Do people who were ASIA A, B, C at 24 hours after injury recover function 3 or more years after injury?

[Jesse's Mom]

Originally posted by Betheny:

hope2findacure:
Let me guess, the rehab was tirr? And the doctor's name either began with a d or a P? I'm guessing donova...uh, i mean dinosaur? Glad he didn't pull that doctor god mind game over on your husband! WHY do they do this to us when we are low???? Sorry to digress-Beth

C5/6 incomplete, injured Aug. 2000

Holy WOW!! Thanks Betheny. You said EXACTLY what I was too chicken to say but thought "My gosh, can it be?" Jesse's doctor was Dr. D also at TIRR. I cant really say we had any bad experiences like hope did but he warned us about going out to Project Walk, it being in California and all. Dr. Young and other nurses here at least say that that kind of exercise is good for the body, but at the rehab in Texas I was almost afraid to mention the fact that we were headed to CA for therapy. Got some pretty funny looks, and some more be careful attitudes. Be careful WHAT? That Jess might get better with good physical exercise, and possibly walk and prove that exercise does help and that "you are as good as you are going to get" is not true?

[Wise Young]

Based on 63 votes, this poll suggests that half of the people recovered additional function 3 or more years after injury, including 17% of the voters who were "complete" for 24 hours after injury. This is actually very close to what some of the studies in the literature are suggesting, i.e. about 15% of people with ASIA A will become ASIA B or ASIA C. People with incomplete spinal cord injuries should recover some function but most probably will recover this function within 3 years.

Wise.

[Wise Young]

bump for more votes.

[duge]

Dr. Young
I am 15 month's into my injury I have went from lying in a bed to a wheelchair then walking but have the nerve ending pain in my feet and butt and anal area. those have not recovered one bit since my accident maybe because they didn't find my burst fracture for 2 month's I am working since the 6 month of my injury but my employer is letting me ride a scooter and that really helps alot. I hope I can recover from the nerve ending pain but realize it may not happen. but phsically I am doing alot better do not have balance. and is really hard to pick up thing's from the floor also cannot get down on the floor on hand's and knee's is this something I should practice doing or just leave it at that?
Thank's
Duge

[Belle]

My husband was ASIA A at 24 hours. He was recently tested at almost one year post injury, and seems to have had a slight lowering of his injury level. Previously, he had only the first group of abs and now he has some (not full) voluntary contractions in the second row also. We probably would not have noticed except for all the recordkeeping by the PT staff [img]/forum/images/smilies/smile.gif[/img]. He did also has had some diffusion of sensation across the dividing line for skin sensation - at the time of the injury he frequently reported discomfort at the demarcation point, but now does not notice a sharp line like he had before. This was not significant in terms of lowering his level, but it does make him more comfortable, especially during spasms.

He noticed some tingling in one of his feet during his last accupuncture session a couple of months ago. We are going to 'test drive' an FES bike within the next month, I'm curious to see if that will also bring on some weak sensations.

We are only one year out, so I didn't answer the poll.


*************
AB wife of T8 complete para

[Wise Young]

Belle, thanks. This poll was indeed for people who are more than 3 years after injury. I apologize for the complexity of the poll questions because many people many not know their ASIA classification at 24 hours after injury and I had added the category of "complete". If we were to add all the ASIA A's and people who were told that they were "complete", nearly a third of the people with severe spinal cord injuries recovered additional function more than 3 years after injury. This is much more than most clinicians expect. By the way, there are not more people with "incomplete" (ASIA B or C) who indicate that they recovered more function 3 or more years after injury because most of them had most of their recovery within 3 years. Again, this is consistent with what most of us in the community know. Wise.

[fuentejps]

inc c4-5, yes i did gain recovery after 3 yrs definately

[Wise Young]

fuente, did you vote? Wise.

