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01-15-2019, 07:03 PM | #1 | ||
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My friend has been having burning, tightness, tingling, frozen, etc in his feet for about 2 years now. He has seen docs locally and they've just given him lyrica and cymbalta which seemed to reduce the symptoms a bit but not much.
He went for a nerve conduction test and was told small nerve neuropathy, nothing we can do. He is not diabetic, his sugars have been up around 140 for brief periods of time, but mostly stay in the 120 range. He's tried brief bouts of chiropractic, laser and accupuncture. He's tried kratom, ALA, B12. No doc will really investigate what's happening. So he's justifiably frustrated. He just went to CO to a Assoc of Extremeity Nerve Surgeons doc and after roughly half an hour the doc talked him into decompressive nerve surgery. Apparently the Hoffman-Tinel sign is the criteria for this. I've read up on this a bit and it certainly sounds promising, but I have to find a single "real" person relaying information on it. (plenty of doc office "testimonials" however). I found one thread from a few years back that received no responses, so I thought I'd try again and see if anyone has either experienced it, knows someone who experienced it or has any knowledge whatsoever of it. The doc (anderson Podiatry) is scheduling him for 2 weeks out... Thanks so much for sharing what you do... it helps... |
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01-16-2019, 07:17 AM | #2 | ||
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If those levels are for 12 hour fasting blood draws, that would be considered diabetic, or close to it (impaired glucose tolerance), either one of which could result in small-fiber neuropathy . . .
And I am extremely wary of anyone doing decompressive nerve surgery without both direct evidence of a compression, such as a history of stenosis or trauma, and without a very extensive work-up. There are so many possible causes of neurologic symptoms, and the symptoms from compressive causes can be mimicked by many other etiologies, that a real process of elimination investigation is called for to rule out more systemic possibilities (though I realize for those with poor insurance or lack of access to specialty centers this is easier said than done). |
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01-16-2019, 09:13 PM | #3 | ||
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I too am really suspicious of this guy... Patient got the quote today for the surgery on one leg for $9000 (self-pay), and we looked at the patient portal for the notes on the visit and there was nothing... no meds, no history, no notes, nothing. Maybe the doc sucks at paperwork, but it scares me that there's nothing backing up anything he said. I am really now concerned about the lack of testing and even more so about the lack of concern for the cause of the neuropathy in the first place. The prodding for tingles and patient's ability (or somewhat lack of) being able to stand on one foot seems to be the only criteria for this surgery. Sounds pretty sketchy.
Thanks so much for responding... this doc assured him of a 90% chance of success and I'd hate to see him go thru it only to have it not work or get worse. I think it would send him over the edge... It's really a shame what the medical profession has become. I don't trust any of them anymore. |
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01-16-2019, 11:45 PM | #4 | |||
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Surgeons tend to focus on surgical "fixes"
Find someone interested in testing & diagnosing.. Perhaps Naturopathic Dr or Osteopath ? AANP - American Association of Naturopathic Physicians: Natural Medicine. Real Solutions. Any mention of checking for blood flow issues in the legs? Does or did person smoke? I would NOT do any surgery until proper testing is done and a clear reason for it can be shown..
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01-22-2019, 03:49 PM | #5 | ||
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01-25-2019, 02:37 PM | #6 | |||
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01-27-2019, 08:42 AM | #7 | ||
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Thanks everyone for the advice... so far he has agreed to do some more research before jumping in to do this surgery. The hope of curing the pain is a strong influence, and the lack of concern or I should say lack of wanting to investigate further among docs is scary. Dellon (who I've read is the founder of this surgery) has developed some PSSD device (pressure specified sensory device) to test the nerves, which apparently just mimics the hoffman-tinel test with a fancy output graph.
I would think that with all the "testimonials" of relief and Dellon's claim of this surgery helping 80% of patients, there would be an outpouring of praise and positive stories for it. So where are they? I once again just want to say thank you to all of you sharing your stories... I don't have neuropathy, and can't imagine the feeling of it but your sharing helps me understand what my friend is going thru and how to help. |
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02-03-2019, 01:33 PM | #8 | ||
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I decided to do this because I have had Idiopathic Neuropathy for the the past 25 years. I learned to live with it without any meds by just eating healthy and taking vitamins. The past year I noticed pain in my left leg from the knee to my ankle ( the left leg is worse than the right). My PIN was always just my feet not my legs. I had the surgery 4 months ago on the left leg. The doctor told me it would take about 6 months to a year before we knew if the surgery helped. She also said it won't cure the neuropathy in my foot but I really think it's helping with the new pains I've experienced in my leg. I'm able to go up and down stairs without the pain I had before the surgery. I've been to numerous different neurologists and had many different tests which nothing helped. I'm determined to live with the PIN without taking meds for as long as I can. Mine is worse at night but once I'm up, and put my Birkis on, I'm able to get through the day pretty well pain free. I don't sleep well but I welcome some cat naps during the day. I believe the decompression surgery was my last resort, and I'm hoping it works. So far, I do have relief from the pain in my leg which is not neuropathy but compressed nerves caused by the PIN in my foot. I have an appt. in 2 weeks as a follow-up. There is still some swelling at the ankle but she told me the foot takes the longest to heal because it is the furthest from the heart. I know I'm stuck with the neuropathy in my feet but I'm happy to be rid of the pain in my leg. We are all different, and this is only my experience that I wanted to share.
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03-07-2019, 06:25 PM | #9 | ||
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Thank you Rosie33, that's interesting that it helped resolve the leg pain...
we're still on the quest of finding more info.. but he went back for another consult today (and I'm only getting brief phone call updates). The doc this time shot some lidocaine near the ankle and apparently that was enough to tell him the surgery would work and that instead of 4 sites on one leg requiring surgery it would now just be two sites. Sketchy. The more I read, the more I keep seeing this "study says 80%-90% of patients get relief"... too bad I can't find one. He also gets frequent neck zingers, and sometimes tingling in one shoulder (which to me sounds like a pinched area), but this doc apparently told him that had absolutely nothing to do with the feet. I am suspicious of not investigating the whole body, but I'm also not a doc... He may very well be scheduling the surgery shortly so I'll definitely follow up with this.. |
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03-08-2019, 08:15 AM | #10 | ||
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Here's a clinical trial that this doc is doing, which he asked my friend to participate in:
** Possible surgery next week... |
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