Medical tourism and the Kunming Walking Program

[ay2012]

Stumbled across this blog, seemingly from a young, American woman who is undergoing some type of decompression surgery with the intention of starting up on the Kunming Walking Program at the private hospital of Dr. Zhu Hui:
http://chinaquaddiaries.org/
Dr. Young I know these doctors are responsible for their own actions (although some of them are associated with the ChinaSCINet trials) and they don't seem to be offering UCBMC injection as a treatment... But isn't it a bit premature to be charging complete, chronic SCI (it seems) to do a walking program? I guess detethering/decompression could be justified on its own... But as far as I know there is not yet any evidence that walking programs for these types of patients leads to functional recovery. I suppose this only makes you more eager to get the result of the trial analyzed and published... Because I know one of the main reasons for the trial was to discredit groups that charged for unproven therapies.

[Wise Young]

ay2012,

I know this young woman and the group that did the surgery and is providing the locomotor training. She had decompressive and untethering surgery, which is a standard surgical procedure when something is compressing the spinal cord. To my knowledge, she did not receive any experimental cell transplant. There is evidence that locomotor training does improve posture and walking, particularly in incomplete patients. There is some controversy how much improvement occurs and whether it occurs in patients with complete spinal cord injury. Nevertheless, many rehabilitation facilities charge patients for walking programs in the United States.

The locomotor training program at this hospital is the best in China and possibly in the world. This group has provided intensive locomotor training to thousands of people with spinal cord injury. This is approved therapy in China. After reviewing many programs, including the best available in the United States, the family decided to have the surgery and the locomotor training in this hospital. She had a large arachnoid cyst compressing her spinal cord, causing severe neuropathic pain as well as ascending loss of function. The operation was carried out by a neurosurgeon, who is more experienced with untethering and decompressive surgery than any other surgeon in the world (>1000 cases).

Wise.

Stumbled across this blog, seemingly from a young, American woman who is undergoing some type of decompression surgery with the intention of starting up on the Kunming Walking Program at the private hospital of Dr. Zhu Hui:
http://chinaquaddiaries.org/
Dr. Young I know these doctors are responsible for their own actions (although some of them are associated with the ChinaSCINet trials) and they don't seem to be offering UCBMC injection as a treatment... But isn't it a bit premature to be charging complete, chronic SCI (it seems) to do a walking program? I guess detethering/decompression could be justified on its own... But as far as I know there is not yet any evidence that walking programs for these types of patients leads to functional recovery. I suppose this only makes you more eager to get the result of the trial analyzed and published... Because I know one of the main reasons for the trial was to discredit groups that charged for unproven therapies.

[ay2012]

ay2012,

I know this young woman and the group that did the surgery and is providing the locomotor training. She had decompressive and untethering surgery, which is a standard surgical procedure when something is compressing the spinal cord. To my knowledge, she did not receive any experimental cell transplant. There is evidence that locomotor training does improve posture and walking, particularly in incomplete patients. There is some controversy how much improvement occurs and whether it occurs in patients with complete spinal cord injury. Nevertheless, many rehabilitation facilities charge patients for walking programs in the United States.

The locomotor training program at this hospital is the best in China and possibly in the world. This group has provided intensive locomotor training to thousands of people with spinal cord injury. This is approved therapy in China. After reviewing many programs, including the best available in the United States, the family decided to have the surgery and the locomotor training in this hospital. She had a large arachnoid cyst compressing her spinal cord, causing severe neuropathic pain as well as ascending loss of function. The operation was carried out by a neurosurgeon, who is more experienced with untethering and decompressive surgery than any other surgeon in the world (>1000 cases).

Wise.

Thanks for the additional information... I'm not sure how complete this young woman is but she makes reference to another patient, apparently complete, undergoing the walking training. I know that rehab centers in the US also charge patients with these types of injuries for walking training and I think it is in these cases equally unethical and a waste of time.
Of course, people can believe whatever they want to and there are no shortage of willfully ignorant consumers in addition to snake oil salesmen to facilitate this exchange. And I know rehab can help a lot of people regain significant function... But I have to say I find the messaging of some rehab groups to be right on the border of misleading if they suggest anything but the smallest of likelihoods in recovery of function for those of us with the severest of injuries. I don't think anyone should pay money to have the odds of being a Pat Rummersfield.

