Medical tourism and the Kunming Walking Program

[nrf]

I agree with your line of thinking about rehab.
Problem is that there is no effective therapy for chronic SCI and rehab is the only thing that sometimes can help, so people tend to stick to it beyond rational limits. I have seen people go totally broken to pay for rehab and, of course, they got no return at all, which could have been esily anticipated. That's not good, it's taking advantage of desperation.
What we need is a therapy that really works.

Paolo

The goal of Stem Cell Therapy is return of function. If no physical therapy is provided with the Cell therapy then return of function could go unnoticed for a long period of time. This would artificially skew Stem Cell results negatively. What I believe Dr.Young has done is taken his best educated guess at Cells, accompanying medicines and PT to achieve accurate results to his trial. Do you agree that this is the best approach today? If not what do you recommend?

[paolocipolla]

The goal of Stem Cell Therapy is return of function. If no physical therapy is provided with the Cell therapy then return of function could go unnoticed for a long period of time. This would artificially skew Stem Cell results negatively. What I believe Dr.Young has done is taken his best educated guess at Cells, accompanying medicines and PT to achieve accurate results to his trial. Do you agree that this is the best approach today? If not what do you recommend?

I was just saying that PT alone does not provide recovery in most cases of complete SCI. It is still good for many reasons we all know.
Then for people who partecipate to a clinical trial I think is likely that PT will be essential to maximize the effect of the therapy (assuming that the therapy works).
To make sure of that the trial should have a group that does not receive PT, or maybe PT should be just postponed in a group to see if the nerological recovery happens anyway. If that is the case rehab would still be needed to rebuild muscles etc.
Think for example that people in the stem cell inc trial have recovered some sensibility, but they didn't do any kind of "sensibility rehab" the recovery just happens. Could that happen the same way for motor functions with "the right therapy"? I don't know, maybe.

Paolo

[nrf]

I was just saying that PT alone does not provide recovery in most cases of complete SCI. It is still good for many reasons we all know.
Then for people who partecipate to a clinical trial I think is likely that PT will be essential to maximize the effect of the therapy (assuming that the therapy works).
To make sure of that the trial should have a group that does not receive PT, or maybe PT should be just postponed in a group to see if the nerological recovery happens anyway. If that is the case rehab would still be needed to rebuild muscles etc.
Think for example that people in the stem cell inc trial have recovered some sensibility, but they didn't do any kind of "sensibility rehab" the recovery just happens. Could that happen the same way for motor functions with "the right therapy"? I don't know, maybe.

Paolo

You're right, but another potentially important method may be to provide long term Extensive PT to a patient before Stem Cell Therapy. Then continue with the exact same PT after Stem Cell Therapy to make sure the cells are responsible for the return instead of the PT. The next hurdle is did the decompression surgery initiate return instead of the Cells? AY2012 is against any completes "paying" for treadmill therapy, here in the USA it's hard to get insurance coverage for any long term PT much less expensive treadmill sessions. In addition money is far from plentiful for the Stem Cells. I'm delighted and thankful to see complete SCI patients paying for locomotor therapy in Kungming and I feel they are assisting in the whole return of function attempt.

[m&msmom]

nrf your generosity is amazing!!

I have spent numerous hours reading the comments here but don't post often but after reading about all you have provided freely for others from your personal funds is astounding. How I wished we lived near you.
We have spent months looking for lokomotor training for my son near the university that he wishes to continue in order to complete his tax degree. We have finally settled on Brooks Rehab Neuro Recovery Center in Jacksonville.

My son is a t-12 and was initially classified as Asia A at the Shepherd Center. Because he could stand in a standing frame for an hour I begged to allow him to use the Lokomat there early on and was told no because insurance wouldn't pay. I said we would pay so he was allowed to use it two hours a week and participated in other physical exercises during this time. A few weeks later his classification changed to a "B". We spent another 3 months at Shepherd's Beyond Therapy where he did intensive core training and over ground locomotor training with therapist support. His most recent physiatrist at Shands says he is now a level "C" six months after his injury. He can now walk with a walker and AFOs for over 200' before tiring.
We will continue to pay for the locomotor training as long as we can afford it.
I am overwhelmed with your caring and generosity towards others. I am sure there will be many stars in your crown.

[rjg]

I have spent numerous hours reading the comments here but don't post often but after reading about all you have provided freely for others from your personal funds is astounding. How I wished we lived near you.
We have spent months looking for lokomotor training for my son near the university that he wishes to continue in order to complete his tax degree. We have finally settled on Brooks Rehab Neuro Recovery Center in Jacksonville.

