befor but good im thinking about restringing my 12 string next

[truly]

I have an L1 and L5 incomplete injury due to a tangle with a tornado. L1 was repaired and L5 is in a cage. I also had other injuries that kept me in a wheelchair for the first 4.5 months. However, at 9 months post, I'm walking very well with two canes and fairly well with one cane. Today I went on a hiking trail, even. I walk in the PT gym without any aids but am not comfortable with it yet.

[lonecoaster]

Thats hardcore truly, your doing AWESOME!

[truly]

That's a good question about the chair. I put mine away about three months ago and haven't considered using it. However, I notice that other walking quads/paras seem to use one at least a portion of the time. I'm wondering if it's better to stay on my feet and continue to work towards strengthening or to use a wheelchair when distances and fatigue are too much. Really, really don't wanna do the chair thing again.

[slgiblin]

I am a C4 Incomplete, ASIA D. Date of Sliding Door (date of injury) 9/20/2010. I had stenosis in the cervical levels that did not help my injury. At time of injury told it was complete and would never be out of bed again. First toe movement at 8 weeks post. Moved to ASIA D at 14 weeks when I left RIC. I walked, in the toughest sense, with a platform walker for 20 feet max. Used a power chair till 5 months post then moved to a walker then to a rollator. I walk with no assistance, just close guard, in therapy. Between rehab, gym, and personal trainer I put 30 plus hours in a week.

Hands and triceps a major challenge. Hip flexors, abductors, and adductors also a issues. Sensation seems like it is in progress but that may be wishful thinking.

[soukeynas]

My hubby was injured 2/17/2011 and he is walking with a walker that has wheels but still uses chair. Well that changed on 8/8/2011. Typical Monday. I was rushing to work and I had no idea that chair was in my trunk. WHen I got home he was grinning. WHen his ride came to go to therapy he used walker to get to van and then walked from front door to to his therapy. They gave him a standing ovation. Although he was walking with walker in therapy he alway came in his wheel chair. Even his therapist didnt think he had the endurance to walk that far. That night we had already planned to go to dinner with PT he had at inpatient. Lst time she worked with him they relied on gatebelts so she cried when she saw him in walker.
He's thankful for his progress but still has a little foot drop on right foot. Right hand he can make a tight fist and pointer/thumb can grasp but cant open it all the way by itself (if that makes sense). I guess they have stemmed his hand and foot as much as they can so now its just a matter of exercising and waiting on more return.

[kate]

My hubby was injured 2/17/2011 and he is walking with a walker that has wheels but still uses chair. Well that changed on 8/8/2011. Typical Monday. I was rushing to work and I had no idea that chair was in my trunk. WHen I got home he was grinning. WHen his ride came to go to therapy he used walker to get to van and then walked from front door to to his therapy. They gave him a standing ovation. Although he was walking with walker in therapy he alway came in his wheel chair. Even his therapist didnt think he had the endurance to walk that far. That night we had already planned to go to dinner with PT he had at inpatient. Lst time she worked with him they relied on gatebelts so she cried when she saw him in walker.
He's thankful for his progress but still has a little foot drop on right foot. Right hand he can make a tight fist and pointer/thumb can grasp but cant open it all the way by itself (if that makes sense). I guess they have stemmed his hand and foot as much as they can so now its just a matter of exercising and waiting on more return.

This sounds like Brown Sequard syndrome. Be grateful! My husband broke C-6 10 years ago and very, very slowly got back the use of his left side motor skills. His right foot still drops (he wears a titanium brace), and his right hand needs regular injections of botox to keep it from turning to a tight claw. He's been mostly healthy . . . okay, not compared to an uninjured man of his age, but compared to other people with sci, he's doing well. He learned to walk with a cane in a clinical trial at the University of Florida Gainesville, but his diagnosis was the wheelchair, and he lived out of that chair for 18 months.

Brown Sequard means that the injury to his cord is on one half (right or left) instead of top or bottom, middle or outside, some kind of mix. This kind of injury very often leads to better recovery of function . . . they think that somehow the left/right kind of injury allows neuron growth across the injury site that other configurations prevent.

If any of you have more motor function on one side combined with better sensory function on the other, you might have some variant of this condition. It's good news.

[mjgoldste]

Hello hello!

Thank you all so much for the posts on this thread and others. I can't believe the wealth of information here--and thank you especially to Dr. Young for having spent the time and energy organizing this forum.