[Jim]

If someone with a complete injury wants to try intensive physical training who are you to say they shouldn't? They should just sit back and do nothing, think I heard that 30 years ago.

[ay2012]

If someone with a complete injury wants to try intensive physical training who are you to say they shouldn't? They should just sit back and do nothing, think I heard that 30 years ago.

Bullshit. Replace the word intensive physical therapy with any number of debunked therapies that have been posted here and you would say the same thing (and have in the past).
Before you jump down my throat, note that I am talking about a) those with hope for recovery of function and b) those with very very severe (complete) injury.
Of course, exercise is generally good for everyone for reasons other than trying to get back significant return of function.

[Jim]

You said "complete" individuals shouldn't undergo walking training- walking training for someone with a complete injury is waste of time.

That statement is wrong because many patients that have been through the Kunming walking program have gone from complete to incomplete. You should not be telling people with complete injuries there is no reason to try and walk.

[ay2012]

You said "complete" individuals shouldn't undergo walking training- walking training for someone with a complete injury is waste of time.

That statement is wrong because many patients that have been through the Kunming walking program have gone from complete to incomplete. You should not be telling people with complete injuries there is no reason to try and walk.

Oh really? Where has this data been published? Until it is, Dr. Young himself would say that people should not be charged for experimental therapies. I can't see why you would say any different about this one, except the fact that its a component of the trials you are working for.
*I said in my first post that I was talking about chronic patients as well but did not reinforce this in my reply to you. Complete, chronic patients hoping for return of function.

[rjg]

At least she knows what to expect with Kunming. The available information suggests that the walking is not guaranteed and those who do walk do so in a way that has few practical applications outside of the hospital. If she and whoever is funding her think that's a worthwhile use of money, time, and energy, then god bless her. I would have an easier time getting worked up about this if they were touting anything more than meager functional returns.

[Wise Young]

Oh really? Where has this data been published? Until it is, Dr. Young himself would say that people should not be charged for experimental therapies. I can't see why you would say any different about this one, except the fact that its a component of the trials you are working for.
*I said in my first post that I was talking about chronic patients as well but did not reinforce this in my reply to you. Complete, chronic patients hoping for return of function.

ay2012,

I have said that it is "controversial" whether "complete" spinal cord injury patients will respond to intensive locomotor training. "Controversial" does not mean that there is evidence that intensive locomotor training does not restore function. It just means that there is not enough evidence or the evidence is conflicting. On the other hand, there is quite convincing evidence that intensive locomotor training can restore unassisted locomotion in people with incomplete spinal cord injury. Published over 20 years ago, Wernig and colleagues have reported that treadmill locomotion with body weight support can improve walking in persons with severe spinal cord injuries. Over 70% of patients with "incomplete" spinal cord injury who have never walked after spinal cord injury can recover unassisted walking as late as 10 years after injury.

One of the reasons why "intensive" locomotor training is controversial is because what some people call "intensive" is regarded as insufficient by others. In the United States, most rehabilitation doctors think that 3 hours a day, 3 days a week, for 3 months is "intensive". There is also quite a bit of disagreement concerning whether the training should be done on treadmills with weight support or the training should emphasize overground walking. Another reason is the criteria that people have used for "improvement". Almost everybody who works in the field believes that people who engage in intensive locomotor training are healthier, have lower incidences of urinary tract infections and decubiti, and have less spasticity.

In 2012, Mehrholz, et al. did a Cochrane study of the benefits of locomotor training and found no statistically significant superior effect of locomotor training compared to any other kind of physical rehabilitation. Body-weight supported locomotor training did not improve the walking velocity. Most of the studies they reviewed looked at training the patients for several hours a week. They concluded that the current available evidence is not sufficient to allow a definite conclusion concerning the efficacy of locomotor training. However, if you talk to investigators at the Neurorecovery Network [5-6], they will tell you that they have seen noticeable improvements in posture and walking reflexes, even in people with complete spinal cord injuries. Likewise, I have seen individuals with chronic complete spinal cord injuries who have progressed from non-walking to assisted walking with intensive locomotor training in Kunming.

