neuropathy

Posted by stulerner @stulerner, Dec 31, 2018

Has anyone had surgery for PN? Effective? Where?

Hi @stulerner, I have no medical training or background but I'm sure your question has to be more specific. PN has a lot of different causes and I would guess surgery may be a solution if…and it's a big one, the nerve damage is caused by an injury that has caused the nerves to be compressed or damaged and if surgery is an option to relieve the pressure on the nerve. If your neuropathy is idiopathic like mine meaning they don't know what causes it, I don't believe there is a surgery option to fix it.

I'm hoping others will join your discussion if they have any information on surgery for PN. I did find this article related to decompression of nerves:

NIH — Surgical treatment of peripheral neuropathy: outcomes from 100 consecutive decompressions.
https://www.ncbi.nlm.nih.gov/pubmed/16166462

Liked by peggyella

REPLY

@stulemer, @johnbishop, I hope this reply is helpful and doesn't add confusion. I developed my first signs of neuropathy (numbness and pain in my arms and hands) a couple of years after reverse shoulder replacement surgery. At first, I thought that the discomfort, which kept me up at night, sitting on the edge of the bed crying, was somehow connected to that surgery. A visit to my orthopedic surgeon and some x-rays confirmed that it was not. Instead, he immediately called in a neuropathic surgeon, who confirmed with the help of an MRI, that the culprit was damaged nerves in my neck. As soon as possible, surgery was scheduled and I now have four titanium blocks that keep the vertebrae in my neck from pressing on the nerves.

Unfortunately, some of the nerves were so damaged that it would not be feasible to think that they would heal in what is left of my lifetime. So…the pain and numbness came back in the hands and arms and then the numbness began to show up in my feet, ankles and lower leg. My neurologist still calls it idiopathic because it is not caused by diabetes, alcohol or chemotherapy. And a skin biopsy revealed the additional diagnosis of SFN. He has also added the diagnosis of myofascial pain syndrome to explain the restrictions that add to my overall pain issues.

So….I will let you decide…..is surgery an option? For me, it did help where it could help, if that makes sense. John, perhaps you can clarify where needed.

REPLY
@johnbishop

Hi @stulerner, I have no medical training or background but I'm sure your question has to be more specific. PN has a lot of different causes and I would guess surgery may be a solution if…and it's a big one, the nerve damage is caused by an injury that has caused the nerves to be compressed or damaged and if surgery is an option to relieve the pressure on the nerve. If your neuropathy is idiopathic like mine meaning they don't know what causes it, I don't believe there is a surgery option to fix it.

I'm hoping others will join your discussion if they have any information on surgery for PN. I did find this article related to decompression of nerves:

NIH — Surgical treatment of peripheral neuropathy: outcomes from 100 consecutive decompressions.
https://www.ncbi.nlm.nih.gov/pubmed/16166462

Jump to this post

john: thanks very much. Yes, mine is idiopathic. If it's idiopathic I guess they do not know where it's coming from, so they don't know where to operate.

REPLY

My neuropathy is in both feet. When the pain is too much I soak them in ice water for a few minutes (never timed it, (approx 5-19 minutes) once per day.
This does not prevent pain, but eliminates most of it. Put feet in bucket of cold water, VERY slowly ad ice even 30 seconds

REPLY

Hi. Wow. I can’t imagine putting my feet even in cold water, much less ice water. Besides burning P. and tingling, the PN makes my hands and feet feel extremely cold to the point that they feel like frostbite (I’m guessing that hurts) if the room or weather is too cold. My husband has felt my feet and said they do not feel cold to the touch. But to me, they feel like they are freezing and I have to put heating pads on them to warm them up. What works for one might not work for another. But I appreciate any ideas that might help.

REPLY
@peggyella

Hi. Wow. I can’t imagine putting my feet even in cold water, much less ice water. Besides burning P. and tingling, the PN makes my hands and feet feel extremely cold to the point that they feel like frostbite (I’m guessing that hurts) if the room or weather is too cold. My husband has felt my feet and said they do not feel cold to the touch. But to me, they feel like they are freezing and I have to put heating pads on them to warm them up. What works for one might not work for another. But I appreciate any ideas that might help.

Jump to this post

Hi @peggyella, my feet are always cold too. I have one of those inexpensive hand held massagers with a heat setting and use it once in awhile on my feet and ankles. Helps a little. I've found I always wear two pair of socks since I have to wear compression socks for lymphedema in my legs and the compression socks are fairly thin. I was using a heating pad under my feet at my desk and that also helps a little.

REPLY

Oddly enough only thing that gives me relief to go to sleep is using an ice pack on the pads and toes I move them around and it gives me time to fall asleep

REPLY

Thank you, John. You know, sometimes if I walk barefoot on a tile floor (which I avoid bc it triggers the Arachnoiditis cramps in my feet), I think I just stepped in water. Do you ever feel like that? I have to actually feel the floor with my hand and am truly amazed that ther isn’t a puddle of water. I think a heater with a vibrator would hurt bc even touching my feet increases the symptoms.

Want to hear something funny? In March 2018 when I was going through the Mayo Clinic’s PRC (Pain Rehab Center with Dr. Chris Sletten in Jax) for CSS (Central Sensitivity Syndrome), while I was in physical therapy one day, I ratted on myself. I asked one of my therapy coaches if it was OK for me to wear shoes too big. He looked at my feet and laughed out loud. He said, “Oh my gosh! I thought your feet were awful big for your size! No wonder you trip all the time with your walker! No. You should not be wearing shoes too big!” I explained that if the shoes were even slightly snug on my feet it caused the PN to hurt more. He told me to wear shoes that FIT 15-30 minutes on and then off. I tried it but I need them at LEAST 1/2 to 1 size larger. So I do!

