View Full Version : Twisted Spine? Recovery possible?!!?!?
10-01-2004, 06:34 PM
Hey everyone, I am writing to you all today to find out if anyone has heard of someone "twisting" there spine? I am desperately searching for some help.. I am 22yrs of age and my cousin who is 23yrs of age was injured on the job. He fractured his C6 and C7, compound fractured his right arm and broke some smaller bones in his chest. My cousin has and will always be like a brother to me so that is why i am here today. He can lift both of his arms and close his un-injured arm's hand, but he has no feelings as of yet from the shoulders down. I know it has only been 4 days since the accident, but I was hoping someone here may have heard of this before. First we were told he would be quadrapalegic, then he moved his arms, now they are saying he'll never feel anything from the nipples down, but today he said he felt them insert the catheter in his rectum... He still has severe spinal bruising as far as we know and his spirits are amazingly high. He is currently being considered for the "ProCord Clinical Trial" in GA. If anyone can shed any light on this type of injury or simply want to show their support.. please feel free to post anything that I may use for my own knowledge or to cheer him up and show him that he will indeed walk again.. thank you so very much, good luck to all...
10-01-2004, 06:49 PM
Note: My cousin is not your usual patient.. He is literately NFL lineman status... He is 6'3'' 378Lbs, he is in good physical health and was benching 405lbs before the accident and had a 1700lbs leg press. So my next question is.. Do you think that his sheer mass will be advatageous or not?
10-01-2004, 07:26 PM
How was he actually injured? The spine (bones) can be fractured by over extension, over flexion, or excessive rotational forces. The spinal cord is contained inside the spine itself, and protected by it. Fractures or dislocations of the spine can damage the spinal cord by bruising or crushing, or by interferring with the blood supply.
It sounds like he has an incomplete cervical injury. He is considered "quadriplegic" (technically tetraplegic) if he has any impairment at all of his arms, even if only of his hands or fingers. Most people with a C6 SCI can flex their elbows, move their shoulders and partially move their wrists (but not fingers). Those at C7 have more wrist and elbow strength. Fingers are individually moveable starting at T1.
Is he definitely going to Shephard Center in Atlanta, regardless of whether or not he is accepted for the ProNeuron study? This is an excellent center. Is he covered by worker's comp for this injury? If so, he should have a case manager who makes sure he gets the best care and appropriate equipment and services. He should be moved to Shephard ASAP.
The fact that he can feel a catheter (usually inserted into the urinary urethra, not into the rectum...are you sure about this???) means that his injury is at least sensory incomplete (ASIA B). It is much too early to if he will get more back, and how soon. This takes at least 2 years, although it is more likely if he shows some improvement soon.
There is no way to predict at this point if he will walk again. It is important to maintain hope, but also to make realistic plans for how to get on with life if this is not possible. Luck has more to do with it than how hard he works, although this will make a big difference in what he does with what he has left and gets back.
His height and heavy weight may make his recovery and rehabilitation difficult. He is likely to loose a lot of weight in muscle mass very quickly below his level of injury. Being heavy makes transfers and activities of daily living much more difficult, regardless if it is fat or paralyzed muscle. Finding an appropriate wheelchair, van and other equipment will be difficult unless he looses significant weight. Being in good shape is in his favor, but he needs to start an active rehabilitation program as soon as possible to avoid getting weak in the muscles he can already control.
Welcome to our site. We will try to answer your questions. Get your cousin on-line here too as soon as possible.
10-01-2004, 09:47 PM
This is how my cousin was injured as he described it:
He works for a tree service and was asked to stand on a "bobcat" (small front loader) by his boss.. (using him as a counter-weight) when the machine was backing up, it went off the road and bounced, throwing him over the front of the machine, he said that he remembers getting his hands out, his right had hit first he said, (compound fractured forearm), then he said the back of his head hit the forks and his legs got caught on the cage in front of the machine. Then he remembers rolling off to the side. His good friend witnessed the entire event and ran to his aid and held his head in position so he wouldn't move (his friend is ex-military, so I almost positive he knew the basic procedure) As far as him being accepted into the program, we are waiting for an individual to evaluate him. He has already had one surgery on his neck, they went in threw the back and fused the discs (i believe, i have to confirm this), he is scheduled for another surgery in about 1 week. They are entering from the front this time. I have no idea how or what they are exactly doing... As far as wheelchair, transportation, and home modification.. The wheelchair may be difficult to find.. Home modification is the easy part as my father and I have done it for years. He did say today that he could feel someone touching his fingers, even though he has no motor skills.. what does this mean? if anything? He is expected to be in the halo for at least 3 months.. so getting him on this website will be difficult, I will do my best to relay his messages/feelings/etc.. whatever he tells me i will document and bring to your attention.. thank you so much for the help... http://sci.rutgers.edu/forum/images/smilies/wink.gif
Bobz, please carefully read the article linked above, print it and take it to your cousin. Dr. Young summarizes the most crucial bits of info in this. It may be the best info you could ever get at this point.
