“Manuela’s” most recent email set my skeptic senses tingling. This worried Colombian wife had reached out to me across the transom of the World Wide Web — emphasis on the World Wide — because of my personal experience and extensive research into awareness in vegetative states. Yet in this instance, I think my skeptical chops may be more helpful, as I attempt to get between her and predatory stem cell regeneration quacks.
You’ll see why I’m so concerned when you read her message:
Thanks for replying to my emails, this also helps me a lot [after I sent her a list Kate Allatt prepared for people in a locked-in or minimally conscious state].
I think my Husband (His name is Felipe [my pseudonym for him]) is in that period of the coma [referring to my last email, in which I described my partial awareness during my coma, as my consciousness flickered in and out], he seem to be conscious some times, but other times he looks like he is somewhere else.
He also has against his health that he has lost so much weight, he was 185 pounds, and today he is 125.
We are looking for other options too, there is something called cells regeneration, it is very expensive, but I think is a good option.
I will check out your blog.
Have a great day!
You may have picked this up by now, but my diplomacy skills are so atrocious that I could qualify for a position in the Trump administration diplomatic corps if I weren’t such a liberal. Thus, this was my typically too-blunt reply:
I would highly recommend against trying stem cell regeneration! It’s not only unproven, but is potentially extremely dangerous. Read this article about three women who lost their all or part of their sight after having stem cells injected in their eyes in an attempt to cure macular degeneration: Patients Lose Sight After Stem Cells Are Injected Into Their Eyes. I think that in many cases, stem cell regeneration “therapy” is performed by quacks or at least unlicensed doctors pushing an unproven therapy, often exploiting desperate people.
If I were you, I would first try Ambien. It’s harmless, inexpensive to try, and has had a few — but remarkable — successes (it was a small study). Zolpidem is the drug’s name. It’s available in a cheap generic. I used to take it myself before my coma.
Another technique that has shown temporary effectiveness is deep brain stimulation. I put some links into my first email, but here they are again (actually, this time the Ambien link is more specific to the drug treatment). Ambien: Sleeping pill may rouse coma patients and deep brain stimulation: Electric brain stimulation rouses some people in a minimally conscious or vegetative state.
The other thing that might help Felipe’s would be the physical therapy you’ve already said you were committed to beginning. If careful enough, that should be harmless as well.
As for Felipe’s weight, I myself lost a lot of weight — and became dangerously skinny — while being fed through my gastric tube. Perhaps you can request the high calorie liquid food I was eventually put on (if he isn’t on it already).
Also, would you like me to put you in contact with the woman I mentioned who was in a locked-in state, Kate Allatt? (The link is Kate’s website, so you can contact her yourself if you like.) Kate is much more experienced in directing patients to resources than I am! In her memoir, by the way, she advocates for sometimes going against doctors’ wishes when you know what’s best for your own body. She wasn’t talking about a loved one’s body, but you are Felipe’s voice right now.
At any rate, I hope you have a great day, as well, and that Felipe continues to improve!
There are further medical steps Manuela could take beyond the ones I had already suggested to her, though some involve slightly more powerful drugs. (She’s a looong way away from worrying about Ambien affecting Felipe’s driving.) These drugs at least have the advantage of having shown clinical effectiveness, albeit in studies that were small by necessity.
While stem cell regeneration is a promising area of legitimate medical research, these unlicensed clinics are a whole other kettle of fishiness. I had read about these scammers before, including an article about three women who lost their eyesight — in whole or in part — in an attempt to forestall their macular degeneration (which I linked to in my email).
I had also read about the sad case of Jim Gass, who had traveled to Mexico, China, and Argentina — and paid tens of thousands of dollars — to have stem cells injected into his spine in order to help him recover from a stroke.
Instead, he developed a huge tumor on his spine.
Whereas Gass was hampered before with a disabled arm and weakness in one of his legs, he’s now a quadriplegic with the exception of one arm. And the growth of his spinal tumor continues unabated.
It may be too late for Jim Gass to learn this lesson about the dangers of unlicensed and unregulated stem cell regeneration clinics. But how can I impress that on Manuela without sounding paternalistic?
On the one hand, she’s obviously a dogged online researcher. That’s how she found my coma recovery blog in the first place. But there’s a reason why these scammers have a continual stream of victims beating down their doors to be fleeced.
There are a lot of desperate patients out there with no legitimate medical treatments, and they’re grasping for treatment options. I’ve only been able to sense secondhand what my loved ones went through as I lay near death, with my doctors telling them to give up hope for my full recovery.
Or any recovery at all.
Keith did what Manuela is doing now, researching online. He found Dr. Adrian Owen’s tennis study, in which Dr. Owen and his team managed to communicated with a few people judged to be in persistent vegetative states.
That gave Keith the encouragement to continue trying to stimulate my mind as best he could without access to the expensive fMRI scanners Dr. Owen et al used.
Stem Cell Regeneration: Hopeless Hope Vs. Clinically-Tested Treatments
What kind of desperately-needed hope can I offer Manuela?
Well, I’ll probably send her a few more links to clinically tested treatments. Amantadine, a flu-fighting medication used as well for tremor in Parkinson’s patients, and Levadopa (also used for Parkinson’s disease) have both helped to improve awareness, increase periods of wakefulness, or even sparked awakening. While use of these drugs would be off label, at least there is clinical — if limited — data to back up their potential effectiveness.
Indeed, this is what the International Brain Injury Association had to say regarding patients in developing countries:
The situation gets worse in undeveloped countries where one can hardly find a brain trauma neurorehabilitation unit and exceptionally few patients can access them.
These treatment studies of course need to be replicated to spread more widely. But given that they employ tested treatments/drugs that are being used off label by specialists in the developed world, they’re certainly safer than stem cell regeneration, which is at best worthless and at worst has caused proven harm to many.
Manuela is already determined to take the matters into her own hands by giving Felipe physical therapy, despite his doctors’ dismissal of its utility. (My doctors said the same thing, and I believe that passive exercise would’ve at the very least shortened my recovery time. And given that my awareness and movement improved every time I was significantly stimulated, the physical therapy might well have hastened my awakening.)
In the end, all I can do is to try to gently encourage Manuela to try these safer and much cheaper interventions, which have show actual clinical effectiveness. With my decided lack of diplomatic skill, I’m far from the best person to attempt this.
The stem cell regeneration clinic scammers will be waiting to pounce if I fail.
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