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

[Wise Young]

wise, sorry. i meant in my 6 months of rehab at rancho los amigos and my year in a "transitional living center", i saw ppl come in totally paralyzed from neck down and end up walking out. their injuries weren't "permanent" yet their recovery time was a few months.

i remember one guy in particular who came in totally paralyzed (rehab, dunno how long he was in hospital before). everybody talked about him, what a shame....good lookin guy just messin around with friends. he walked away 2-3 months later. then there was another engineer they asked me to talk to when he came in. same kind of story.

i am incomplete, asia b. my comment about "permanently injured" arises from so many ppl i have known and stories out there about recovery. so, perhaps i used the wrong adjective.

btw, i cannot answer your survey question as i have little idea what i was in first 24 hours. i do know i had my fingers. but somewhere in those first few days, i lost them. later, i lost an arm. but it came back. fingers didn't.

Cass,

There are occasional people who recover walking even from so-called "complete" spinal cord injury. John Ditunno and his colleagues once did a study of the conditions under which this occurs. They often occurred in situations where there may have been complicating conditions that interfered with a good neurological examination or a head injury. But, even with careful neurological examinations, especially since methylprednisolone started to be used, a few people with ASIA A classification recovered sufficient function to walk out of the hospital. Perhaps it was the patient population that I was dealing with at Bellevue Hospital but a couple of them were drug dealers.

In recent years, I believe that many of the doctors have extended the period of "complete" injury to 48-72 hours because they can do a better neurological examination on the patient at a later time. Very few people who were "complete" or ASIA A at 1-2 weeks after injury recovered sufficient function to walk out of the hospital. In my experience, that is quite rare. On the other hand, people who are incomplete, i.e. who have anal sensation or even sphincter contraction, often did recover substantially.

I have commented in the past that if we understood and could recreate why some people recover more than others, we would have the cure for spinal cord injury. But, that was a tongue-in-cheek comment. I believe that there is a threshold of about 8-10% of the spinal cord that is necessary and sufficient for locomotor recovery. Many people are right on the verge of that threshold. However, those who are far from the threshold do not recover as much.

Wise.

[Joey_SF]

This is off the poll topic -- but, how do I find good rehab center or PTs for my Dad, C3-C4, incomplete? Nothing below the nipple line, except toe wiggles (deemed as reflexive).

My Dad is currently at a Calif rehab center which merely does passive range of motion - within the half hour session, he's lucky to get 16 minutes. I've timed the sessions as little as 5 minutes.

Originally, his surgeon team had basically written a report claiming that my Dad is hopeless (and should choose to euthanize) and will never regain any function and won't get weaned from the vent. They claimed that the swelling had gone to his brain stem. But, this is not believable since his tongue works and his eyes are focused.

The rehab doc agreed with the hopeless condition -- tho in contrast to the ICU, he detected that my Dad had sensations under the right thigh and lower right buttock. The rehab center doesn't do locomotive or e-stim on patients who can't move.

After reading about repetitive motion, I tried to do it (I'm the one-legged bicycle) with my Dad -- with the time constraints, the majority of time was spent on the left leg and right leg respectively. Now, my Dad claims that he can feel his left buttock and lower left back, and on his lower right back.

The rehab doc says that the first set of sensations is usually the buttock area, but this doesn't mean much.

My Dad mentioned that he could occasionally feel the suppository. The sensations are like picking up intermittant radio stations -- so, it's in and out.

Please let me know - how did you find a good positive doctor? Or, what did others do to regain motion after experiencing the doctors and PTs who already deemed them as hopeless?

It's been 3.5 mos after his injury. My Dad is in his 70's -- much to my sadness, I note some rehabs won't accept seniors.

[cass]

wait a minute, doctors actually said to euthanize????

[Colin83]

That DOES seem kind of weird.

[Joey_SF]

The push to get my Dad to elect to self-euthanize was very painful to watch.

My Dad had hoped that he could recover (C3-C4, incomplete, though he knew it wasn't to be 100%) -- he wants to try, despite the doctors discouragement.

[bcsimpsons]

I was classified originally as ASIA B in Jan of '04. I am still an ASIA B 8 years later . The only thing that has changed for me is the increase in pain.

Becky

[cass]

The push to get my Dad to elect to self-euthanize was very painful to watch.

My Dad had hoped that he could recover (C3-C4, incomplete, though he knew it wasn't to be 100%) -- he wants to try, despite the doctors discouragement.

those docs are stupid. being in his 70's is no reason for this. your dad needs to try whether he recovers or not. this just so upsets me. just don't let them (docs) talk you into a nh. big mistake. been there, done that w/my dad. he died.

[Wise Young]

This is off the poll topic -- but, how do I find good rehab center or PTs for my Dad, C3-C4, incomplete? Nothing below the nipple line, except toe wiggles (deemed as reflexive).

