10 replies to this topic

[ctom3]

Has anyone ever heard of a Dr. Kao? He performs surgery to help with SCI in Equador. My husband has been injured for about 6 months, his level of injury is T11 (asia A complete). My husband is thinking about traveling to Equador for this surgery and I'm scared sick.

Any advice?

[Trinity]

Is this stem cell surgery?

[ctom3]

trinity, on Feb 8 2009, 12:49 PM, said:

Is this stem cell surgery?

From what I've read, he takes nerves from the calf and surgically places then in the injured area.

[edlee]

Please don't take this the wrong way,, but


ARE YOU SOME KIND OF IDIOT???????


These so-called "doctors" have all the answers,,,, to SCI,,, to cancer,,,,to any question or condition that can make them a buck,,and the thought that some desperate fool can be talked into parting with their money, will bring them swarming out of the woodwork.

Even if this guy was on the level,,, and was having even a limited amount of success with some procedure,,,, don't you think that someone in a less "third world" location would start doing it , too?????

Sorry,,,,,, maybe I shouldn't try to disuade you,,,,, maybe if you go ahead with it,,, then come back, here, and tell us about your success,, we will all start studying spanish,,,, or is it portuguese that they speak, there???

Whatever happens,, be sure to tell us,,,,, seems that the few others that have taken similar routes,, never come back to tell us about their outcomes,,, I guess they got busy....

We are fortunate enough to have medical care, here,, equal to any in the world,,,, but I guess the grass is always greener.... in Equador....
ed

[percepied]

This doctor has some notoriety in the world of SCI neurosurgery. The concept behind his surgical technique is to reroute the damaged spinal bundle with a PNS bundle much in the same way someone might use clips and a wire to bypass a damaged electrical circuit. Problem is this approach was disproved almost from the beginning of SCI repair techniques. The issue is not just with the nervous system connectivity and the retraining of a PNS bundle but with the rejection of the bypass by the body in a fashion similiar to the original injury. Perhaps someday this technique will be revisited but currently it is as much deception as medicine.

[Slowlegs]

ctom3, on Feb 8 2009, 05:51 PM, said:

trinity, on Feb 8 2009, 12:49 PM, said:

Is this stem cell surgery?

From what I've read, he takes nerves from the calf and surgically places then in the injured area.

At first I thought you meant take nerves from a calf, not the calf. I had a look and found a few websites about it. Apparently a guy in China also does it. Looks like it may be used to possibly restore some (not all) of the function, I am sure they have been using these techniques for other than SCI but may bemistaken. Having been a victim of a quack who could have ripped me off even more than he did at minimum or killed me at worst I advise you to be careful. Some of the Quacks out there sound so much better to those of us who are eager for a cure and that is what they prey on. The spinal cord is a very fragile and complex piece of equipment. I don't think you can just stick it all together and expect it to just heal itself. Just ask anyone who has ever accidentally cut through a main trunk fibre optic cable. They don't just repair themselves.

It isn't stem cell surgery as they are attempting to restore some function by using the patients own nerves, not those of someone else.

Edited by Slowlegs, 27 April 2009 - 08:13 AM.

[Jax]

Try Lisbon, Portugal. Look at the report from Dr. Carlos Lima regarding Olfactory Mucosa Autograft. (That's the shorter version. There is a link to the full version in the SCI Cure and Treatment threads.) Check in the SCI Cure and Treatment Section for a WHOLE LOT of info. The stemcellblogger and I and others have posted quite a bit of information regarding the RSCI. I am awaiting med records so I can forward them to the RSCI and see about getting into one of the several SCI treatment centers around the world. I have met a couple of people who have gone to Russia to have Autologous Stem Cell Transplantation. It's another option. Both of the people I have met have had some good returns, particularly in bowel/bladder function. I know for some, walking is the only way they will feel they have gained anything, and I know that is the eventual goal, but whatever surgery a person has for SCI will take years of additional physical therapy and hard work. Just know that whatever he decides, there is always going to be a WHOLE LOT MORE to the treatment than just a surgery in order to see the most gains.