My son is a t-12 and was initially classified as Asia A at the Shepherd Center. Because he could stand in a standing frame for an hour I begged to allow him to use the Lokomat there early on and was told no because insurance wouldn't pay. I said we would pay so he was allowed to use it two hours a week and participated in other physical exercises during this time. A few weeks later his classification changed to a "B". We spent another 3 months at Shepherd's Beyond Therapy where he did intensive core training and over ground locomotor training with therapist support. His most recent physiatrist at Shands says he is now a level "C" six months after his injury. He can now walk with a walker and AFOs for over 200' before tiring.
We will continue to pay for the locomotor training as long as we can afford it.
I am overwhelmed with your caring and generosity towards others. I am sure there will be many stars in your crown.

I'm not sure when your son was hurt. Or how severely. But moving from a complete injury to an incomplete is no big deal within the first few years. It's very common.

[mamadavid]

I'm not sure when your son was hurt. Or how severely. But moving from a complete injury to an incomplete is no big deal within the first few years. It's very common.

Yes, but is it or is it not more likely to happen with intensive physiotherapy?

[ay2012]

Yes, but is it or is it not more likely to happen with intensive physiotherapy?

That was my whole point. This hasn't been demonstrated, as far as I know, for the types of patients I'm talking about. It simply hasn't...

[Wise Young]

Honestly, I don't have all that much sympathy either for people who waste their money without doing a substantial inventory of the therapy offered and at the same time understand people making an informed decision to spend their money fully knowing how rare significant return is. I don't fault them for taking a calculated risk...
I just brought this one up because it has people involved in the ChinaSCINet trials seemingly offering a yet to be proven therapy in a private hospital for money. And when I go back and read the countless justifications for these trials, one was to try to discredit those offering experimental therapies for money. I hope the Kunming walking does provide benefits, even small ones, for chronics with severe injuries but to suggest it does so as of now I think is jumping the gun.

ay2012,

I am sorry but I disagree with you. Skepticism is good but you have gone beyond skepticism in your statements. If you don't know, please just say that you don't know. Please don't go the route of nihilism and call it snake oil or other derogatory terms. Not a single rehabilitation therapy that is being practiced today can be said to be effective based on double-blind placebo-controlled randomized trial data.

We don't know how much training is optimal for recovery of locomotor function but much history and experience suggest that intensive training is necessary for recovery of locomotor function. If a person with incomplete spinal cord injury doesn't engage in any locomotor training, that person is unlikely to recover walking compared to 90% of people who get either treadmill or overground locomotor training.

In the case of Ali Ingersoll, she just had her spinal cord decompressed and untethered. Ali and her family, on the advice of all their medical advisors and scientists, decided that she should go through a intensive course of locomotor training. I don't think that anybody has promised that she will recover walking after this training. On the other hand, they are promising to her that they will do their utmost to train her to walk again and she in turn has agreed to work very hard. In my opinion, this is not only ethical but medically appropriate to offer her intensive locomotor training. We can learn something important from Ali's experience.

In the United States and China, locomotor training is regarded as being useful adjunct therapy, particularly for people with incomplete spinal cord injury. Many insurance companies will pay for some amount of locomotor training even in people with "complete" spinal cord injury. I agree that we need to do clinical trials to ascertain whether such training will work in people with chronic complete spinal cord injury. On the other hand, if the therapy that she has received makes her more incomplete, this should justify the use of such therapies.

Ali is not in any ChinaSCINet clinical trial. She could not wait and, in my opinion, should not have waited to participate in and be randomized to untethering surgery, UCBMC transplants, or lithium. She had something pressing on her spinal cord and it needed to be removed urgently. The family and she believe that she would benefit from intensive walking training after the surgery. The doctors agreed to train her as best as they could. I don't think that this is jumping the gun or unethical. This is simply a very smart person and family utilizing their resources intelligently. I would make a similar decision, if I were Ali.

Wise.

[ay2012]

So Ali's case is perhaps a little more nuanced given she is having decompression surgery. Fine: I don't know. But does anyone know? Wise, I'm a bit surprised by you: if someone offering some injection of some stem cells were to say "listen, I'm not promising anything but give me $20,000 and lets try it out" would you say the same thing? Perhaps locomotor training/other types of intensive rehab don't pose the same safety issues and exercise in general is good (for both body and mind)... But for recovery? People aren't getting on a Lokomat to get their heart rate up and work up a sweat, they're doing it for neurological recovery.

[Wise Young]

So Ali's case is perhaps a little more nuanced given she is having decompression surgery. Fine: I don't know. But does anyone know? Wise, I'm a bit surprised by you: if someone offering some injection of some stem cells were to say "listen, I'm not promising anything but give me $20,000 and lets try it out" would you say the same thing? Perhaps locomotor training/other types of intensive rehab don't pose the same safety issues and exercise in general is good (for both body and mind)... But for recovery? People aren't getting on a Lokomat to get their heart rate up and work up a sweat, they're doing it for neurological recovery.

Thanks. What you said here is more reasonable.

