What you said was not hijacking the thread,it's the truth,and so many
are being hurt by the truth...But so many are no listening to it,
if it's not effecting the h-ll with it..Well bad things have a way of popping
up,sometimes no matter how much money you have...C thank you
you said it so much better then I. And no that sugery would not or
could not ever help me..

I'll steal it as well Bob and I are going home tomorrow,my tests are done
his sugery is done,,we will have home health care his girls,and I don't
want to catch anything. And my son and daughter and my grandchild
are on there way home..Son and Daughter hugged and some tears,little
almost 7 month Ozzy pointed at his first tooth and laughed...He makes
me want to be strong,,but I want all to be healthy everyone..Hugs to all
and thanks so much C..Sue

I had sent my info to that dellon back when. He I felt and I may be wrong was a sale person. He felt over the phone I was a candate for surgey. He wanted the money upfront for him to do it not the associates and not through insurance. Then a few weeks later I got a call seeing if I decided. I then found out it should be the last possible thing to do cause it can damage other nerves. Also then my pain went to the other leg too though the severe is still in the tts area. Just thought I would share. Interesting article though and that is hopeful when I see people do get well. Its nice to hear positive rather then always bad stuff.

Yep he is,if not should be, be carefull never yell out i'll pay anything,
to get rid of this pain...It doesn't always work as fast or as well ,on other
patiences,those are the people with no money,,and maybe no foot.,
Hugs to all Sue I've had buggy eyes on Med's.. that was mean of
him D.oh not the News guy that one you saw today...

Kat,
I know from first-hand experience the limitations and value of the surgery. My experience was with Gedge Rossum in July, 2005 at the A. Lee Dellon Institute for Peripheral Nerve Surgeries. At that time I was considering a surgery as a possible remedy for my PN pain. I had the neurosensory testing which showed some evidence for axonal loss but I only had a weak bilateral classic Tinel's sign during percussion. Two neurologists and a physical therapist confirmed this subsequently. I give Dr. Rossum credit for a good physical exam and a long and detailed discussion with me and my wife of small vs large fiber neuropathies as well as symptoms and treatment options for sensory vs motor vs sensorimotor PN. The conclusion from my visit was that the odds were low that my particular type of PN would benefit greatly from this type of surgical intervention. However, he agreed w/ me that my borderline OGTT warranted further investigation and he encouraged me to pursue this first in contrast to a former neurologist who allowed that borderline high was normal. In any case, long story short I won't pursue the surgery since it is unlikely to help me.

But as Dahlek posted there is a small group of PN patients who have been helped by the surgery but this is a carefully selected group in that the PN must be due primarily to an entrapment, i.e. a as Billye noted a tarsal tunnel type of nerve entrapment. The tarsal tunnel decompression can be helpful but I have read other accounts from patients who were not helped. Like Daniella said a surgical intervention should be the last option because there's always a risk of more nerve damage in the process.

Alkymst

Anything you 'can't take back' or 'reverse' does need to be really thought out carefully. I have learned to pay more attention to the after effects of procedures and treatments, by experience.

It is difficult to have a condition, especially 'idiopathic', and having to accept that they just do not know what is causing the PN, so, I think people who have exhausted all diagnostics need to be wary of treatments, as we are in pain and sick and at times it seems anything is better than nothing.

PN is not a disease. I know I say this all the time. It is a symptom, and for some of us, the disease that is causing the symptoms remains a mystery, at least for now.

I have a good doc, and I just said, I don't want any more drugs or treatments until we have exhausted all diagnostics, so I am into some pretty odd stuff right now in what is my last ditch effort to pin the cause of this down.

Some causes of some types of PN are treatable, some are not. There are a lot of different fish in the net of PN....even mammals are caught in fish nets! What is that old quote....if you hear hooves think zebras??

Sometimes, over time, the cause of the PN becomes evident. But I think any permanent approach to a yet unsolved mystery needs a great deal of pondering. (Yes, I am aware it hurts, and we don't feel well.)