I'm writing on behalf of my father, who has a C6 spinal cord injury as a result of a cycling accident on September 11th of last year. It has now been five months to the day since the accident and his improvement has been interesting to follow and yesterday, he revealed what seems to be a big step forward.

Condition In the aftermath of the injury, my father was in an ICU for ten days in downtown Philadelphia and was then in a rehab hospital (Moss) in the suburbs for three months. He had a surgical procedure done in which his C5 and C7 vertebrae were fused after the disc at C6 was removed. He was released from the rehab hospital in mid-December of 2011 and has been living at home since then. He is paralyzed from the chest down but still has very good shoulder and arm control. Very little control fine motor skills in his fingers though that seems to be returning with time, energy, and patience. No rectal or bladder control though he does spontaneously void. Uses baclofen for spasticity.

Recent Changes Last night, February 10th, my father revealed that he can wiggle his big toes on each foot, the left a little easier than the right. I was literally stunned and have a video of it to document progress over time. He can extend and flex the toe and, with some assistance, can even somewhat move his left foot as well. My father, who is not given to excitement, hid this development from us for a week because he didn't want it to be a fluke or just some random occurrence.

I found this forum as a result of searching around for people who have recovered (even moderately) from such injuries. My dad said a while back that recovery would start with him literally wiggling his toes and slowly gaining more function as time goes on. Is that the case?

Patient History My father is a physician--a nephrologist--by trade and a very physically active person. He rehabs literally four to six hours each day using a combination of weights, bands, and tools for both occupational and physical rehabilitation. He also stretches with an aide. He is very diligent in his work and we are fortunate to have close ties to the hospitals, doctors, and therapists in the area.

Could anyone comment on the possible expectations of a 60-year-old physician in good health recovering hereafter? He is 5 months removed from the injury and is very able to get around using a manual wheelchair. His hope--I believe--is to be able to live independently hereafter, though I think he believes he will be using a wheelchair from now on.

Thank you very much!

[slgiblin]

Walk Quad Endurance
I was injured C4/5 sept 2010. Complete at first then 2 months post some movement. Fast forward today using forearm crutches. Hands and tri troublesome, tone in biceps , pain in shoulders and upper legs. Find it difficult to walk more than 2 blocks or stay on legs more than 45 min. I just stared a lokomat study, do OT and PT 3x week and use a personal trainer 1 day. I do not take baclophine or pain meds, I grind through it cold turkey.

For walking quads out there, how has your endurance progresses? Has anything worked?

[aussiedawn]

I am an incomplete C6/7, 2 years post. I had a fall at home, 2 metres onto concrete. I wasn’t considered serious enough a case to be transferred to a specialist spinal unit so was treated in a regional hospital. I was 3 months there, first 6 weeks in the orthopaedic unit unable to move much and needed to be hoisted in and out of bed. After 6 weeks when I started to regain some movement I was transferred to the rehab unit and was given the use of a motorised chair. With the intensive exercise program in the unit I gradually was able to transfer independently into the chair, stand and then start walking very slowly with a 4-wheel walker. I left hospital on the walker and for about a month afterwards used a wheelchair for outings.
I then began using a walking stick and 6 months post was walking short distances, but tired quickly. Since then I have done hydrotherapy/aquarobics classes, balance & strength classes, used an exercise bike, a mini trampoline (aided) and most recently am practising riding a bicycle with trainer wheels (stabilisers) attached. I walk independently around the house but use 1 or 2 sticks when I go out. I feel my endurance and strength have improved but walking quality not so much.
I believe that the generalist medical and physio help I have received has been good. I am keen to get as much recovery as I can using the latest techniques/technology but have never been referred to a spinal injury specialist or neurologist. Should I be considering being reviewed by same in case some rehab aspects have been overlooked or would I end up chasing unrealistic expectations?

[swh2007]

I am an incomplete C6/7, 2 years post. I had a fall at home, 2 metres onto concrete. I wasn’t considered serious enough a case to be transferred to a specialist spinal unit so was treated in a regional hospital. I was 3 months there, first 6 weeks in the orthopaedic unit unable to move much and needed to be hoisted in and out of bed. After 6 weeks when I started to regain some movement I was transferred to the rehab unit and was given the use of a motorised chair. With the intensive exercise program in the unit I gradually was able to transfer independently into the chair, stand and then start walking very slowly with a 4-wheel walker. I left hospital on the walker and for about a month afterwards used a wheelchair for outings.
I then began using a walking stick and 6 months post was walking short distances, but tired quickly. Since then I have done hydrotherapy/aquarobics classes, balance & strength classes, used an exercise bike, a mini trampoline (aided) and most recently am practising riding a bicycle with trainer wheels (stabilisers) attached. I walk independently around the house but use 1 or 2 sticks when I go out. I feel my endurance and strength have improved but walking quality not so much.
I believe that the generalist medical and physio help I have received has been good. I am keen to get as much recovery as I can using the latest techniques/technology but have never been referred to a spinal injury specialist or neurologist. Should I be considering being reviewed by same in case some rehab aspects have been overlooked or would I end up chasing unrealistic expectations?