It is not yet time to dismiss locomotor training or to call it "snake oil".

Wise.

1. Wernig A, Nanassy A and Muller S (1998). Maintenance of locomotor abilities following Laufband (treadmill) therapy in para- and tetraplegic persons: follow-up studies. Spinal Cord 36: 744-9. Department of Physiology, University of Bonn, Germany. Recent reports indicate that walking capabilities in spinal cord damaged persons significantly improve--as compared to conventional rehabilitation therapy--after intensive training of aided (Laufband) treadmill-stepping. In the present report, follow up investigations on two collectives of spinal cord injured (sci) persons are described who had undergone (Laufband) treadmill therapy either during a period of renewed rehabilitation months or years after spinal cord injury (35 chronic patients) or during their first postacute rehabilitation period (41 acute patients). Among the initially chronic patients, 20 from 25 still wheelchair-bound before the onset of (Laufband) treadmill therapy, ie not capable of raising from the wheelchair and walking without help by other persons, became independent walkers after therapy. Assessment of voluntary muscle activity in resting position before and after the period of therapy had shown only small increases in most patients, indicating the involvement of motor automatisms and better utilisation of remaining muscle function during walking. Follow-up assessments performed 6 months to 6 1/2 years after discharge from the hospital revealed that the walking capabilities achieved by (Laufband) treadmill therapy in the 35 initially chronic patients were maintained in 31 persons, in three they had further improved, in only one it was reduced. These results indicate that the improvements achieved under clinical conditions can be maintained in every day life under domestic surroundings. From 41 initially acute patients, 15 had further improved and none had reduced his walking capability 6 months to 6 years after discharge from the hospital.

2. Wernig A, Muller S, Nanassy A and Cagol E (1995). Laufband therapy based on 'rules of spinal locomotion' is effective in spinal cord injured persons. Eur J Neurosci 7: 823-9. Department of Physiology, University of Bonn, Germany. Rehabilitation of locomotion in spinal cord (s.c.) injured patients is unsatisfactory. Here we report the effects of a novel 'Laufband (LB; treadmill) therapy' based on 'rules of spinal locomotion' derived from lower vertebrates. Eighty-nine incompletely paralysed (44 chronic and 45 acute) para- and tetraplegics underwent this therapy, then were compared with 64 patients (24 chronic and 40 acute) treated conventionally. The programme consisted of daily upright walking on a motor driven LB initially with body weight support (BWS) provided by a harness and assisted limb movements by the therapists when necessary. Forty-four chronic patients with different degrees of paralysis undertook the programme for 3-20 weeks (median = 10.5), 0.5-18 years after s.c. damage. At the onset of LB therapy 33/44 patients were wheelchair-bound (no standing and/or walking without help by others) whereas at the end of therapy 25 patients (76%) had learned to walk independently, 7 patients with help [corrected]. Only 1 subject did not improve. It was striking that voluntary muscle activity in the resting position was still low in several patients who had gained walking capability. Eleven patients who could already walk before LB therapy improved in speed and endurance. Of the 44 patients, six were capable of staircase walking before LB therapy compared with 34 afterwards. In order to validate the apparent superiority of LB therapy two types of comparisons were performed. In a 'temporal' control 12 spastic paretic patients, still wheelchair-bound after the period of postacute conventional therapy, performed LB immediately thereafter. After completion of LB therapy nine of these patients had learned to walk without help from others.(ABSTRACT TRUNCATED AT 250 WORDS).