I want to thank the person who made it possible to view the video regarding surgery for neuropathy. I have been diagnosed with charcot marie tooth and am looking for anything to help this condition. I still have some feeling in my feet, but can't walk fast anymore and do not have the balance I once had. From articles I have read, it seems that stem cell research may be helpful and recently on the news, I saw a breakthrough with stem cell research that does not require the use of an embryo. All of these things give me hope. If anyone knows of anything else, I would greatly appreciate any info I can get. I was a flight attendant and was recently recalled, but couldn't accept the position due to the CMT.

I applaud your efforts in the 'homework' quarter. It really is something we all have to do on our own, because HOW you read something, your take on it, can well be different from anyone else's.
I don't mean any disrespect to Dr Dellon himself, but some of those that ascribe to the practices of his philosophies at times, seem a bit too encompassing in terms of what can be cured. I don't object to Dellon's work at all, but it is one very small narrow aspect of the 'neve' fields. Soo on the one hand, selective surgery for those who are 'proper' candidates is a good precaution. I do hate the 'hype' and false hopes that soo much of this raises in those of us who constantly suffer.
Alkymyst is right and lucky that he wasn't an ideal candidate at the time. I hope you will update us on all that's transpired from your first trip to Hopkins? Somehow I suspect that there will be many, many more tests, a lot of false 'avenues' and other strange events that go with that diagnosic territory! Please keep us up to date? There are many here who have those 'been there, done that' tee-shirts'' that can help you understand some of it - tho I figger you are better capable than I most times. Bouncing ideas around can be healthy at times, you know?
Cycleops, you are soo good in putting PN in the 'symptom' section of the medical world...I with my CIDP, just call it all a 'condition'. The end result of a lot of different things some maybe gentic, others real diseases or additional 'conditions' that all compounded and 'ganged' up on my nerves. Also, sounds to me as if you've been reading some "Rare Diseases Org's' info in depth.
In a way, I too have 'hi-jacked' this thread, but coming back to the reasons- Is is that PN has far, far too many possible outside sources as the protagonists [causes] and far little research has been done for PN as an issue on it's own. That is changing more now, as docs see connections with diabetes [a strong and vocal community], cancers [chemo and radiation patients are also strong and vocal], spinal issue sufferers [ditto], and more, new groups who have more power than those who 'support' PN as an issue by itself are vocal and are getting results. Thank goodness 'progressive' docs such as my own and those of many others here enable us to be beneficiaries for those doctors' capabilities to think outside the box!
It will probably take another 20-30 years for any benefits from current research to really show in clinical trials any benefits or drawbacks. It IS up to us to learn about these things, and be educators of all those around us about our issues, and how much needs to be done. I'll get off my soap-box now.
Remember there is no stupid question about PN! It's really all chemical and genes...and If I can wrestle to some sort of understanding [chemistry impaired] anyone can get a good part of it! Understanding helps you deal with what is happening to you and it also helps you talk to your docs! 's - j

I had the surgery by Dr Dellon. My foot on which he operated is now much worse. I was not screened beforehand for small fiber neuropathy which is what I finally learned I have. Even Dr Dellon admits that small fiber neuropathy cannot be helped with this surgery. Why didn't he screen me for this condition before he cut up my leg, ankle and foot and emptied my bank account?

To my knowledge, his institutes do not have the capability of properly analyzing a punch sample through electron microscopy. That is something only a small number of tertiary centers do (Johns Hopkins, Massachusetts General, Jack Miller Center, Cornell-Weill/Columbia, Jacksonville Shands most prominent among them).

Anyone can take a punch biopsy sample, but getting is properly analyzed for intraepidermal nerve fiber density/condition is key.

And, given that his is a money-making operation, it would have little incentive to test for/find out about conditions that would contraindicate the surgical procedure.