As KLD said, it's just way to early to tell for your cousin. I've been there, most of us have, and I know how frustrating it is to hear this. But...every injury is different, time will tell. Tell him to focus on every muscle he can't move, and TRY. He's in spinal shock, that's the only way he can tell what might come back. Anal sensation this early may be a good sign. If he gets approved for the Procorda trial, excellent, I've seen some impressive results there.
Again, read that article. Have him read it. He needs to dig in, he has the fight of his life on his hands. We can't tell him that if he fights hard he'll win, but we know that if he doesn't, he's gonna lose. When the going gets tough, the tough go to REHAB. All the best-Beth
P.S. Any questions, any time, we'll try to help.
10-02-2004, 08:29 AM
Bob, I had my surgery and rehab at Tampa General. If I can provide any information about Tampa from an SCI perspective let me know. Mike
T12 Incomplete - Walking with Crutches, Oct 2003
10-02-2004, 01:27 PM
From your description, I think that your cousin is very lucky. The fact that he can move hand already and has rectal sensation only four days after injury means that he is incomplete and very likely to recover more function. The Procord trial is the transplantation of activated macrophages. I don't know whether he will fit the criterion for that trial. Please let us know how your cousin is doing. Wise.
Today I went and talked to my cousin face to face, just me and him. Today he ate a full meal, steak/vegies/jello/and some cheesecake :P. He can close his hand and can feel all fingers; he said the feelings are greatest in his thumbs but decline in order from thumb to his pinky, he can close his hand,bend his arms, and has minimal strength in his tricep. He was visited by a therapist today who pulled and pushed on his arm. (the one that's not compound fractured), said he has good strength is his bicep and can resist with his tricep. Also, he felt it when they inserted the cathedere. They removed a quart and 1/2 of fluid from his lungs. He is now breathing very well, still spitting up flem but that's from smoking i presume. He told me that he keeps feeling some sort of sensation going through his legs. He says it feels like "short bursts, like spasms going to his feet and all the way through his legs.." He is still very swollen and is scheduled for his second surgery on tues. We are told this should be his final surgery. :P So all and all today was a good day, his spirits are amazing, he said; and i quote.. "I just want to heal from this next surgery, after that it's rehab, 24/7, I'm gonna give it everything i got and then some." I told him he better or i'll take out a loan for an X-drill sargeant http://sci.rutgers.edu/forum/images/smilies/smile.gif He is being realistic and realizes the time frame.. today were told.. 9 months in the hospital..I'll post you guys again next time I talk to my cousin.. Thank you so much, god bless all of u..
10-03-2004, 06:56 PM
9 months would be extraordinarily long now days. Most insurance forces people out of rehab with an injury such as his after 6 weeks. Workers' comp can be a little more flexible. Does he have an assigned case manager yet? Has he met with his case manager? This is critical as this person can make or break his funding for rehab, special equipment, etc.
