stem cell treatments?

[Buck_Nasty]

I have read a lot about the different stem cell treatmants going on
all over the world and other treatements that use nasal mucosa.
I have read about a lot of people having these treatments, but I
never hear about their recovery. If these treatments work, then
why aren't people going nuts over this? If they don't work, then
why do people continue to spend so much money on these procedures?
It doesn't seem to make any sense.

[dan_nc]

I think that some procedures have shown some promise--just not the radical improvements that we'd characterize as a cure. Right now, seems like all the stem cell treatments are a stab in the dark.

But for people with the $$, a one in a gazillion chance of restoring function is worth it.

[Cherry]

Hi buck,

Totally agree - I guess it just proves how desperate this B*****D injury makes people. Hell I'll gamble at a casino any day of the week, but I figure you only get one body right? Like most I prefer to wait until a better option arises, though i commend the risk-takers. And I just know that our patience will pay off!

CIAO

[dan_nc]

I applaud those individuals who spend vast amounts of money and great personal bodily risk for these unproven treatments. For those of us who can't afford it, "thanks!"

It is my hope that someday, when the "cure" comes, it will be affordable enough for the rest of us.

[Leo]

Hi wcr,

This is not true,

"None of the various treatments available at this time have demonstrated functional recovery."

All one needs to do is read handibobs thread from start to finish. Yes he maybe the exception to the rule however it's there.

I myself got very little motor recovery but a little. I have personally witnessed 2 quads with no wrist movment before have some two weeks later,.

is it enough to go for it, probably not or maybe under certain circumstances.

lack and frustration with poor follow up yes., but that goes both ways people going need to document before - after and continue.

is this the way it should be, hell no

[dan_nc]

WCR,

What degree of functional recovery would make a treatment "worth it"?

[Wise Young]

Buck,

It is important to distinguish between stem cells and other types of cell transplants. I am frustrated by the continued tendency of people to call all cell transplants stem cells. An OEG cell is not a stem cell. A stem cell can produce many different kinds of cells. Most of the cell transplants that have been done are not necessarily stem cells.

Wise.

[teesieme]

Buck,

It is important to distinguish between stem cells and other types of cell transplants. I am frustrated by the continued tendency of people to call all cell transplants stem cells. An OEG cell is not a stem cell. A stem cell can produce many different kinds of cells. Most of the cell transplants that have been done are not necessarily stem cells.

Wise.

In the stem cell forum I retracked a post about "what I've found to be a common belief..." (due to my comment vs. information provided by Wisey, sorry, wrong forum) anyhow, my point with the above quote and what have you is that I've noticed with the minimal type advocacy (:o) I am personally involved in compared to others, the people I have spoken with on this subject majority-wise believe if they were to support "stem cells" (generalized) it would mean more abortions, seriously!!!
I do my best to inform them the differences of but it makes me wonder, really wonder what the common belief still is when it comes to this quite obviously "categorized" subject, when we, those living with sci still get mixed up with the terminology as well as studies of or what have you innocently ourselves.

Just my thoughts again. Take care~ T.

[Tim C.]

Is it whom, or who? I never seem to know when to use either: so much for my marine engineering education, not doing me much good now as a quad. At least I'm not causing oil slicks across Prince William Sound.

In any case, MR BUCK_NASTY, DAN_NC, WCRABTEX, LEO, WISE YOUNG, et;al,
Inasmuch as I can only represent an army of one, but also as one of those SCI who did participate in one of the experimental cell transplant procedures often referenced in this site, I feel qualified to add to the several responses already posted in this thread.
However, I first strongly recommend that you delve into a simple search back on the subject matter of Dr Huang's work as written by Dr Young in this CareCure site. It struck me as a fairly accurate assessment of Dr Huang's progress, while simultaneously raising pertinent questions regarding the theory of the therapy, as well as the mitigating factors of those SCI who pursued the surgery. A good read imo.
You ask; what about the success, or lack there of for those SCI receiving the surgeries? With regard to Dr Huang, I believe the singlemost reason for not seeing a comprehensive report on our results on CareCure is due to the fact that we did not have the benefit of a standard, recognized form clinical trial study. No control group, no single, unbiased neurologist examining us or tracking our progress through follow up physical therapy. In fact, there was no standard of therapy awaiting us upon returning to the U.S.
As a result, the Dr Huang patients ended up reporting on themselves via CareCure threads. As such, our progross data were more like commentaries, rather than scientific. As someone here accurately mentioned however, none of us were 'cured'. Some of us did report improvements, but these were largely unsubstantiated, or at least exaggerated. One example of this (sorry Leo) was 'Handibob'. His claims of significant improvement (foot sensation) were exposed in one of Dr Young's posts. Yet, did he improve slightly in other areas? Who really knows for sure. Did I improve? I can't say definitively, yet those who see me peiodically claim I did. I felt some improvement myself and reported what I could fairly, enabling me to sleep at night. Did the others?
The only common thread here is desperation for recovery, and that our minds can be more powerful than we give it credit for. ($ incentive can be a close 2nd, ala Detroit Medical Center).