[Jax]

edlee, on Feb 8 2009, 02:35 PM, said:

Please don't take this the wrong way,, but


ARE YOU SOME KIND OF IDIOT???????


These so-called "doctors" have all the answers,,,, to SCI,,, to cancer,,,,to any question or condition that can make them a buck,,and the thought that some desperate fool can be talked into parting with their money, will bring them swarming out of the woodwork.

Even if this guy was on the level,,, and was having even a limited amount of success with some procedure,,,, don't you think that someone in a less "third world" location would start doing it , too?????

Sorry,,,,,, maybe I shouldn't try to disuade you,,,,, maybe if you go ahead with it,,, then come back, here, and tell us about your success,, we will all start studying spanish,,,, or is it portuguese that they speak, there???

Whatever happens,, be sure to tell us,,,,, seems that the few others that have taken similar routes,, never come back to tell us about their outcomes,,, I guess they got busy....

We are fortunate enough to have medical care, here,, equal to any in the world,,,, but I guess the grass is always greener.... in Equador....
ed

ed, there is a successful clinic in Portugal, Russia, and one in Ecuador (which is run by an American company by the way!), among other places. If you check the Cure and Treatment threads, and look at the reports from Dr Carlos Lima (and lots of other info), you will see that the US is WAY BEHIND other countries. Hell, the FDA says that adult autologous stem cells are a drug that can be regulated and sold by pharmaceutical companies. That means that Pfizer can harvest your stem cells to sell to someone else, but you can't have a doctor transplant them into your own spinal cord to treat your SCI unless you purchase them from a pharmaceutical company. We can't get the procedures that work here unless greedy Pfizer and Glaxo Smith-Kline get their cuts of the profit from them.

As for those that have success, there are 2 in particular that I have personally met who have been to Russia, and have had some pretty good results. If bladder and bowel function and sexual function return are parts of success, then I'd say they have had quite a bit of success. Walking again will take time and work, but it can be done.

Dr. Kao may not be one of the doctors to have for SCI, but the procedure he uses has been done on peripheral nerves for some time and with a good amount of success. One bull rider here in TX has had quite a bit of functional return in his arm due to this procedure after a really nasty rodeo injury to his shoulder. I will link you to the sites for the reports if you want to look at the official reports, or the personal site of one of the 2 that went to Russia.

I don't understand how you can be so opinionated about something you haven't researched. If you didn't know these places existed, then you haven't been reading the cure and treatment section of this forum. Sorry to be a dick, but you really ought to know what you're talking about before you start bashing. When you ask somebody else if he/she is and idiot, but haven't yourself researched the topic in question, that makes you look the fool. Also, the arrogance about our so-called "health care" system in the US is getting old. Hell, our country is spending BILLIONS on research that hasn't gotten us anywhere, but won't allow successful procedures here. How can you call that EQUAL to Portugal, Russia, China, or even Ecuador?

[edlee]

sorry if I offended you by what I said, Jax. And no, I don't think you are being a dick for stating your opinion.

I admit that I haven't done the research that you seem to have done, and will further admit to ignorance in what any specific clinic or hospital may have in the way of equipment or expertise.

What you saw above is my knee jerk reaction to anyone who thinks spending a lot of money and traveling to other countries is going to give them a significantly better chance of a "cure",, or even of improvement.

I rank those chances at somewhere below those of making "$5000 a month, just using your own computer" as seen in any one of a hundred different info-mercials on television, any night of the week.

Do I think that either is possible,, disregarding the percentage of success???? Wellllll, it's possible. Would I reccomend, to anyone, spending any money on either one??? Wellll,,, not in this lifetime,, not if I was fond of them, anyway.

And yes,,, I do feel that we have in this country, the equipment, the experise, and the incentive, to do the same things that are being tried elsewhere. And I further believe that it is here, that the best chance for SAFE AND EFFECTIVE treatment for everyone, will be first implemented.