3. Wernig A and Muller S (1992). Laufband locomotion with body weight support improved walking in persons with severe spinal cord injuries. Paraplegia 30: 229-38. Department of Physiology, University of Bonn, FRG. After low transection of the spinal cord mammalian quadrupeds can be trained to walk on a driven surface indicating that coordinating neuronal circuits persist in the spinal cord segments caudal to the lesion. We trained 8 persons with incomplete spinal cord lesion on a Laufband (driven treadmill) for 1 1/2 to 7 months (5 days a week, 30-60 minutes daily) starting 5 to 20 months after injury and found significant improvement in the utilisation of the paralysed limbs during locomotion. Locomotion is described in one additional patient who had trained independently on parallel bars for several years. Five patients had complete functional paralysis in one lower limb when tested in a resting position. In EMG recordings voluntary activity (ie activity induced upon command) was absent or residual in the main flexor and extensor muscles of this limb. In contrast, during locomotion flexion and extension movements were performed and phasic EMG activity was present. In these 5 patients, and in all others reported here, skin sensibility and proprioception are preserved to different degrees in all limbs. In the course of locomotive training of 4 severely paralysed patients the initially habituating flexion reflexes could be entrained in the paralysed limbs as was the case for knee extension during stance. Subsequently, initial body weight support (BWS) of 40% could be reduced to 0%. The distance covered on the Laufband (0-104 m in the first week) increased significantly (200-410 m) in the last week of training as did speed (0-10 to 14-23 m/min). More importantly, this training subsequently allowed patients to walk on a static surface for 100 to 200 meters while voluntary activity remained absent in the paralysed limb when tested at rest. Similar progress was achieved in the 4 less severely paralysed patients. The one patient who had trained independently on parallel bars for several years is described walking on a static surface for 40 meters with the help of a walker, though he had one completely and one near completely paralysed lower limb. It appears that bipedal stepping with consequent knee extension and stabilisation can be taught after unilateral complete or near complete loss of voluntary activity, suggesting the manifestation of complex reflex motor patterns at the spinal level.

4. Mehrholz J, Kugler J and Pohl M (2012). Locomotor training for walking after spinal cord injury. Cochrane database of systematic reviews 11: CD006676. Head, Insitute of Science, Private European Medical Academy of the Klinik Bavaria Kreischa, Kreischa, Germany. BACKGROUND: A traumatic spinal cord injury (SCI) is a lesion of neural elements of the spinal cord that can result in any degree of sensory and motor deficit, autonomic or bowel dysfunction. Improvement of locomotor function is one of the primary goals for people with SCI. Locomotor training for walking is therefore used in rehabilitation after SCI and might help to improve a person's ability to walk. However, a systematic review of the evidence is required to assess the effects and acceptability of locomotor training after SCI. OBJECTIVES: To assess the effects of locomotor training on improvement in walking for people with traumatic SCI. SEARCH METHODS: We searched the Cochrane Injuries Group's Specialised Register (searched November 2011); the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library 2011, Issue 4); MEDLINE (Ovid) (1966 to November 2011); EMBASE (Ovid) (1980 to November 2011); CINAHL (1982 to November 2011); AMED (Allied and Complementary Medicine Database) (1985 to November 2011); SPORTDiscus (1949 to November 2011); PEDro (the Physiotherapy Evidence database) (searched November 2011); COMPENDEX (engineering databases) (1972 to November 2011); and INSPEC (1969 to November 2011). We also searched the online trials databases Current Controlled Trials (www.controlled-trials.com/isrctn) and Clinical Trials (www.clinicaltrials.gov). We handsearched relevant conference proceedings, checked reference lists of relevant published papers and contacted study authors in an effort to identify published, unpublished and ongoing trials. SELECTION CRITERIA: We included randomised controlled trials (RCTs) involving people with SCI that compared locomotor training to a control of any other exercise or no treatment. DATA COLLECTION AND ANALYSIS: Two review authors independently selected trials for inclusion, assessed trial quality and extracted data. The primary outcomes were the speed of walking and walking capacity at final follow-up. MAIN RESULTS: Five RCTs involving 309 people are included in this review. Overall, the results were inconclusive. There was no statistically significant superior effect of any locomotor training approach on walking function after SCI compared with any other kind of physical rehabilitation. The use of bodyweight supported treadmill training as locomotor training for people after SCI did not significantly increase walking velocity (0.03 m/sec with a 95% confidence interval (CI) -0.05 to 0.11; P = 0.52; I(2) = 22%) nor did it increase walking capacity (-1.3 metres (95% CI -41 to 40); P = 0.95; I(2) = 62%). However, in one study involving 74 people the group receiving robotic-assisted locomotor training had reduced walking capacity compared with people receiving any other intervention, a finding which needs further investigation. In all five studies there were no differences in adverse events or drop-outs between study groups. AUTHORS' CONCLUSIONS: There is insufficient evidence from RCTs to conclude that any one locomotor training strategy improves walking function more than another for people with SCI. The effects especially of robotic-assisted locomotor training are not clear, therefore research in the form of large RCTs, particularly for robotic training, is needed. Specific questions about which type of locomotor training might be most effective in improving walking function for people with SCI need to be explored.