I hope I didn't make too many enemies here, I just believe the truth is worth it.

[handibob]

Tim Tim Tim,,,,, Please don't make reference to my recovery as being just foot senation. My recovery has been documented by the NON-PROFIT Detroit Medical Center. As I have said before many times, intense physical therapy is a must if you are considering any surgery. You and I had this very conversation while in China in 03. Sorry Tim. Bob

[handibob]

I know I'm probably way overdue on all of this but here are my scores. If anyone has any questions my physical therapist, Bill, would be happy to respond. Bob

[QuadPro]

And I am frustrated by the fact that there is still no treatment that will give me functional hands back and take my pain away now.

[quadc5]

And I am frustrated by the fact that there is still no treatment that will give me functional hands back and take my pain away now.
I agree with you.
What kind of pain do you experience.

[QuadPro]

neuropathic

[Tim C.]

I hope I my references to your particular progress history would not stir you to go on the defensive. I'm sure I'm not alone in cheering any and all progress in terms of recovery, be it sensory, or motor as a result of Dr Huang's work.
Please note however, the mention of your pre-existing, incomplete sensory clarification as it relates to your foot, was not my words, I was only referencing Wise Young's post of 10-24-03.
As for your comment regarding the not-for-profit program sci program at the DMC, I should sincerely hope it was nothing but. I was merely referencing my physiatrist's (kessler) advising how the relationship between Dr Huang and Dr Hinderer, was generating huge funds for DMC. I can elaborate further on this if you wish.
Additionately, it's been widely reported on CC, that the appearance of almost immediate improvements upon recovery from the cell transplants were not likely due to axon regrowth. This speculation can also be found in Dr Young's treads.
Lastlly, it cannot be ignored that many sci could eventually demonstrate motor improvements from merely actively engaging in aggressive PT alone. Therefore, for many not maintaining similar PT pre-Huang, then pursue agressive programs post, the improvements attributable to the Huang procedure only, become somewhat less than definitive.

I hope this goes a long way in the interest of full disclosure.

[wildwilly]

Handibob's gains in strength and function have been amazing especially when one considers both the experimental procedure and the time frame in which the recovery occurred. The MMT scores post-China are very interesting to say the least. I do not know a PT that cannot distinguish between a MMT score of 0 vs. 1 (intrarater reliability does decrease with the addition of +/- to the 0-5 scale). I think that most people would agree that neurogenisis did not occur in 24 hrs but something (neurotransmitters, second messenger, trophic factor, sx procedure...) irritated/stimulated/reactivated once injured/dormant/latent neurological pathways for improved sensory/motor function to be documented in that initial period. I agree that continued improvement could be more tightly correlated with intensive PT vs the surgical procedure. Another factor maybe PT aimed at recovery and not adaptation. Something has allowed Handibob to make gains, the surgical procedure? intensive PT? incorrect initial DX? natural recovery? I believe these are valid points that warrant further exploration to elucidate any correlation.

Wildwilly

[Tim C.]

transplant trials in response to HANDIBOB'S posts.
Inasmuch as all of us sci who made the investment consisting of both our time and $savings in order to undergo Dr Huang's procedure wanted nothing less than the most recovery possible, you raise a critical question with regard to the extent of physical therapy v. recovery success.
In one of your earlier posts you suggested that the relative high degree of your successful recovery was likely due the relative high degree of your physical therapy committment.
Based on your claims, it would be helpful to many to understand just what criteria you used in this post? What was the extent of the PT were you engaged in prior to your oeg transplant?
Is this best explained by reiewing your 1999 status report as you included in your other thread?

[Schmeky]

And I am frustrated by the fact that there is still no treatment that will give me functional hands back and take my pain away now.

Agreed 110%. If quads could become para's, this would be a medical milestone. I wish all quads "this cure" first.

I'm a para.