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surgery for neuropathy

Posted by stulerner @stulerner, Dec 31, 2018

Has anyone had surgery for idiopathic peripheral neuropathy

Interested in more discussions like this? Go to the Neuropathy Support Group.

Profile picture for patriciaschulz1950
patriciaschulz1950 | @patriciaschulz1950 | Jun 5 9:41am
In reply to @johnbishop "Hello @megs9, Welcome to Connect. Sad to say there is no real cure for neuropathy but..." + (show)
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Hello @megs9, Welcome to Connect. Sad to say there is no real cure for neuropathy but depending on the cause of the neuropathy pain, surgery may be an option.
-- Types of Peripheral Nerve Damage That May Need Surgery:
https://www.hopkinsmedicine.org/health/conditions-and-diseases/types-of-peripheral-nerve-damage-that-may-need-surgery
The Foundation for Peripheral Neuropathy has a list of treatments that you may find helpful: https://www.foundationforpn.org/treatments/.

Have you been diagnosed with neuropathy? Did they find a cause for the neuropathy or is it idiopathic like mine?

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@johnbishop you are always so positive. My 24/7 pain has robbed me of that last 6-7 months. How do you stay so positive? BTW -love the foundation for Peripheral Neuropathy- so helpful.

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arcuri24 | @arcuri24 | Jun 5 9:53am
In reply to @julkun "@patriciaschulz1950 Oh my G-D. I read what you wrote with great sadness. The medical profession really..." + (show)
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@patriciaschulz1950 Oh my G-D. I read what you wrote with great sadness. The medical profession really sucks. These doctors love to experiment with your body. We are vulnerable and desperate, and they love to exploit that. If 1950 is your birth year, you are my age and I really relate to you. About 10 years ago, I tried stem cells by this money-making machine Dr. You had to pay up-front and also get a non-covered blood test. He did nothing to help me. This Dr. had a radio show that was used to show what a genius he was and therefore get patients. Since stem cells did nothing, I tried so many other fixes. The last was a spinal cord stimulator. A wasted surgery. And we all know the quick fixes, the rub on creams, the special pills, the miracle treatments are all fakes robbing you of your money. Wishing a miracle for you.

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@julkun
I agree with most of what you say. Yes, we are fodder for doctors' experimentation and we feel angry, sad and sometimes cheated by what they do or recommend. Worse yet, they really don't know much about what makes us tick. I am now dealing with a shin shave biopsy wound that has yet to heal and is causing me nerve pain. A pain management clinic and my primary care doctor recommended physical therapy but the aggressive massage and red light therapy only made me suffer more pain as it inflamed the area. Now my neurologist told me not to go to PT and he is going to try lidocaine and possibly capsaicin to relieve the pain. The dermatologist who did the shave biopsy on my shin took off a lesion that did not need to be removed--it was non-cancerous but because I had a pre-cancer earlier, I went along with the removal and still am regretting that. I have celiac disease and related neuropathy--both were very tolerable until this surgery. My neurologist says the wound will eventually heal but 5 months is a long time to wait-especially when experiencing daily pain. Another doctor, a physiatrist, said I could try acupuncture and I may do so as I am at wits end.

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 5 10:53am
In reply to @patriciaschulz1950 "@johnbishop you are always so positive. My 24/7 pain has robbed me of that last 6-7..." + (show)
Profile picture for patriciaschulz1950 @patriciaschulz1950

@johnbishop you are always so positive. My 24/7 pain has robbed me of that last 6-7 months. How do you stay so positive? BTW -love the foundation for Peripheral Neuropathy- so helpful.

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@patriciaschulz1950 to be honest, I have my days that my glass goes from half full to half empty and it is difficult to switch back. My friends here on Connect keep me tethered to reality and I try to focus on things that help me get back on track from looking at some of the beautiful birds landing on my feeder to the rabbits and squirrels foraging for something to eat under the feeder 🙃.

Another member started a discussion on a different website that has a lot of good information if you haven't seen it. Here's the new website posted in the discussion below - https://neuropathyresource.com/.

-- A new resource that could be helpful in summarizing what works
https://connect.mayoclinic.org/discussion/a-new-resource-that-could-be-helpful-in-summarizing-what-works/

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patriciaschulz1950 | @patriciaschulz1950 | Jun 5 12:57pm
In reply to @johnbishop "@patriciaschulz1950 to be honest, I have my days that my glass goes from half full to..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

@patriciaschulz1950 to be honest, I have my days that my glass goes from half full to half empty and it is difficult to switch back. My friends here on Connect keep me tethered to reality and I try to focus on things that help me get back on track from looking at some of the beautiful birds landing on my feeder to the rabbits and squirrels foraging for something to eat under the feeder 🙃.

Another member started a discussion on a different website that has a lot of good information if you haven't seen it. Here's the new website posted in the discussion below - https://neuropathyresource.com/.

-- A new resource that could be helpful in summarizing what works
https://connect.mayoclinic.org/discussion/a-new-resource-that-could-be-helpful-in-summarizing-what-works/

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@johnbishop we love the same things! And agree they bring joy on the worst days. I will check out website u posted.

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julkun | @julkun | Jun 6 9:06am
In reply to @arcuri24 "@julkun I agree with most of what you say. Yes, we are fodder for doctors' experimentation..." + (show)
Profile picture for arcuri24 @arcuri24

@julkun
I agree with most of what you say. Yes, we are fodder for doctors' experimentation and we feel angry, sad and sometimes cheated by what they do or recommend. Worse yet, they really don't know much about what makes us tick. I am now dealing with a shin shave biopsy wound that has yet to heal and is causing me nerve pain. A pain management clinic and my primary care doctor recommended physical therapy but the aggressive massage and red light therapy only made me suffer more pain as it inflamed the area. Now my neurologist told me not to go to PT and he is going to try lidocaine and possibly capsaicin to relieve the pain. The dermatologist who did the shave biopsy on my shin took off a lesion that did not need to be removed--it was non-cancerous but because I had a pre-cancer earlier, I went along with the removal and still am regretting that. I have celiac disease and related neuropathy--both were very tolerable until this surgery. My neurologist says the wound will eventually heal but 5 months is a long time to wait-especially when experiencing daily pain. Another doctor, a physiatrist, said I could try acupuncture and I may do so as I am at wits end.

Jump to this post

@arcuri24 Please be careful of acupuncture. Twice I did acupuncture and it did nothing. BTW, I love their surprise look when you tell them it didn't work. They must have practiced that look for years. Putting needles in an inflamed area on your body could add to inflammation and pain and worse risk infection. Be careful!!!

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arcuri24 | @arcuri24 | Jun 6 3:27pm

I share your concerns as I did acupuncture once on my lower back and was sore for over a week and Tylenol did little to ease the pain. I stopped the treatment after this first bad experience. My appointment is for 6/29 so I have time to think it over. I certainly do not need any more pain. The shin is a very sensitive area with little skin padding unlike the back. I also seem to have hypersensitivity to needles. My neurologist told me to stop PT which I agree with and not to accept cortisone shots from doctors as this could lead to tendon rupture and more pain. My neurologist said my prognosis for healing from this shave biopsy was "good". He also said 22 weeks is not a long time in order to recover from nerve damage. Should I just trust in his insight and recommendations? I really feel at a loss and have encountered so many doctors with zero empathy. Thanks for the advice!!

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