5. Harkema SJ, Hillyer J, Schmidt-Read M, Ardolino E, Sisto SA and Behrman AL (2012). Locomotor training: as a treatment of spinal cord injury and in the progression of neurologic rehabilitation. Archives of physical medicine and rehabilitation 93: 1588-97. Department of Neurological Surgery, Kentucky Spinal Cord Research Center, University of Louisville, Louisville, KY; Frazier Rehab Institute, Louisville, KY. Harkema SJ, Hillyer J, Schmidt-Read M, Ardolino E, Sisto SA, Behrman AL. Locomotor training: as a treatment of spinal cord injury and in the progression of neurologic rehabilitation. Scientists, clinicians, administrators, individuals with spinal cord injury (SCI), and caregivers seek a common goal: to improve the outlook and general expectations of the adults and children living with neurologic injury. Important strides have already been accomplished; in fact, some have labeled the changes in neurologic rehabilitation a "paradigm shift." Not only do we recognize the potential of the damaged nervous system, but we also see that "recovery" can and should be valued and defined broadly. Quality-of-life measures and the individual's sense of accomplishment and well-being are now considered important factors. The ongoing challenge from research to clinical translation is the fine line between scientific uncertainty (ie, the tenet that nothing is ever proven) and the necessary burden of proof required by the clinical community. We review the current state of a specific SCI rehabilitation intervention (locomotor training), which has been shown to be efficacious although thoroughly debated, and summarize the findings from a multicenter collaboration, the Christopher and Dana Reeve Foundation's NeuroRecovery Network.

6. Harkema S, Behrman A and Barbeau H (2012). Evidence-based therapy for recovery of function after spinal cord injury. Handbook of clinical neurology / edited by P.J. Vinken and G.W. Bruyn 109: 259-74. Department of Neurological Surgery, University of Louisville; Frazier Rehab Institute and NeuroRecovery Network, Louisville, KY, USA. Electronic address: Susan.harkema@jhsmh.org. Physical rehabilitation for individuals coping with neurologicaql deficits is evolving in response to a paradigm shift in thinking about the injured nervous system and using evidence as a basis for clinical decisions. Functional recovery from paralysis was generally believed to be nearly impossible, based on traditional expert opinion, and the priority was to develop compensation strategies to achieve functional goals in the home and community. Research, which began in animal models of neurological insult and is currently being translated to the clinic, has challenged these assumptions. The nervous system, whether intact or injured, has enormous potential for adaptation and modification, which can be harnessed to facilitate recovery. In this chapter we will briefly outline the history of physical rehabilitation as it concerns the development of strategies aimed at compensation, rather than functional recovery. Then we will discuss how new activity-based therapies are being developed, based on evidence from basic science and clinical evidence. One of these activity-based therapies is locomotor training, a program which relies on the intrinsic, automatic, control of locomotion by "lower" neural centers. A brief description of the program, including the four foundational principles, will be followed by an introduction to the use of robotics in these programs. Finally, we will discuss a second activity-based therapy, functional electrical stimulation (FES), and the future of physical rehabilitation for spinal cord injury and other neurological disorders.

Wise.

[ay2012]

At least she knows what to expect with Kunming. The available information suggests that the walking is not guaranteed and those who do walk do so in a way that has few practical applications outside of the hospital. If she and whoever is funding her think that's a worthwhile use of money, time, and energy, then god bless her. I would have an easier time getting worked up about this if they were touting anything more than meager functional returns.