Yes, you should. Otherwise, how will you know that you have done everything reasonably possible to maximize and sustain your recovery?

[aussiedawn]

Yes, you should. Otherwise, how will you know that you have done everything reasonably possible to maximize and sustain your recovery?

I guess that's how I'm thinking but it surprises me that it hasn't been suggested to me by any of the health professionals I've seen. Maybe it's because travel (minimum 1600 kilometers) and expense will be involved. I find it's a fine line between getting on with other parts of my life and doing everything I can to get to gain maximum mobility. Many thanks for your reply.

[Johnny Kane]

I shattered my c 5 and had it fused with 4 and 5, I have the functionality of a c 7. I'm 10 months post injury and still have no voluntary leg movement.

[Charlottes Web]

MVA, 2008. Walked away not knowing I had a small tear, T2-T3, with an Arachnoid Cyst. My symptoms were, mild weakness and numbness in legs, bladder and bowel deficiency, and mild spasticity. In the meantime, my symptoms have declined. In 2010, I was ordered a cane, walker, and wheelchair. I now suffer with chronic/painful weakness and numbness from the chest down, with severe spasticity. The Arachnoid Cyst (I named, Charlotte), now occupies T2 - T8. I have a follow-up MRI every 6 months.

[Loblolly]

I sustained a crush injury in 1992. I had a complete dislocation of my spine between L1-L2 with an L2 burst, and my L3 and 4 were damaged as well. The damage to my spinal cord was significant. and was classified as a complete--but that was changed several weeks in to my recovery-- I was in a drug induced coma for several weeks on a vent. My recovery was 18 months long- first in a wheel chair, then a walker with braces and then canes with braces, a cane to nothing.

So, I am an incompletely para- who walks. I have some paralysis in my right leg and cannot feel the ground with my left foot..I stumble and fall sometimes. I believe I was incredibly Blessed by God with the Doctors that cared for me.

My daughter helped me "learn" to "run" again- and she and I ran a half marathon in November 2011- to celebrate the coming of my 20 year (5/92) SCI anniversary. I finished.

[Lustre]

I'm t12-l1 post almost two year, I can walk and run, I stumble when I run quite a bit though, but walking is fine. I was in my chair less than 2 months post injury. My rehab team is wonderful, brought me to my feet very soon after I cam home from the hospital. I still have limited sensation in both legs and cant not feel the ground All in my right leg.

[SCI-Nurse]

I'm t12-l1 post almost two year, I can walk and run, I stumble when I run quite a bit though, but walking is fine. I was in my chair less than 2 months post injury. My rehab team is wonderful, brought me to my feet very soon after I cam home from the hospital. I still have limited sensation in both legs and cant not feel the ground All in my right leg.

I sustained a crush injury in 1992. I had a complete dislocation of my spine between L1-L2 with an L2 burst, and my L3 and 4 were damaged as well. The damage to my spinal cord was significant. and was classified as a complete--but that was changed several weeks in to my recovery-- I was in a drug induced coma for several weeks on a vent. My recovery was 18 months long- first in a wheel chair, then a walker with braces and then canes with braces, a cane to nothing.

So, I am an incompletely para- who walks. I have some paralysis in my right leg and cannot feel the ground with my left foot..I stumble and fall sometimes. I believe I was incredibly Blessed by God with the Doctors that cared for me.

My daughter helped me "learn" to "run" again- and she and I ran a half marathon in November 2011- to celebrate the coming of my 20 year (5/92) SCI anniversary. I finished.
And of course you have a paraplegic (not a tetraplegic or quadriplegic) injury...so you can't be a "walking quad".