[sbdspray]

what's the use of flickers of recovery in the toes, and/or thighs? Still, after being a complete, the vital functions never recover substantially. This whole recovery is the norm thing is getting tiring, obviously anyone on this site did not recover enough to get out of a wheelchair for good. If you are diagnosed as a complete after the acute phase of your injury, later, in physical therapy, they almost always discourage and ignore the hope for further recovery

sherman brayton

[SydneyJo]

Originally posted by brayton:

what's the use of flickers of recovery in the toes, and/or thighs? Still, after being a complete, the vital functions never recover substantially. This whole recovery is the norm thing is getting tiring, obviously anyone on this site did not recover enough to get out of a wheelchair for good. If you are diagnosed as a complete after the acute phase of your injury, later, in physical therapy, they almost always discourage and ignore the hope for further recovery

sherman brayton

Shutup brayton. I am sick to death of you coming in here and crying. What the hell good are you to this community anyway with the negative attitude. Who do you think you are helping? NO ONE. Can't you keep the negative BS to yourself. Who do you think wants to hear it? NO ONE. I know, I know. Everyone deserves to voice their opinion but EVERYONE on here knows what yours is and I certainly wouldnt want to be an acute and come in here and read that. I know if this were 20 months ago and I read some of your posts, I would end up in a mental institute thinking that our life from this point on is hopeless.

[Wise Young]

sydneyjo, its okay. Let me try to answer Sherman as to why this kind of information is important.

1. The dogma is that recovery is limited to the first one or two years after injury. It is this kind of information that allows us to judge whether recovery is due to a treatment or not. For example, several clinical trials have shown some recovery that they claim is very unusual. This poll suggests that, least in this small sample set, as much as third of people with so-called ASIA A or "complete" loss of neurological function more than 2 segments below the injury level at 24 hours will get some sensation and motor recovery three or more years after injury. It may not that unusual.

2. It raises the question of the mechanism of such delayed recovery. Is it due to spontaneous regeneration? Remyelination? Why is this important? It is important for interpreting clinical trial data. I also think that it is important to know whether there is spontaneous regeneration (albeit very limited) or remyelination in chronic spinal cord injury that is returning function.

3. I have this theory that the spinal cord continually tries to regenerate for many years after injury. If true, this really changes our thinking about the possibility of therapies designed accelerating or maximizing spontaneous regeneration with therapies. Don't you think that it would change your thinking as well?

Wise.

[bruce]

Didn't reply to this poll when it was first posted as I wasn't over three years post. I'm now at about 3-1/2 years, and I have experienced recovery in the last six months. I was ASIA B at 24 hours.

I spent almost three months at the U of Florida doing locomotor training (I have a thread in Exercise about this). I went there in April walking with lofstrand crutches and a right AFO, and now walk with a cane and no AFO. By losing the AFO, I was able to get return in the muscles of my lower right leg. my dorsiflexion is much stronger and my ankle feels more stable. The peroneus muscles, which, before the training were non-functional, have started working as well. The overall muscle mass increase is very noticable.

The other thing I've noticed is that my lower body feels better. It's subjective, as My ASIA sensory score didn't change significantly, but I really think something is different. So I'll see where I go from here.

- Bruce

[b1zzfr74]

I am a c6/c7 injury. 24hrs after accident after lamectomy I had movement in one toe, no sensation to hot cold sharp or dull. After 6 months in sunnybrook hospital I walked out and continued my carreer in the Air Force and retired in 1972. I took a job as a gas company meter reader for the next 13 years, walking on average 10 miles daily.
From the date of my injury (1956 until well into the late 70's early 80's I continued to improve. During this time I can say that my condition did not hinder me in becoming an excellent curler, 5 pin bowler (228 average) and a fair tennis player. Although the body sensation did not improve and the bowel and bladder problems were there to a degree I still had a marvelous revovery until age 52, at which time my condition changed direction. I am now 68 years old(48 years post injury and can barely walk and very weak. They call this SCI and aging. Olly

olly

[woman from Europe]

Then you started to get worse 32 years post. That is excactly like me. But I have never been so good walking like you.

Why do the doctors know so little about it?

TH 12 incomplete 12-12-69.

[KDK513]

My husband was injured December 23, 1999. We were told his injury was complete at T4, his ASIA was A. Two days later he could feel the pinprick on his big toe, but that was all. As of 14 months ago his level had dropped to T7, ASIA B-. Yesterday his Doctor was shocked, not having seen him during the past 14 months to find his level is now T10, ASIA D. His doctor was very encouraged and believes his swimming 2-3 miles a week, nautilaus training and PT has contributed to this improvement. He wants him to step it up even more and walk as much as possible. I was wondering if the program Bruce participated in would be viable for my husband. We are very excited at his continued improvement.