10-03-2004, 06:57 PM
Mike: Please.. any information regarding the hospital would be greatly appreciated.. Thank you so very much, and bless you
Saw my cousin face to face, 1 on 1 today.. He told me he can feel his fingers http://sci.rutgers.edu/forum/images/smilies/smile.gif greatest sensation being in the thumbs, and then declining as you move toward the pinky (said pinky has little to none), he still does not have voluntary motors skills in wrists or hands yet. A physical therapist tested his biceps/triceps today also, she did a small resistence test, said that he good bicep strength and can provide minimal resistance with triceps... He is scheduled for a second surgery on Tuesday.. They are going through the front of this throat i believe.. Does anyone know why they do this? Or has anyone had this procedure done before? I guess it's to stablize that portion of his spine, so that he has less chance of reinjury in the future; or at least this is what my uncle has told me. He is NOT going to Georgia. We have a very large family here in Florida and his parents have been advised by a number of doctor's and therapists that he should not be taken away from this kind of support. The hospital said they have never seen this many people show up
http://sci.rutgers.edu/forum/images/smilies/smile.gif Trust me when I say alot, I believe it's been around 100 people that have been to the hospital since monday.. http://sci.rutgers.edu/forum/images/smilies/smile.gif, so many that we are now limited because he got exhausted just trying to see everyone.. so now we only see him when can notify a nurse and then she asks him who he wants to see, and how long... We all want him to heal, so we all have accepted the fact that even though we can't see him.. we can relay messages to him to whomever he decides to talk... it's kinda frustrating not being able to see him when he's only 100ft away, but I get to see him alot http://sci.rutgers.edu/forum/images/smilies/wink.gif.. I'll keep you guys posted.. thank you so much for the help, bless all of you
10-03-2004, 07:05 PM
sorry, posted 2 things with same info today, sorry... as far as time, it is 9 months in hospital, (we are told) and insurance wise... well, all I can say is there may be a personal lawsuit, I cannot go into details, or at least I can't "post" them.. http://sci.rutgers.edu/forum/images/smilies/smile.gif as I do not wish to say something I am not 100% positive on regarding such a matter.. I will keep you all posted though.. Thx again,
10-04-2004, 05:30 AM
Bobz, is he covered by workers' comp? A law suit is not a source of funds for rehab. A typical personal injury suit takes at least 2-3 years to resolve.
10-04-2004, 08:33 AM
No he is not.. We found out that he was "off" the books, and to top it all off. The owner of the company is not licensed, insured, or bonded. And also, he was the one driving the machine (indicated in police report).. so I have no idea where it will go from here... I believe that not being licensed or insured is indeed a criminal offense, but this I am not sure of..
10-04-2004, 01:39 PM
Does he have any health insurance at all? This will be critical to get the best rehab.
10-04-2004, 04:24 PM
Bob, I'd like to wish your cousin the best of luck. We've all been there. Once his surgery is finished, Tampa General will move him to the rehab section of the hospital - that is in a different building than he is currently in. He will get rehab 7 days a week (only once a day on weekends though). I was like the SCI Nurse said - after 5 weeks they discharged me - that's really all my insurance would pay for.
Once your cousin is moved to the other building there is a spinal cord office on the second floor that he should visit. They've got all kinds of handouts and videos that he can watch while he is there. I would go there and just hang out - there are several SCI people who work there who can provide a lot of good advice. The other bit of advice I can give you is to get him registered with the Brain and Spinal Cord Injury Program (BSCIP, phone #(727) 570-3427. This program provides funds for more rehab once your insurance stops paying (if you're showing progress) and for remodeling a home and for other things. If you get a settlement you've got to pay them back but I used them for getting contacts on who to use for putting up grab bars, setting up transportation to and from rehab (once I was discharged), and getting a temporary ramp for my house.
If you have any questions let me know. Mike
T12 Incomplete - Walking with Crutches, Oct 2003
good day today http://sci.rutgers.edu/forum/images/smilies/smile.gif as my cousin is able to use his wrist. He has control over his wrist latterly and vertically. He has amazing bicep strength also.. I'll put it to you like this, when i hold his wrist for resistance, if i let go of it, he'd probably break his own nose http://sci.rutgers.edu/forum/images/smilies/smile.gif and he is also stating that he had some sensation in his feet.. Well I'll keep you guys posted...
10-09-2004, 07:56 PM
Hello again.. Today I saw my cousin again, and slowly but surely he can close his hand, very little, but he indeed can. Mainly his thumb, pointer and middle fingers are contracting, he cannot re open his hand though. The therapist ran her finger along the bottom of his feet (up the center) and his legs jumped. He says he did not feel it, but when you run your finger along the bottom of his foot his quad will tighten. What does this mean? Good?Bad? He is going to Tampa General Hospital for rehab in about a week we are told. So that's my update today.. thx again to everyone who's posted :P :P
10-18-2004, 06:36 AM
Bobz, this leg movement could just be reflex activity or spasms. It would be important to know if he could initiate it without someone stroking his foot (which can trigger a reflex). Keep us up to date with his rehab progress though.