My Dad is currently at a Calif rehab center which merely does passive range of motion - within the half hour session, he's lucky to get 16 minutes. I've timed the sessions as little as 5 minutes.

Originally, his surgeon team had basically written a report claiming that my Dad is hopeless (and should choose to euthanize) and will never regain any function and won't get weaned from the vent. They claimed that the swelling had gone to his brain stem. But, this is not believable since his tongue works and his eyes are focused.

The rehab doc agreed with the hopeless condition -- tho in contrast to the ICU, he detected that my Dad had sensations under the right thigh and lower right buttock. The rehab center doesn't do locomotive or e-stim on patients who can't move.

After reading about repetitive motion, I tried to do it (I'm the one-legged bicycle) with my Dad -- with the time constraints, the majority of time was spent on the left leg and right leg respectively. Now, my Dad claims that he can feel his left buttock and lower left back, and on his lower right back.

The rehab doc says that the first set of sensations is usually the buttock area, but this doesn't mean much.

My Dad mentioned that he could occasionally feel the suppository. The sensations are like picking up intermittant radio stations -- so, it's in and out.

Please let me know - how did you find a good positive doctor? Or, what did others do to regain motion after experiencing the doctors and PTs who already deemed them as hopeless?

It's been 3.5 mos after his injury. My Dad is in his 70's -- much to my sadness, I note some rehabs won't accept seniors.

Joey_SF,

I am shocked. I don't know what rehabilitation center he is at but, in my opinion, no doctor should be suggesting to or pushing a patient in his 70's to consider suicide so early after spinal cord injury. This is not only medically and ethically inappropriate but it is ignorant. I agree that he should move to another place with a more positive attitude towards spinal cord injury.

You say that he is C3/4 but has sensation at his nipples. This suggests that he has a T4 sensory level. If he has anal sensation, he is ASIA B. Recovery takes a year or more to reach a plateau. Your father is only 4 months after injury and therefore has a substantial amount of recovery in front of him. He may recover much more, if not to the point of walking but at least to a life with some independence.

If a move is not possible, you should get the hospital to focus on solving the following issues. First, if he has not been weaned already, they need to get him off the respirator. Second, if he is not yet speaking because of the tracheostomy, they need to get him to do so. Third, he needs to be put on a tilt table and progressively elevated to vertical. Fourth, they should get a power chair, get him in the chair, and teach him how to operate it. Fifth, if they have not, they should be putting in a suprapubic catheter and developing a plan for his bladder care. Incidentally, all of the above was done for Christopher Reeve and there is no reason why they cannot do this for your father.

Finally, I don't know what his home situation is like but the family needs to start planning to get him out of the hospital. There is so much to do.

Wise.

[Joey_SF]

Thank you for the encouraging words.

1) Breathing

Shortly after my Dad fell, he could speak and breathe. After the operation, he was on the vent. He has never been examined by a Pulmonologist. However, a couple of weeks ago, the rehab doc did an ultrasound and said that my Dad's left lung was not moving, but his right lung was moving at about 25%. He said that even if the left lung recovers, the astrophy would make it unlikely that my Dad would be able to breathe on his own.

However, I have a bit of hope after reading others' experiences regarding 6 or more months later re vent weaning.

Any exercises which can be done in the meanwhile? Any other tests which should be run?

2) Pulmonary Specialist

I spoke w/a pulmonologist who is out-of-state. He said that I should have a pulmonologist examine my Dad.

Is it common to request this exam by a pulmonologist?

Due to insurance reasons, my Dad has just moved to a subacute - they claim that they don't offer cough assist. The respiratory and internist seem upset that I should make this request -- and are also a bit peeved that I ask that a pulmonologist examine my Dad.

My Dad feels that he needs the cough assist -- he was given this at the ICU and the rehab center (I had to insist in the latter because though they gave this to others with similar injuries, they did not give it to my Dad). The out-of-state pulmonologist says that any pulmonologist would confirm the need for a cough assist.


3) Positive Signs and Sensations

A move is difficult at this point -- but I'll try. How do we find a positive place?

According to the rehab doc and the PT, "light touch" is the important measure of improvement. When the rehab doc did the initial exam and a 2ndary cursory exam, my Dad could feel his touch more than he could feel the PT's touch. In the final exam, the PT's touch was seemingly featherweight (I could barely feel it) and additionally, his sensations were "iffy." Sadly, the final report states 'no change.'

Is it true about the light touch? I remember that in the ICU, my Dad couldn't really feel the outer side (dorsal?) of his right shoulder, but now he can -- so, I hope the "in-and-out" feelings will become permanent.

I truly believe that in my Dad's case, the exercising helped to restore the sensations.

Sorry this has strayed from the topic.

Any feedback would be appreciated.