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I am writing on behalf of my brother:
Is there anyone out there that has suffered a stroke in the spinal cord? Please tell me your story and chances of recovery. My brother's is in T2 through T9, he has sensation but not voluntary movement.
His accident happend on august 17 and barely survived. During his neck Surgery to fuse C1, and C2 and base of his skull he suffered the stroke in the spinal cord.
Let me know
Thanks
I had a spinal cord stroke almost 10 years ago. Went in to remove a benign tumor that was supposed to be easy, no problem....came to in recovery a T7-8 para. Of course the doc surgical records are glowing knowing the results when he wrote them....so, no legal satisfaction...but, you asked about recovery.
As you'll read here all SCI's are unique. They told me you only get back what you get back the first 3 months, then first year, then first 2 years....well, my last motor recovery was some toes on the left at 8 year mark. So, my advice....keep tryhing to move stuff daily, and constantly. If you're watching TV, visualize and try to tap toes, sitting at the table eating...think about kicking up the legs like you are on a swing, laying in bed in the AM when you wake up...think about marching and try. My theory, the more signal you route from brain down, the more the body will want to do something with it. I've printed it here before, suggest a montra for SCI of "adust, adapt, but never accept"....once you accept, your hope goes down. Keep at it ! Good luck.
nick had a spinal cord stroke. his was 1 day prior to delivery. his was t3-t7.... i would never give up on recovery. we are seeing improvements everyday. you are welcome to go to his site at www.caringbridge.org/visit/nicholasdeyo if you would like more information or feel free to email me.
thanks - tanya - nick
Thank you for sharing with me.
I really like your Montra ! ddombr132. It is geat that you are getting some movement back. I hope you are practicing your own advice. Did you throughout your recovery use any of the e-stim thechnology?
Thank you Nick's mom, I will check his website. He is so cute :-)
I would love to hear more stories and advice to tell my brother
I did use some estim during rehab (first 3 months), and found it mentally encouraging. Physically, I didn't have the opportunity to do it often enough to see bulking up. But it was good to know the muscle, tendons etc still worked it was just a signal thing.
I have since gotten a home unit...again, I should use itmore maybe, but I found time to be a serious issue. WHen I lay in bed, I fall asleep from fatigue (I go 18+ hours a day) so having it attached not a good thing.
I have tried the estim bike...love it. But tough tot get one from insurance. SOme places that do have them have low cost usage programs (like $10/hour I hear). Makes it affordable, but free would still be better.
Hi 1newlife2:
I had a spinal cord stroke a year and a half ago. They are not positive what it was caused from, but they think the strep throat virus got in my blood… the outcome is the same, blood loss to the spinal cord. My infarction is C2-T2.
I have recovered well, so please know it does happen. I walk and run, most people would say like normal. I do have other issues, but from the outside I seemingly live a normal life. I did not use e-stem just the good old fashion therapy were the PT moves your leg for you, but I as able to move my legs slightly within a month of the stroke.
I hope your brother sees much more recovery in the months to come and that there is a cure on the horizon for all of us.
Luckydog
Thank you Lucky dog. I will tell your story to my brother.
Thanks ddom I will check on availability for hoursly usage, not fun to live in a small town.
ALL
What experience you have with Rhabilitation Institute of Chicago? I am thinking about checking it out and moving him there for his next round of inpatient rehahd once he gets over his awful wound.
I have also hears that there is a good place in Atlanta
It appears that both these places use a certain robot, I know chicago has the lokomat and I am not sure if Atlanta has the same thing or the newest robo-suit.
I will check them out but if you know anything please let me know
Thanks
another place to consider is the kennedy krieger institute in baltimore maryland. i have had nick there several times, the dr. we worked with was dr. mcdonald, he was also the dr. that worked with christopher reeve - aka superman- if you would like more info, please email me todddeyo@sbcglobal.net
thanks tanya - nick www.caringbridge.org/visit/nicholasdeyo
My daughter had a spinal cord stroke when she was 2 months old leaving her a T-11 para. At first she had feeling but no movement, she is now 3 yrs old and walking with the help of braces. Never give up hope of improvement. Its been over 3 yrs since her stroke and we see NEW movement everyday.
We also took Reece to Kennedy Krieger and worked with Dr. McDonald. If you have the means, I do recommend you go see them there. We use E-Stem on her and I can't really say if it works or not b/c we do so much with her that I don't know what is working and whats not. So we just keep doing everything!!!!
Wish you the best of luck!!!!!!
Tiff :)
Thank you for sharing your story tiffany. My fear for my brother is the length of the spine in which the stroke happened, T2 to T9. I am printing the Motto that ddomber1332 sent me and will post it in his room
I have checked with Atlanta and Chicago, and now we are waiting for the games insurance is playing to see if he can go to the LTAC and take care of his wound or waste away his time at rehab. If he goes to LTAC for wound care the chances are his halo will come off and he will technically have another 60 days of inpatient coverage starting January. I think that is exactly what the insurance compnay is trying to avoid by playing these games. They have seen his wound shrink in the last week and they think insurance is going to question if he needs to go to LTAC anymore.
It is extremely frustrating to see how these insurance companies don't care about your individual conditions. He has been on reduced therapy schedule since October 29th wasting his time at rehab center.
Sorry for venting!!
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