10-19-2004, 12:17 PM
My cousin cannot initiate anything below his chest. http://sci.rutgers.edu/forum/images/smilies/frown.gif He can close two of his fingers now, very slightly, but he cannot open them. He has regained alot of control in his biceps and forearms as far as raising them and turning them and such and he told me that the feeling in his arms feels almost normal again. They drew a line on his chest from where what he could feel stopped. And 2 days later i was there and he can now feel about 1 to 1 1/2 inches below that line. I do believe that he is beginning to struggle a little emotionally however. We may be looking at a very bad situation as far as insurance and treatment are concerned. Does anyone know of any funds for these type of injuries? Or is there books/videos that i could get for helping someone. Cause I was told he may be sent home within 3 weeks time. And honestly I am one of the only members of the family with the strength to move him, at all. Hopefully all works out and he can get the correct treatment that he needs. If not, I will need help desperately from anyone.. till then however, please keep him in your prayers and I will keep you all up to date on his condition.. Thanks to all who post here... :P
10-19-2004, 01:58 PM
Bobz, I hope you read my post a few down. If you haven't been contacted by the BSCIP, phone #(727) 570-3427 you need to contact them about funding for remodeling your cousin's house, rehab, etc. Good luck to you and your cousin. Mike
T12 Incomplete - Walking with Crutches, Injured in Oct 2003
10-19-2004, 03:11 PM
Is he eligible for Medicaid? Is he in a formal SCI rehab program now? If so, where?
He is not a military veteran is he?
If he cannot transfer himself, look into getting him a mechanical lift. They are expensive, but often available on ebay (search under "patient lift"). This would allow others to transfer him in and out of a wheelchair or commode chair without risk of injuring themselves. At his level he should eventually be able to help with his transfer if not do it entirely on his own.
Hey there Bobz - Sorry to hear about your cousin. I don't know how I missed this thread.
It may not sound as important as moveing stuff, but finances are. He should get the ball rolling on Social Secutity and Medicaid paper work as soon as possible. Vocational rehabilitation is also a good place to cantact, they help with buying equipment and remodeling the house. If it is possible, and it sounds like it is concidering his support network, you should organize a fund raiser for him. Mine brought in a hefty sum and all of it was used up in no time. They had things like a poker run, dart tounament, five live bands, food, silent auctions for donated prizes, and other stuff that I can't remember all for a ten dollar ticket and/or donation. I happened to get a day pass from rehab to attend. It was about two months after my accident and was quite a morale booster. Other friends had a car wash that did pretty well also. It takes time and organization to do well, but it will help him out money wise in the near future. The bills keep coming and it is almost impossible to catch up on a fixed nothing income.
Is he going to be able to go to a rehab place? this seems so very important to me. I can't imagine not having gone to the Rehab Institute of Chicago. It was a two and a half hour drive for my family sometimes, but with all the therapy there is to do you don't have time to visit any way. I did have health insurance for the first five months after my accident. I don't know how that works without any. His case manager should know if there is anything he can do. I had a friend up at RIC that had no insurance. I don't know how all that worked with him though.
As far as his sensation and arm movement goes, It sounds promising to me. Like Betheny said, Every injury is different...time will tell...bla bla bla. He will get soooo tired of hearing that, it will make you want to scream every time some one says it. It holds true though. I guess the earlier stuff starts to move and feel the better the chances of more recovery. Doctors won't have any answers, but don't let that stop him from asking as many questions as possible.
I was told to plan for the worst when it comes to getting the equipment and house set.
My family is also in construction. They had a ramp built and my doorways widend for me when I got home. My brother tore my bathroom apart and put in a roll in shower shortly after I got home. Later I found out that there were agencies that would have paid for it to be done. Hhhhmmmm. Done now and pay for it VS waiting and having some one else pay for it. That is a toss up for me. It was nice to have it done when I got home, but it would have been nice to let some one else pay for it also. I guess it kinda just goes how it goes sometimes.