As much denigration as one hears , here , about the FDA,, they do their job,, which is, after all, to hold the "snake oil salesmen" in check.

Maybe I'm starting to show my age,,, It seems that the older I get, the less likely I am to believe anything. My experience has taught me that this old adage is true more often than not. " Don't believe anything you read,, and only half of what you see." While this is close to an absolute in dealing with politics, it is apt in the rest of life, as well.

I hope, Jax, that you will excuse my attempts to poke holes in opinions I doubt, as I will happily accept your doing the same.

The truth can take the poking,, and the false needs to be poked.
ed

[Jax]

edlee, on Apr 29 2009, 01:02 PM, said:

sorry if I offended you by what I said, Jax. And no, I don't think you are being a dick for stating your opinion.

I admit that I haven't done the research that you seem to have done, and will further admit to ignorance in what any specific clinic or hospital may have in the way of equipment or expertise.

What you saw above is my knee jerk reaction to anyone who thinks spending a lot of money and traveling to other countries is going to give them a significantly better chance of a "cure",, or even of improvement.

I rank those chances at somewhere below those of making "$5000 a month, just using your own computer" as seen in any one of a hundred different info-mercials on television, any night of the week.

Do I think that either is possible,, disregarding the percentage of success???? Wellllll, it's possible. Would I reccomend, to anyone, spending any money on either one??? Wellll,,, not in this lifetime,, not if I was fond of them, anyway.

And yes,,, I do feel that we have in this country, the equipment, the experise, and the incentive, to do the same things that are being tried elsewhere. And I further believe that it is here, that the best chance for SAFE AND EFFECTIVE treatment for everyone, will be first implemented.

As much denigration as one hears , here , about the FDA,, they do their job,, which is, after all, to hold the "snake oil salesmen" in check.

Maybe I'm starting to show my age,,, It seems that the older I get, the less likely I am to believe anything. My experience has taught me that this old adage is true more often than not. " Don't believe anything you read,, and only half of what you see." While this is close to an absolute in dealing with politics, it is apt in the rest of life, as well.

I hope, Jax, that you will excuse my attempts to poke holes in opinions I doubt, as I will happily accept your doing the same.

The truth can take the poking,, and the false needs to be poked.
ed

It's interesting that the original post is from the wife of the man wanting to have the procedure, and she asks for advice and says she's "scared sick." Then you come in and start bashing her and bashing on anything that isn't done in the US. I believe I remember you saying in one other thread that "Even if you are rich,,,,, if it isn't in the US or UK,,, I wouldn't reccomend it." That's a rather presumptuous statement, considering your lack of knowledge regarding the treatments and facilities elsewhere.

Some of the treatments done in other countries are safe and effective. There are two treatments in particular that have gained quite a bit of ground over the past several years. I have personally seen some of the results of the implantation of adult autologous stem cells done in Russia. I assure you that the pictures and firsthand accounts have made me aware of the safety and effectiveness of that particular treatment. Dr. Carlos Lima (in Lisbon, Portugal) has been safely and effectively performing the Olfactory Mucosa Autograft since 2003 (Clinical study ran from 2001-2003.) The official clinical study report is available at http://www.apssci.or...f/olfactory.pdf. You might want to take a look at it before you start mouthing about how ineffective the treatments are. The improvements are documented.

Don't get me wrong, there are some shady "doctors" out there (including right here in the US. I know. One of the shady doctors was my attending in "rehab."), and there are some who are trying to use the wrong methods for SCI (including this Kao). That doesn't mean that ALL of the doctors who are treating SCI are using methods that are unsafe or ineffective though.

As for disregarding the percentage of success: That's part of the problem. You disregard the percentage of success, which means you don't see just how successful these treatments are. Of course, you may define success as "walking out of the hospital a few hours post-op," but to most, I'm sure the definition is a bit different. It's not a slim chance at improvement, it's a really good chance of at least some functional and sensory recovery, even if not walking. Wouldn't you have loved to have normal (or at least better) bowel/bladder/sexual function back at some point since your injury? I know I would, and I'm sure I'm not the only one here who would like to do so. I've actually had some tell me that very thing.

