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Old 10-14-2014, 11:41 AM #11
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Default Two things about Texas

Quote:
Originally Posted by beatle View Post
We have chiropractors here that do the ankle blocks but not combined with the electrical component...it is not the CET procedure.

In my search, I did see one in San Antonio. Maybe that is near you.
There ain't nuthin close, 4 or 5 hrs to San Antonio
2. Always someone on your bumper wanting to go faster.
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Old 10-14-2014, 02:45 PM #12
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I searched for availability of the procedure in Colorado without success. I did locate it in Arizona, Texas, Indiana and even Canada but traveling to these places is not feasible since several treatments are required.
Oh well. Thanks for looking. I'll have to quiz my neurologist on this, although I can anticipate his answer, something along lines of an unproven treatment, won't work, etc.
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Old 10-14-2014, 09:27 PM #13
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I too am skeptical of anything new but some of us need all the help we can get (I have PN in my entire body).

If it is successful, it will eventually be available everywhere.
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Old 10-14-2014, 09:50 PM #14
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Quote:
Originally Posted by beatle View Post
We have chiropractors here that do the ankle blocks but not combined with the electrical component...it is not the CET procedure.

In my search, I did see one in San Antonio. Maybe that is near you.
I had this done late last year. I went multiple times with little result. If anyone does decide to do this I recommend making sure they use the same equipment, frequency, and block medication (marcaine) as were in the study. The place I went to used Russian stim on me and that is not what was used in the study. That may be why I got poor results. I would be curious to know how others here have responded.
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Old 10-14-2014, 10:27 PM #15
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Quote:
Originally Posted by H1N1Guy View Post
I recommend making sure they use the same equipment, frequency, and block medication (marcaine) as were in the study. The place I went to used Russian stim on me and that is not what was used in the study. That may be why I got poor results. I would be curious to know how others here have responded.
Great point. I would love to see more studies done. I just wish they didn't take so long.
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Old 10-15-2014, 12:32 PM #16
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I too am skeptical of anything new but some of us need all the help we can get (I have PN in my entire body).

If it is successful, it will eventually be available everywhere.
Beatle, I'm so sorry to hear about the extent of your PN. I wonder often if that's my eventual fate as well, and wish you - and all of us here - the best in dealing with it.

As for CET. I asked my neurologist about it although was fairly sure he wouldn't encourage it. I was correct. I'd sent him quotes from a Podiatry Journal I found online. Here's the gist of his reply via voicemail:

"The article and quotes are kind of vague, there's no data that helps and no trial that helps. I think they're writing what you need to hear. It's probably not dangerous, although if you're paying cash that's another story. So it may be ok to try but insurance will probably not cover it. I think it's very questionable if it's going to improve the situtation. I try to deal with stuff that's been proven, FDA approved. From what I can say that stuff hasn't been approved."

I'm paraphrasing but you get the idea. For those interested here's the article (maybe someone has already posted this earlier in this thread):

http://www.podiatrytoday.com/can-com...ral-neuropathy

HINIGuy - sorry to read that this didn't help you. I guess we can't expect miracles. I'm hoping others who've had the procedure will weigh in. If I find someone who can do it in my area, particularly for the hands, which I haven't read about in the various accounts, I'll certainly post about it.

Here's an edit based on more research:

Today I spoke with someone at the Las Vegas office of the Dr. Odell who seems to be one of the pioneers in this, his name is on several of the articles. So far no one has been able to tell me if anyone practices this is Los Angeles.

They told me that most people who come in from out of town stay in the area for 2 weeks and have daily treatments, 3x/week with anesthesia and twice only on the machine. But she allowed as how they only go the anesthetic route for foot patients. As I'm primarily looking for relief from hand PN that's a bit troubling, particularly in light of H1N1Guy's comments about making sure the treatment is the right one. She said there were two diagnostic type treatments that run $200 each and that each subsequent machine hookup is $40. It remains to be seen if my insurance (Anthem CA) would cover any of it. Knowing how bad they are I'll assume not.

I'll continue to research and post any further info. I do have a friend who lives in LV so could basically stay for free which of course helps. But would love to find someone local before taking the plunge of uprooting my life and work for a couple of weeks, especially considering that additional treatment might be necessary. Assuming any of this works of course.

Last edited by Balanchine; 10-15-2014 at 02:47 PM. Reason: additional info
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Old 10-15-2014, 12:49 PM #17
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Default Where in Europe?

How can I find it in Europe, and I mean anywhere in Europe, I will relocate..
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Old 10-15-2014, 03:25 PM #18
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I doubt any peripheral treatment would help those with damage to the dorsal roots. The failures may reflect that.

Some people lack the ability to repair damage at the dorsal root level along the spine, and those people have a genetic reason for the failure. Those people most likely are resistant to conventional other PN treatments.

example of dorsal root damage by vaccine:
http://www.uscfc.uscourts.gov/sites/....DOE101807.pdf
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Old 10-15-2014, 08:40 PM #19
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Default Cet

I did a search on this and a foot dr in my area IL actually does this but an ankle block does not sound something I would want You always wonder if something could be made worse or pain more permanent I did not like the shot for the skin punch so an ankle block not so sure about.

Wish there were people that had that with experiences posted I may search that too
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Old 10-15-2014, 09:32 PM #20
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Thank you very much Balanchine for this information and for your research.

I would relocate and pay anything for a treatment that could regrow my nerves. My body is rapidly deteriorating, skin is very noticeably old, wrinkled and very dry, and thinner too. I am 44 years old, underweight and losing more. My leg muscles twitch uncontrollably. They look like special effects from a horror movie but it is my reality.

I hope something does come along, a drug, a machine, a stem cell treatment..something. I would be a guinea pig for anything if there was a chance it could stop this and turn it around.

Anyway, I too wish everyone going through this the best.
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