There is a world of difference between somebody who advertises a falsehood to entice people to buy a service or product and somebody who says that they don't know whether a service will work but agrees to provide the service.

The evidence that locomotor training is beneficial is quite strong, as I have indicated, for people who have incomplete spinal cord injury. We are of course doing the clinical trials to see if training can help restore locomotion in people with chronic complete spinal cord injury who have received cell transplants.

Wise.

[Lyerly]

I'm not sure when your son was hurt. Or how severely. But moving from a complete injury to an incomplete is no big deal within the first few years. It's very common.

I thought I remember Wise saying only 20-30% or so convert from ASIA A to ASIA C??

[nrf]

So Ali's case is perhaps a little more nuanced given she is having decompression surgery. Fine: I don't know. But does anyone know? Wise, I'm a bit surprised by you: if someone offering some injection of some stem cells were to say "listen, I'm not promising anything but give me $20,000 and lets try it out" would you say the same thing? Perhaps locomotor training/other types of intensive rehab don't pose the same safety issues and exercise in general is good (for both body and mind)... But for recovery? People aren't getting on a Lokomat to get their heart rate up and work up a sweat, they're doing it for neurological recovery.

I can't speak for the Lokomat, but I can tell you people definitely treadmill train for cardiovascular purposes at least as much as for potential return of function. You should try a few good sessions before you profess yourself as knowledgeable in its lack of worth.

I think one of the areas you may be correct is that many facilities attempt to treadmill train with PTs who are themselves not physically capable of treadmill training. If you train for 2 minutes then take a five minute break( or look at the computer for 5 minutes) you remove most of the cardiovascular benefit for the client. We go for 5 minute laps with a 20 second trainer rotation. Some times we will do a 3 minute "sprint" going up to 6 miles an hour at the end of session, sometimes we do a slow speed step adaptation for the last 5 minutes. We are always surprised at how the trainers effort decreases on different people at different speeds. We also attempt to keep the clients mind and upper body involved as much as possible.

[KK11]

Physical therapy and locomotor training is benefical in almost every CNS disorder in general (stroke etc...) I repeat myself but a complete injury doesnt mean that all nerves are being damaged. The word complete dont describe the condition of the spinal cord. Complete describes the neurological status. We all know about the word Neuroplasticity.

[nrf]

I have spent numerous hours reading the comments here but don't post often but after reading about all you have provided freely for others from your personal funds is astounding. How I wished we lived near you.
We have spent months looking for lokomotor training for my son near the university that he wishes to continue in order to complete his tax degree. We have finally settled on Brooks Rehab Neuro Recovery Center in Jacksonville.

My son is a t-12 and was initially classified as Asia A at the Shepherd Center. Because he could stand in a standing frame for an hour I begged to allow him to use the Lokomat there early on and was told no because insurance wouldn't pay. I said we would pay so he was allowed to use it two hours a week and participated in other physical exercises during this time. A few weeks later his classification changed to a "B". We spent another 3 months at Shepherd's Beyond Therapy where he did intensive core training and over ground locomotor training with therapist support. His most recent physiatrist at Shands says he is now a level "C" six months after his injury. He can now walk with a walker and AFOs for over 200' before tiring.
We will continue to pay for the locomotor training as long as we can afford it.
I am overwhelmed with your caring and generosity towards others. I am sure there will be many stars in your crown.

M&msmom,

I think you have taken the best course for your son and have also had a little good fortune. I can personally guarantee you that your sons return would not have been as robust as it was(and is) without you going the extra step of Beyond Therapy. Early on we wanted to send our son to Beyond Therapy but were not allowed by Shepherd to have him do inpatient PT upstairs and Beyond Therapy at the same time. Shepherd wanted him to do a month of inpatient then a month or more of Beyond Therapy (this after 3 months at Magee in patient). We decided on Project Walk because of their train your trainer program. Your son is luck to have you for parents. We all do the best we can do, but all wish we could do more. Lets hope Dr.Young or Silver or Acorda or one of their peers hit one out of the park.

[c473s]

M&msmom,

I think you have taken the best course for your son and have also had a little good fortune. I can personally guarantee you that your sons return would not have been as robust as it was(and is) without you going the extra step of Beyond Therapy. Early on we wanted to send our son to Beyond Therapy but were not allowed by Shepherd to have him do inpatient PT upstairs and Beyond Therapy at the same time. Shepherd wanted him to do a month of inpatient then a month or more of Beyond Therapy (this after 3 months at Magee in patient). We decided on Project Walk because of their train your trainer program. Your son is luck to have you for parents. We all do the best we can do, but all wish we could do more. Lets hope Dr.Young or Silver or Acorda or one of their peers hit one out of the park.

Perhaps it was your insurance company because inpatient is therapy and the BT is a health and wellness program by definition and structure.