To me, and to several others, it's not just about walking again (though that would be great), but the other things that are much more inconvenient than lack of leg use. One of the 2 people I met that have been to Russia is an incomplete quad several years out of injury, and is regaining hand function. Does that not count as improvement to you ed? I think most of the quads here would agree that better (or in some cases, any) hand function would be a great improvement. Now, maybe I'm young and naive, but where I come from, regaining use of anything the injury took would be considered at least some improvement. A good bit of that improvement is coming from LOTS of other places, but not here.

In our country, we have NO chance of utilizing the already-proven, safe and effective treatments, unless of course, the major pharmaceutical companies are going to be assured of their incredibly high profit from them. That is why the FDA is here: to make sure that the major pharmaceutical companies make their hellacious profits. Hell, some of the stuff that IS FDA approved is nothing more than the "snake oil" as you call it. The FDA doesn't deserve credit for anything but being another part of the political profit wheel. I wonder how much kickback they're getting from big pharmaceutical companies for their recent ruling on autologous stem cells...

What you feel doesn't change facts. Just because you feel that we have the best chance here for safe and effective treatments to be implemented, doesn't change the fact that safe and effective treatments have already been implemented elsewhere. And having the opinion that a treatment is ineffective and/or unsafe doesn't change the fact that it is actually safe and effective. Again, fact holds more weight.

I hope that you will excuse my poking holes in opinions and feelings with facts. I understand that you haven't had the opportunity to meet someone or know somebody that has had returns from any of these procedures, and I get that you're skeptical (I was too until I started researching). What I don't get is how you can still think that the US is the only place that has a chance of doing something safely and effectively, when that something has already been done safely and effectively in several other countries. Can you please fill me in as to where that conclusion comes from? Have you been under a rock for the last decade?

Our govt can't fund the research for treatments that are already proven. That wouldn't keep the researchers employed, and that wouldn't keep Pfizer happy. Instead, they throw a whole shitload of money at research that will lead nowhere to keep the researchers busy, the campaign financiers happy, and the public deceived into thinking our govt actually gives a shit about us and is doing the right thing. Some of us have really stuck to that old adage about politics, and do the research for ourselves to find out just how much our govt is lying to us, and just how far up shit creek we really are.

Edited by Jax, 30 April 2009 - 08:31 AM.

[DatsunKid]

Many years ago, not long after my injury, I was a patient of Dr. Kao in Washington state. Ultimately, the nature of my injury was such that I was not a candidate for his surgery at the time.

It is true that there is lots of controversy surrounding him and his methods, but I can tell of my experience with him for approximately 1 year.

He is a gifted surgeon and is extremely knowledgeable regarding surgery of the spinal cord. He was always a true gentleman and was very kind to me and my family. I never felt as if he was motivated by fame and fortune. I do respect him for his skill.

At the time, I would have allowed him to perform surgery on me, as my life was much simpler then. I did not have a job or children at the time. I had time to allow for rehabilitation, recuperation etc.

Now, 23 years later, I am married with three children and have a full-time career. I came to the conclusion that I would be happy with my existence and wouldn't pine away waiting for someone to fix my spinal cord injury. Not to say that I would not go through processes that would give me functional return, if the odds of return were excellent.

I do not have the time in my life now to spend unlimited time & money to devote to procedures that could bring functional return. If others have time & resources, I would emphatically say to pursue new things with good judgment & facts, as that is the way advances will come. I'm quite happy with my life, despite my disability.

As has been mentioned previous in this thread, the United States may not necessarily be on the cutting edge of this type of technology, so the idea of Dr. Kao operating a less restrictive environments is of no concern to me. Advances are going to come through trying new things & persistence. Each of us need to decide what we are willing to go through, along with the risks, to improve our individual physical conditions. If I were to pursue this type of treatment, I would be relying on first-hand knowledge and research, research, research.