Hi All!!

Obviously, Alan is still on a quest to find some relief for his neuropathy.

He found a website that discussed Triple Nerve Decompression Surgery for people with Neuropathy. I called them up and there is success in doing this but the place is in New Jersey.

Since Alan has already been operated on by his own orthopedic surgeon (it wasn't a nerve decompression surgery), but it was some kind of surgery on his calf to ease the pressure in his foot so the foot ulcer would not re-occur.

This was not successful.

Here is the information on Decompression Surgery that I just got off of the internet. Please let me know if any of you have heard of this and what you think.

Alan has the neuropathy between the pinky toe to the middle toe on the right foot, and on the left foot, the big toe to the next toe.

These are the only toes that have the BAD TINGLING BETWEEN THEM.

Here's the info:

The triple-nerve decompression procedure-in which ligament release relieves pressure on the tibial, deep peroneal, and common peroneal nerves-was first described by Dellon in Plastic Reconstructive Surgery in April 1992 (Dellon AL. Plast Reconstr Surg. 1992;89:689-697). In that study and 6 others published by Dellon and his trainees since then, the procedure has been associated with pain relief in 85% to 92% of patients and improved sensation in 50% to 72%. In those study populations combined, no ulcers developed in any of the patients who did not have a previous history of ulceration, and only 1 ulcer developed in the 29 patients who had a history of ulceration


Any comments are welcome. He's tried ALL THE MEDS. Nothing gives relief. He does do the bio-freeze at night, but honestly, if this decompression thing works on the nerves in the feet to release them, well, he'll give it a try.
Thanks much

Melody

Hi Melody,

I haven't heard of this, and have absolutely no qualifications for judging this based on the data. But the success rate sure does look good! I would certainly see if I could find any more info first, but if I could only base it on what you told us, and could safely assume that it's true, I would do it in a heartbeat. That's all I can tell you--what I would do.

Good luck with this. I really, really hope that it's the answer and that it can help Alan!

Hi Melody,

John and I met a doc who does this procedure. He's does plastic surgery and wound stuff in addition to the micro-surgery he does. His link is posted below in case you want to read more about it/him.

John went to him in 2003 for a wound he had from the hickman central line in his chest that got infected. He did speak to us about the surgery for the PN but John was in no shape to undergo more treatment at the time. Luckily, John's PN has improved quite a bit since then and I don't think he would risk surgery at this point. For us, there's always a fear that it will be worse after the surgery and he been through enough in the past 7 years. I don't remember the success rate with this procedure but you need to ask them to break down what their statistics mean. How do they define success?

How many have 100% relief and for how long?
How many have had noticeable improvement?
How many have had no improvement?
How many had more pain/symptoms after the surgery?
What are the potential side effects/complications?


http://www.georgetownuniversityhospi...dy.cfm?id=1656

There's always a risk that comes with surgery so make sure you get the best doc who has done lots of these procedures successfully. It sounds like they can tell upfront fairly easily if Alan is a good candidate for this procedure. You can always go for a consult...there's no harm in checking (except for the $$$ you'll spend).

if you do a search on Dellon here and at other peripheral neuropathy boards there have been a lot of posts about this in the past. The record for this is very mixed at best.

thanks to you and all who replied.

I'll do a search on Dellon as you suggested.

I also called up the Neuropathy Center at Cornell. I told them all about Alan and told them what tests he has had done. I then asked her if they do anything different. She was very honest, she said "no, it seems like he's had all the necessary tests"

So then I called up Alan's ortho guy who did the other surgery. I spoke to his assistant and asked her if the ortho did that particular procedure.

She got back to me and said "The doctor says it all depends on how his last emg turned out." Since I have all of Alan's records, this was a simple task.

I couldn't fax them to her because all the pages came out black at her end.

so I made copies, went to the post office and mailed them to her.

His ortho will look at Alan's emg and make his determination.

Hey, it's a start.

And thanks for the information.

Melody

--in determining whether this surgery would have a chance at helping is just where the neuropathy stems from.

Symptoms in the toes can be caused right there, in the foot, the calf, at the knee (the peroneal nerve is particularly prone to compression there), the thigh, the pelvis, the lumbosacral spine, or even higher. A well-done EMG/NCV might be able to pinpoint just where the signal disruption originates from, maybe (if it's big enough to be seen in the larger nerves and is not small-fiber caused).

In fact, take a look at:

http://emedicine.medscape.com/article/1141734-overview

http://www.utmem.edu/gim/smalltalks/le-neuropathy.pdf

http://emedicine.medscape.com/article/1234809-overview


It would seem to me that such a "triple" release would involve cutting high up on the thigh or near the hip to get at all the origins of the nerve branches there; is that where the surgery is done, or are there several seperate incisions involved?

Hi Melody

I've been dealing with neuropathy in both feet for several years. Have been using molded shoe inserts and gabapentin to manage the discomfort. Not a diabetic thank heavens, so don't have to deal with any foot ulcers or other problems prior to that condition.

I did see my podiatrist a couple of weeks ago to explore the possibility of any surgical remedies, including the endoscopic technique. Have a local foot specialist who advertises this method. At any rate, she felt that the problem was not in the feet, but possibly emanated from the lower back and referred me to my primary care doc. Saw him yesterday, he doesn't feel the problem is back related and suggested I look into the endoscopic technique. Called the specialist this AM and have an appointment on next monday to look into it.

The specialist is Stephen Barrett, and his site might prove interesting to you. Specifically, under the procedures button, Morton's entrapment does have a video of the actual procedure being performed. Will prove further if I decide to take this route.

What does your neurologist have to say?
A neuro who specializes in PN (not many do) would be
my next bet, before any cutting.

Gary:

I found your posting VERY INTERESTING.

So interesting in fact that I googled Stephen Barrett and I found the website.

I just watched the video titled "ENDOSCOPIC DECOMPRESSION OF INTERMETATARSAL NERVE".

When I watched where the doctor inserted the needle I said to myself 'This is exactly where Alan has the tingling".

Now he has already had the procedure where they do something to the calf and it was supposed to stretch something so it wouldn't put pressure on his foot ulcer. That procedure failed. He still gets the same foot ulcer. It heals, but he re-occurs.

But his thing is the TINGLING between certain toes.

Hopefull we'll hear back from his orthopedic surgeon who did the originally surgery and maybe he can do a nerve decompression (between the toes I mean).

On an interesting note, Alan's sister has had Morton's Neuroma for years and gets trigger point injections. We had asked his podiatrists "Can this be Morton's Neuroma and he said "no, it's not".

This journey never ends.

Melody

Hello,
Don't know if this is off subject but I just returned from seeing my surgical podiatrist at the VA hospital. I asked for and was granted a Lidocaine injection into a Morton's Neuroma that has been the center of disconfort concerning my PN. Will see how this works out over time. Was told two years ago that she would not perform surgery due to my having PN. Wishing everyone a pain free evening and LIFE.
Lanny