Keep visiting this site and get him here as soon as he is ready. It is most helpful. Dare I say... It saved my life in some ways. Information up the wazoo as soon as you get the hang of navigating it. The emotional support is overwhelming at times. Don't be afraid to ask any questions at any time. The rest of the family and friends could use it for information and support also. You found it quick thats good, it took me a year. Any ways I hope that I could be of some assistance. Best of luck to you all and do keep us up to date.
10-21-2004, 12:41 PM
Hello again.. my cousin is supposed to be moved to Tampa General Hospital tomorrow and then he will begin his "official" rehab.
Thanks again to all of you!
As far as the Fundraiser thing, here's what we've go so far:
Deep Sea fishing trip, Donation Jars around the county, A Concert with 3 to 6 local bands, Golf Tournament with a raffle.. Working on another golf tournament, car wash, rummage sale.
As far as my cousin recieving treatment; this is a question I still have myself. I don't know what's going on with the insurance thing, his parents are taking care of that. I do know that the owner of the company was not insured/licensed/bonded. So there goes work man's comp. If my cousin is not covered for rehab then I have no idea what to do!
He was sick for the last 2 days. So he's been real tired and hasn't done much. He was vomiting and stuff, they did a blood test and it came back ok, no infection, so they believe it was the food. So now he's really dying to get out of the hospital cause he can't stand the food.. http://sci.rutgers.edu/forum/images/smilies/smile.gif Well I'll keep you guys posted..
Oh yeah.. he's NOT a military veteran, and I think medicaid is available, but they will only help for 45 days...
"ahh yes.. the plot thickens."
It sounds like everyone is on top of things. That's good. Keep it up and keep posting.
11-04-2004, 07:51 PM
Need help! Cousin is being sent home December 2nd! anyone know of a way for a therapist to come to his home to help?! A few hrs a day kinda thing! We are in a crisis as of now!!!!!!!!!!!!!!!!!!!11
11-05-2004, 07:58 AM
If he was injured on the job, this should be covered by the State department of Labor and Industries. They should have appointed a case manager to help with these things. You could start with his employer for information on who to call or with the facility where he is currently cared for. They have to be billing someone.
Medicaid is the only thing that I can think of. If he hasn't had an income he should be eligable.
11-06-2004, 03:08 PM
Note that Bobz said his cousin is not covered under workers' comp, but I would recommend contacting the state agency responsible for this anyway to at least file a claim against the employer. He may also have too many assets to qualify for Medicaid until he has spent down considerably. A suit takes too long.
He should be able to do a home exercise program when discharged. The rehab center where he is should teach him a program. Are friends and family raising money, and if so for what? Exercise equipment not covered by insurance and a van are popular options for this. He is unlikely to get any home or outpatient therapy until he has an arrangement for insurance or private payment.
11-07-2004, 07:35 AM
I just got this list from the Christopher and Dana Reeve Paralysis Resource Center. Maybe one of these links would be helpful for your cousin. You should also check out their website... www.apacure.com (http://www.apacure.com[/I])
Grants for Individuals
For those with spinal cord injuries:
NTAF's Spinal Cord Injury Program
www.catastrophicfund.org (http://www.catastrophicfund.org) or 1-800-642-8399
National Transplant Assistance Fund works with the families and friends of spinal cord injured people to help them fundraise for future medical expenses. Funds raised are sent to NTAF and held for that SCI patient. Bills are then paid directly to vendors for things like adapted vans, home modifications, home care and medical bills. The person with SCI must have a social network which is willing to do the fundraising for them.
G.O.A.L.S. Inc. (Go Out And Live Successfully)
Assists with purchases of items like wheelchairs, ceiling lifts, stair glides, repairs to vans.
SCORE (Spinal Cord Opportunities for Rehabilitation Endowment)
Gives grants to relieve the financial burden associated with SCI. Preference is given to young people who are injured while participating in athletics.
Travis Roy Foundation
Since 1997, they have paid out over $240,000 in grants to 54 individuals across the country with spinal cord injuries. The funds are for items like: modifying vans, purchasing wheelchairs, ramps, computers, and other adaptive equipment.
For those with multiple sclerosis:
Multiple Sclerosis Foundation www.msfocus.org (http://www.msfocus.org) or 1-888-673-6287
Brighter Tomorrow Grant Program provides individuals with MS goods or services up to $1,000.00 for car repairs, computers, home modifications, exercise classes, etc.