(KLD)

[tweez]

Hi,

I had a motorcycle accident compression fracture at t8 had it fused within a few hours (received "meth" as well) around 15 1/2 months ago. The spinal cord was bent and bruised. Initially ASIA A. doctors never told me I wouldn't walk again but I could see in their eyes things didn't look good. I was told that with these kind of injuries it is wise to wait 12 weeks before giving a more reliable prognosis. Reading this thread I can understand why. Pretty much everyone that had a good recovery had some good signs of movement in their legs within that period. I had only sensation coming back but that also stopped at around 4-5 post-injury. Had good B&B&sex recovery within that period and the improvements there keep on coming (still incontinent thou) , I think with time it has a good chance to come back close to normal.

voluntary movement in my legs has seen little improvement. With time, spasms and spastic have increased and every time I try to move my legs voluntarily they make their own things (bending the knees mostly). After 5 months of rehab at home everyday with a PT and swimming, I saw little improvement so I went abroad in a clinic to do triple 6 rahab (6 months, 6 days a week for 6 hours). I did mostly weight-supported "walking" in parallel bars with braces on the legs. After 4 months I was able to ambulate without weight-support and a little on a walker. My spastic legs progressively allowed to remove the knee braces and use only AFOs.

For the last 5 months I've been home, had parallel bars made and I do a few hours a day on it everyday (I do nothing but that as a matter of fact). Improvement keeps coming mainly in that my Central Pattern generator is trained to do steps-like movements (I bend my knee when I do steps for the last 3-4 months) and balance is slightly better. However, I have no voluntary muscle control below my abs and this honestly is very discouraging. I have tried swedish crutches but it still feels like i'll never be able to walk on those. Also, I cant stand up unless I have the parallel bars hold on to. Usually when I stand up, my legs start making dance-like moves for a few seconds before they calm down (that is why I cant rely on a walker as that would mean an immediate fall).

My leg muscles are much stronger since I am able to stand up (in fact looking at my legs you almost cant see any atrophy anywhere) but I think that spastic and spasms are more responsible for it than my voluntary muscle work. I was advised to take baclofen or sirdalut but upon reviewing medical literature I have noticed that it might reduce spastic but it also reduced your muscle strength so I opted out.

Having said all that, I am very happy to be able to stand on my own and do some steps in parallel bars (also a little on walkers) with AFO but for me this is still not walking and I have little hope to be able to come back to a normal life again (being a community ambulator) and my life and dreams really feel shattered, I wake up every morning and feel like there is no sense for me to go out of bed (which takes me around 15 minuted with one person helping me by they way). I know I might sound spoiled and negative, but i'm sure many on this forum relate to what I'm saying.

I notice that most people that get good recovery are cervical injuries, followed by lower-back injuries. Mid-thoracic injuries (t1-t9) very rarely get substantial improvement if it is not seen within the first few weeks post-injury.

People around me tell me that I am pessimist and shouldn't lose hope (they say that while they plan their next vacation to Tuscany for instance - meaning that its easy for them to say when they have no idea what they're talking about or what it feels to be in this condition) but I am highly educated and knowledgeable in this matter and I would consider myself more of realist than a pessimist.

So, to everyone in this thread: Yes, people often recover more than what doctors tell them they will. Yes, you should make thousands of hours of exercise post-injury to maximize recovery (even if I can't walk, the fact my legs actively bear my weight and make step-like movement has brought immense benefits to my health). No, as of August 2012 there isn't a single proven therapy (not even talking about a cure here) that helps recovery except exercise - I really mean nothing, people keep on telling me "you have to try everything" What is everything? Stem-cells? Surgery ? Pills? Waste of time, money and empty hope, I rather concentrate on exercise.

To all those that had a nice recovery, never forget that it is luck in the first place (and of course a lot efforts and rehab) that you injury wasn't worse than what it was that has allowed you to recover so be thankful to god for that , or whatever else you believe in. To all those (like me) that did (and still do) their best to recover but are not getting the results that allow them to gain functional walking, keep trying (at least it will keep you healthier) but be realistic about possible outcomes and don't blame yourself because things ain't working out, it's not your fault that some recover and you not, simply your injury is worse than them. People go in space, make supercomputers and transplant hearts, but the spinal cord is a mystery still. About 15 years ago there was big hopes that some regenerative therapy will come soon (within five years as they were all saying) but now that we make more research on the spinal cord we realize we actually know much less on it than we though and it is incredibly complex. Funding is low, a lot of pharm companies prefer things they are now because a SCI patient makes a lot more money for them without a cure then with a cure and research for a cure is very expensive, hasn't produced any significant result since the rise of medicine (centuries ago). They way things are going , a median forecast for real helpful therapy is 20-25 years (it might be sooner, might be later, might even be never although i doubt it). They very little efforts made towards finding a cure combined with the difficulty of the task just doesn't allow me to realistically hope for a cure sooner. People like Jerry Silver and dr. Wise are awesome and have my admiration because they try hard and aren't in it for the money (not only at least) but let's face it there's only a handful of teams like this in the world so we can't expect miracles here. I spoke to a person from Acorda and I have to say I was disgusted by how little they seem to care (about pushing forward ch'ase for instance) and they absolutely see no sense of urgency in moving forward. The only things important for them is to make sure that they don't lose any money on trials if they're not guaranteed to make money, and they don't want to sell the patents to someone else who is more motivated than them because they wouldn't forgive themselves if they weren't the ones who make all the money when and if a decent therapy is found.