Maybe this will help someone… when the PN has been at its worst and ANYTHING touching my feet hurts… even a sheet over them at night, I made my own protective device. I put a short bed tray over my feet in bed and draped the sheet and blanket over breakfast tray. Then I slipped my feet under the tray so nothing touched my feet. It’s not as bad now. What’s next? LOL.

REPLY

Seeing all the different posts it is obvious that PN is a very weird disorder

REPLY
@stulerner

Seeing all the different posts it is obvious that PN is a very weird disorder

Jump to this post

It sure is! Most people don’t know that there more than 100 types of peripheral neuropathy per the NIH. Each have their own set of symptoms and prognosis. I knew someone at the Mayo Clinic who had PN of the skin. Another local person feels like there’s an extremely tight belt around her waist. Someone else felt like there was constantly water running down his legs. There is neuropathy of the eyes, elbows, under arms, all parts of the body including internal organs (heart, blood vessels, bladder…which I have, and intestines. The peripheral nerves in the seath or the axon within the nerves are damaged and send “false messages” to the central nervous system (brain and spinal cord). For example, if you gently rub your foot, arm, etc., your nerves should communicate to your brain that it feels soft/smooth. Instead, your brain hears, “Ouch! Ants are biting me! They’re on fire! I just stepped on glass or an electric wire! Yes, it is indeed a very weird disease.

Liked by johnhans

REPLY

thanks for the reply. I've had it in my feet for 30 years. Was controlled with different meds but starting last year they don't work anymore or create havoc(Lyrica, Cymbalta). New pain doc suggested 5% lidocaine cream: useless. Recently started CBD tincture which is expensive. Helps somewhat. Still too painful to walk, but at least it seems to prevent the burning pain. There is no accepted dosage. One article I read "2mg was effective for one person, but another was taking 2,000!! As an example of how primitive this field is, the author didn't even say if the 2,000 was effective. Plus I pay $50 for 1000mg, which means that person was spending $100/day. I don't believe that. Can't tell you how many cc's I'm taking, because Have not figured out how many cc's in a dropper. but I'm working one this. Will post this, hopefully, within a within 1-2 weeks when I have used the whole bottle

REPLY

Been using the products for a while now,effective for moderate pain and burning but nothing significant after that and yes it’s expensive!

REPLY
@peggyella

It sure is! Most people don’t know that there more than 100 types of peripheral neuropathy per the NIH. Each have their own set of symptoms and prognosis. I knew someone at the Mayo Clinic who had PN of the skin. Another local person feels like there’s an extremely tight belt around her waist. Someone else felt like there was constantly water running down his legs. There is neuropathy of the eyes, elbows, under arms, all parts of the body including internal organs (heart, blood vessels, bladder…which I have, and intestines. The peripheral nerves in the seath or the axon within the nerves are damaged and send “false messages” to the central nervous system (brain and spinal cord). For example, if you gently rub your foot, arm, etc., your nerves should communicate to your brain that it feels soft/smooth. Instead, your brain hears, “Ouch! Ants are biting me! They’re on fire! I just stepped on glass or an electric wire! Yes, it is indeed a very weird disease.

Jump to this post

Peggy,I really can relate to your post,leave almost my entire body involved in some form of poly neuropathy. It is driving me oof the wall! Doc has tried different meds, can’t seem to control all my symptoms. I am really disheartened because my intestines,liver,and digestive problems have now become serious. Well just thought I would try and communicate with you. Thanks

REPLY
@larryl

Peggy,I really can relate to your post,leave almost my entire body involved in some form of poly neuropathy. It is driving me oof the wall! Doc has tried different meds, can’t seem to control all my symptoms. I am really disheartened because my intestines,liver,and digestive problems have now become serious. Well just thought I would try and communicate with you. Thanks

Jump to this post

Hi, Larry. I’m so sorry about your suffering. It does drive you crazy, doesn’t it? I was on an intrathecal pain pump for 10 years with morphine, then snail venom and last was dilaudid. Before that I used the fentanyl patch, hydrocodone, tramadol, you name it. For me personally, I found that narcotics didn’t help. They just zombied me out. My pain management doctor was also trying to treat the pain in my spine from degenerative disc disease. Eventually, nothing worked for either as far as narcotics go, so I don’t take anything for pain. It tore up my stomach from decades of meds so unless I went back to the pain pump, I can’t tolerate oral narcotics after one or two doses. They cause severe stomach pain and vomiting. That creates an extra problem when I have surgeries.

I know a lot of people can’t tolerate Lyrica or gabapentin (Neurontin), but as an anti-seizure drug with an off-label use of helping nerve pain, it is the only thing that reduces the degree of burning. My feet still tingle all the time and I get intermittent sharp jolts like an electric shock. Have you tried higher doses of gabapentin? Although I don’t recommend it, at least not for a woman my size, the maximum dose of 3200 mg per day helped but was too much for me. It made me fall asleep in my food and I was afraid of drowning in my cereal or soup! LOL. Seriously though, it prevented me from driving for 10 years and I couldn’t carry on a conversation without nodding off, so I had them reduce the dose again and again until I am fully alert and can function well. I take 300 mg 2 to 3 times a day. I’m sure since you’ve had it so many years, you’ve tried everything. I am so sorry and will pray for you Larry.

Peggy

REPLY
Please login or register to post a reply.