For those with ALS, Friedreich's ataxia, and some types of muscular dystrophy:
Muscular Dystrophy Association http://www.mdausa.org/news/020528communication.html
MDA will give up to $2,000 for communication technology for those whose neuromuscular disorder has robbed them of the ability to speak.
For those with syringomyelia:
American Syringomyelia Association Project (ASAP)
Bobby Jones Open grants of up to $1,000.00 are available for ASAP members to assist with the purchase of medical equipment (assistive devices, braces, wheelchairs, walkers, etc.). Call 1-800-ASAP-282 for more info.
For those with post-polio syndrome:
Post-Polio Health has $1,000 ($500 maximum per person) available to assist ventilator users in purchasing scooters or orthotics (leg, arm and back bracing and custom-made or modified shoes). For details and application, contact 314-534-0475 or firstname.lastname@example.org
Educational Scholarship Program to assist PVA members
To assist PVA members and their immediate families in obtaining a post-secondary education from accredited colleges in the United States. For the upcoming 2004-2005 year, PVA is offering ten $1,000 grants. www.pva.org (http://www.pva.org) and click on PVA Scholarships or call Trish Armstrong at 800-424-8200 x619.
Educational Scholarship Program for the physically disabled
Stepping Back Into Life, Inc. offers annual educational scholarships to the physically disabled. Deadline for 2004 is May 31, 2004.
__________________________________________________ ______________________For the disabled (not condition or disease specific):
Assists the uninsured in a drug assistance program. One time fee of $25.00 for registering and $6.00 per prescription per month. Also assists the needy with services such as ramp building (to cover costs of materials & labor costs), toilet seats for disabled, shower chairs, car/truck lifts for scooters, house cleaning, bill pay assistance, and errand running.
Medicare Rights Center
Lists national and state drug assistance programs.
Gives small one-time grants to individuals who do not qualify for public assistance but are financially needy. Grants go for car repairs, utility bills, etc. and should be for under $1,000. The average grant is $300.
Wheel to Walk Foundation
Helps children obtain products and services denied by their insurance companies. The foundation distributes funds directly to providers. Previous purchases include gait trainers, forearm crutches, wheelchairs, speech therapy sessions, etc.
Each UCP affiliate gives out money from this fund for assistive technology (wheelchairs, environmental controls, lifts, computers-does not cover cars) to those with disabilities in financial need.
Lions Club International Fund
Helps the disabled with vocational programs.
The Abilities Fund
Does not loan money directly, but supports business ownership for people with disabilities through training and advisory services.
Financial Aid for the Disabled and Their Families 2002-2004 (Scholarships, Fellowships, Loans, Grants-in-Aid, Awards). El Dorado Hills, CA: Reference Service Press, 2002. http://www.rspfunding.com/products/rspbooks/disabled.html
Foundation Grants to Individuals. New York: The Foundation Center, 2003. (13th ed).
C5-C7 Walking Quad
i have a twisted spine i say dont pop pills and smoke crack-cocaine or do LSD i dedicate this to every scagy pill ive poped http://sci.rutgers.edu/forum/images/smilies/eek.gif
01-21-2005, 03:18 PM
I was told the same that I may not walk again. I was fully paralysed after the surgery. I had C2-C6. Tell your cousin the following:
a) Be patient. It takes time before the nerves regenerate. They don't heal like a normal skin bruising. Sometimes, they may not grow but I heard they grow very slowly. It took me nearly a year to be able to walk again.
b) Keep moving. Once he starts to move, help him move. Keep moving in order to help blood circulation. Good circulation promotes healing and healthy life. Bad circulation can lead to negatives such as blood clot, depression, etc.
c) Injury can be structural. Yes, he may walk again. Bruised spinal cords take time to heal. He may have lost some sensations but will regain most. Be happy if he starts to move, that is a sign that he would walk again. Just wait. It may even take two years.
d) Watch his diet. Plenty of water and phytos. I have proven tea helped me in my urine. Phytoestrogens aided me in constipation and "sexual function" (believe it or not).
e) Most of all, believe in the power of prayers. Yes, there is miracle.
Goodluck to your cousin and cheer him up.
12-26-2005, 02:49 AM
Hashem, if you are still around , I am trying to contact you but youve got your incoming email turned off. Would you be able to contact me ?