I know it's a little off topic but I think it's all interconnected in a way.

I have a question for dr. Wise in the end:

I see some people saying that even with good recovery they lose a lot of it after years or decades which is for me very surprising and frustrating. I havent seen any papers published on that. Do you have any idea why that is happening? Thank you

[woman from Europe]

It is something nobody is talking about. It is a little secret the health personel keep for themself but it happens. I did walk for 34 years without any aid and slowly I lost the strength I had. I am have now been a wheelchair user for 8 years. It seems to me like it happens to everybody, I know at least 5 persons here and I don't know anybody who is still walking after 40 years post. It seems to me it starts when people are around 50 years old, the body is getting older, the normal aging is catching us easier than the AB because we have already lost so much.

Wise can explain it. I have written emails to him about it because nobody here wanted or could give me the answer and I got the answer.

[swh2007]

I think there are a couple of pamphlets from Craigs about aging with an incomplete SCI. They predict deterioration earlier than the AB person. I am sure it varies per person like everything else with SCI but, at 60, I can say that I am busy taking care of my bucket list things that I would rather not do in a chair if I have a choice.

[ReArkou]

Hi,



Very nicely put and I totally second you practically on everything you posted above. I am coming from a severe motorcycle accident as well 2 years ago and although I'm a bit lower that you are (T11, have the abs), I have an even 'worse' injury ASIA A complete + conus injury with flaccidity (and among other fractures I sustained in my accident and must be careful of)

What I truly also share is that we need to keep on exercising, not actually in order to walk but to keep the existing health not to deteriorate..

I love swimming as I was a water polo player, I would like to take it more seriously (also because bed exercises and walking on parallel bars are annoying :-( but its tough to find constantly the time and effort sometimes, especially if you are also working full time, living on your own, and fighting the everyday routine from the wheelchair position!

However, we need to be realistic and I would add a conservative optimism that things will change to beter in terms of cure/therapies and quality of life boost for SCI patients. At least we are still here and life is still beautiful if you consider that its the 'trip that matters'...

[CanSasman]

Hi, 55, male, 21 years incomplete, C5-6, 4 months hosp.,1 year outpatient therapy.
I worked so very hard to leave the hospital without a wheelchair. That was foolish male pride, I should have taken the chair for back up.
I have been part of an ongoing study "Spinal Cord and Aging" this whole time.
The results have been published if you would like to see them. It is way too accurate.
http://www.craighospital.org/Left-Nav/Spinal-Cord-Injury/Health-and-Wellness-Information/Educational-Brochures/Maintaining-your-health/Incomplete%20SCIs:%20Down%20the%20Road ... you may need to cut and paste.
I just had my last re-eval 2 weeks ago and I don't think I communicated very well what I meant by "feeling weaker".

I see a real need for a place for incomplete quads, some kind of online support community. Most medical professionals know little to nothing about incomplete's. We are such a small percent of the overall SCI community we get overlooked and sometimes ignored by those we trust our medical care to. Try explaining Autonomic Reflexia to anyone and it's usually a glazed look from them even when you think you have explained it.
I know there are plenty of you here who know exactly what I'm going through because I'm sure many of our "treatment" stories are similar.
I look forward to finding some way to find or have a place for incomplete quads to have some kind of internet community.It would be helpful and hopeful to feel like somebody gets it/us/me.
Keep up the good fight and we shall see results (I think I just typed that to me).
Thanks for your time.