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]

It is not yet time to dismiss locomotor training or to call it "snake oil".

Would you not agree that it is also not yet time to charge people for it (in the context of patients I described earlier)?

[nrf]

Would you not agree that it is also not yet time to charge people for it (in the context of patients I described earlier)?

Ay2012,

My ASIA A complete C5 son treadmill\locomotor trains 4 to 10 hours every week. He is far from walking but is initiating his forward leg movement on some days after over 4 years. His bowel and bladder program has had zero issues his bone density has gone from poor to fair. His clonus is almost non-existant and his spasms are substantially reduced on days he lokomotors. If and when somebody comes up with a medical breakthrough he will be as ready as he can be. The only reason why we don't loko more is because we wear his skin thin at knees and ankles. The only medicine my son takes is Ditropan 5mgs twice daily.

You are way off base giving advice on what therapy completes should get. We have weighed the benefits with the detriments and have decided that our son is worth a lot more than the money we would save by listening to people like you. I can tell you from experience that treadmill lokomotor training helps in many more ways than just walking and it should become normal permanent therapy for nearly all SCI therapy.

[ay2012]

Ay2012,

My ASIA A complete C5 son treadmill\locomotor trains 4 to 10 hours every week. He is far from walking but is initiating his forward leg movement on some days after over 4 years. His bowel and bladder program has had zero issues his bone density has gone from poor to fair. His clonus is almost non-existant and his spasms are substantially reduced on days he lokomotors. If and when somebody comes up with a medical breakthrough he will be as ready as he can be. The only reason why we don't loko more is because we wear his skin thin at knees and ankles. The only medicine my son takes is Ditropan 5mgs twice daily.

You are way off base giving advice on what therapy completes should get. We have weighed the benefits with the detriments and have decided that our son is worth a lot more than the money we would save by listening to people like you. I can tell you from experience that treadmill lokomotor training helps in many more ways than just walking and it should become normal permanent therapy for nearly all SCI therapy.

Nrf,
I, like your son, have a complete injury. I don't mean to say your son isn't worth the money. I'm glad he has gotten many of his complications in order as a result of therapy. I'm sure you're proud as hell to see him work his ass off for improved health.
You know what helps my spasms? General physical exertion, for example hand biking and basketball. You know what would likely help with bone density as much a locomotor training? Standing in a standing frame. Obviously it's great he's initiating forward leg movement but if he doesn't continually improve I imagine you might be swayed by a cost benefit analysis (both cost in terms of money and in terms of skin issues, for paras those who "walk" in leg braces have to watch out for wear and tear on shoulders,etc.) sooner or later.
My point is: I don't know of any controlled, large N studies of the benefits of intensive locomotor training for complete chronic patients RELATIVE to other types of physical exercise. Locomotor training like you describe is either very labour intensive (in the case of Kunming) or relies on an extremely expensive technology (Lokomat). People be getting paid for that. I just wonder if your son would be better served by something else. And I don't think we should have to guess on anecdotal evidence (what I experience, what your son experienced). If we applied the standard of rigor for other experimental therapies to this case of locomotor training for the types of patients I described (chronic, complete) there isn't (or at least I haven't seen- if I'm wrong and someone can point me to it I'd be grateful) substantial benefit relative to other physical exercise that your son maybe able to do on this own or with a lot less (expensive) help.

[ay2012]

Ehhhh nevermind. I just read some of your posts on politics here and you're a fucking idiot. I don't imagine you'll respond well to reason. Do hope your son continues to get better tho...

[nrf]

Ehhhh nevermind. I just read some of your posts on politics here and you're a fucking idiot. I don't imagine you'll respond well to reason. Do hope your son continues to get better tho...

Never mind I'm a fucking idiot? You who have never treadmill trained have all the answers? I think you might want to look in the mirror because the hair around that big brown eye staring back at you isn't eyelashes. Your advice is as bad as your manners are. You keep following your own advice though, I want to make sure my son and other people who are trying to help themselves never wind up behind the likes of you.