CanSasman

[porchdog]

Hi, 55, male, 21 years incomplete, C5-6, 4 months hosp.,1 year outpatient therapy.
I worked so very hard to leave the hospital without a wheelchair. That was foolish male pride, I should have taken the chair for back up.
I have been part of an ongoing study "Spinal Cord and Aging" this whole time.
The results have been published if you would like to see them. It is way too accurate.
http://www.craighospital.org/Left-Nav/Spinal-Cord-Injury/Health-and-Wellness-Information/Educational-Brochures/Maintaining-your-health/Incomplete%20SCIs:%20Down%20the%20Road ... you may need to cut and paste.
I just had my last re-eval 2 weeks ago and I don't think I communicated very well what I meant by "feeling weaker".

I see a real need for a place for incomplete quads, some kind of online support community. Most medical professionals know little to nothing about incomplete's. We are such a small percent of the overall SCI community we get overlooked and sometimes ignored by those we trust our medical care to. Try explaining Autonomic Reflexia to anyone and it's usually a glazed look from them even when you think you have explained it.
I know there are plenty of you here who know exactly what I'm going through because I'm sure many of our "treatment" stories are similar.
I look forward to finding some way to find or have a place for incomplete quads to have some kind of internet community.It would be helpful and hopeful to feel like somebody gets it/us/me.
Keep up the good fight and we shall see results (I think I just typed that to me).
Thanks for your time.

CanSasman


You are correct. I joined a sci/d group locally and was not well received by most of those in the group as I was the only one who walked in with a cane. Last years appointment with a therapist at the V.A. in Memphis was disgusting. As a result I will see a different one this year or none at all.

[slgiblin]

I am a C4/5 walking quad 2 years post. Spend 3.5 months inpatient then 18 months outpatient. Took 5 months to leave the chair and through a lot of work use forearm crutches.

I agree, in therapy or at the adaptive gym I go to there are only 3-4 walking quads, the vast majority are bound to a chair. Although we all have so much in common it would be nice to chat with more walking quads.

[pgilstrap]

Recent C-7 (Oct. 13 2012)
2 months ER/ICU then 20 days rehab. But 50 lbs. lighter mostly muscle tone, just didn't get much out of it. Now 4 1/2 months arms are getting stronger (still crappy forearm but tricept working luckily) forcing stomach or trunk to wake up currently...
Now feeling comes and goes stomach and legs. B&B getting better.
My question is it seems my muscles are awake and functioning to the point of cramping at times. My legs have a lot of movement, they bend and now have lifted a couple of times. I can also make them twitch while I am sitting in my chair. As I flex the muscles in my legs I can feel it but not see it only the twiching. Is it just in my head?

[porchdog]

Recent C-7 (Oct. 13 2012)
2 months ER/ICU then 20 days rehab. But 50 lbs. lighter mostly muscle tone, just didn't get much out of it. Now 4 1/2 months arms are getting stronger (still crappy forearm but tricept working luckily) forcing stomach or trunk to wake up currently...
Now feeling comes and goes stomach and legs. B&B getting better.
My question is it seems my muscles are awake and functioning to the point of cramping at times. My legs have a lot of movement, they bend and now have lifted a couple of times. I can also make them twitch while I am sitting in my chair. As I flex the muscles in my legs I can feel it but not see it only the twiching. Is it just in my head?

Can you stand with or without help?

[pgilstrap]

Have not had the the chance or trust yet. I didn't even know it was tried so early. I would try it, I just thought (from reading) wiggling toes then moving legs meant brain and muscles were working together? Then time to stand up or at least try.

[goredeisel]

I am an incomplete C6 injury and could walk with the ad of a walker or arm crutches. I don't use braces at all. I'm 4 years post injury now?

[nelly96]

Epidural hematoma .Complete T4 paraplegic -no sensation, motor nor reflexes below that level.Absent anal wink.
The paralysis happened at 4 am by 1pm I was being wheeled into theatre at the spinal hospital.
48 hours later I could move my big toes.Within a week I had normal sensation up to about T11 dermatome .Above that level its always felt strange.
After 2 months and lots of physio I could hobble home.By a year walking and running.Bowels reasonable in the sense I don't need intervention but I do have sensation and ability to predict with about 5 minutes notice.
Bladder is spastic and I have a suprapubic in now due to interstitial cystitis/painful bladder syndrome.
I still count myself very lucky.

[nelly96]

Sorry,just realised title of thread was " walking quads". Got distracted reading the posts.

[SpacemanSlam]

I am a c4 incomplete. I can walk, have slight hitch from some weakness in the right leg. have walked up to 4 miles at a time unassisted. Majority of injury is in my right shoulder, I have mild hand and lower arm movement but cant lift my arm.