Nerve Pain from HELL

Posted by insanepain @insanepain, Jun 22 3:45pm

I have Neuralfibromatosis Type1. I had a L3/L4 fusion in 2020 at the apex of my Scoliosis to relieve back pain. That went fine. With my condition I have several internal fibromas inside my body. One of which was on my L5/S1 Vertebrae that was pinching a nerve sending pain down my left leg. It was inside a myelin sheath, and when the surgeon operated on me in August of 2025 he had to quote: 'Sacrifice a nerve' end quote. I woke up to my left leg numb, dead, lifeless.. I thought it was nerve block, but no. I was told it was permenate. I could move my leg and foot, just couldn't feel anything. Fast forward a few weeks after the surgery. From the knee to my ankle still feels numb, like Novocaine when you go to the dentist. When you get home and you're smacking your face in the mirror. Know what I mean? You feel your hand touching your face, but you don't really feel it. That's what my leg feels like. My foot however is hypersensitive and in constant pain. Just touching it is excruciatingly painfull. I cannot walk on it, or even touch it. Putting a sock on is beyond painfull. Plus I get these electric pulses that are rythmic, that intensify the pain and take it up a notch. It's now Insane Pain. They gave me muscle relaxers, pain pills, Pregabalin (it was Gabapentin), and nothing works. My foot is in CONSTANT 24/7 pain, and the jolts I get make the pain 10X worse. I can't sleep, I can't even walk on it. I hop around on one foot with my walker, and can't do anything. I can take pain, but this constant nerve pain is totally insane. I don't know what to do. Seeing 5 Dr's that don't know what to do either. All the mends they gave me for Neuropathy do NOTHING.

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insanepain | @insanepain | 6 days ago

In reply to @lisalucier "Hi @insanepain - would you by chance have the citation for or link to this article?" + (show)

@lisalucier Sure thing! It's basically a general search. I have lots of time on my hands to do research. lol https://www.bing.com/search

janhartland | @janhartland | 5 days ago

In reply to @insanepain "@ccchang Not really sure, I am hopeful and mainly guessing. I have done TONS of research..." + (show)

@insanepain I’m having spinel decompression L1-L-5 in 4 weeks. Pain is horrible in the lower back and front hips down. If you’ve had the surgery was ineffective? Anything you’re doing to help prevent incontinence? I’m going every 2 hours to help prevent it. Thanks. Jan D from Texas.

claymc | @claymc | 5 days ago

Hey, I had l5s1 full herniated disc and disectomy on 03/2017. The disc part of the surgery was successful, but the surgeon said there was a lot of scar tissue on the sciatic nerve and he scraped it off. I came out of surgery with the same burning excruciating pain in my leg and foot just like you described. A light breeze was severe pain. It got better over 3 weeks, but far from healed. I experience all the nerve symptoms every day and the numbness fat feeling is constant from mid thigh down to toes. The calf muscle is some of the worst with burning and cramping. I could go on and on describing it all . As for what helps, lidocaine cream, norco and gabapentin. Ice packs are great alternative to drugs, and focused breathing and meditation. About a year ago my PT got me strengthening and stretching. A lengthening exercise that targets the front of my hip by laying down and pressing through the heel into a small soft ball or anything, even a band or strap, opened up that area and I get a flush of blood flow and less nerve pain temporarily. Also standing hip hike strengthens the whole system. I stretch every way possible around my hips and do a lot of core exercises, with the bridge pose and front lunge for hip flexors, we are all built different with weakness and nerve or joint damage in places. But I am getting some minimal relief, and hopefully it leads to a better functioning environment for the nerves to heal more. Good luck.

cori | @ccchang | 5 days ago

In reply to @insanepain "@ccchang Not really sure, I am hopeful and mainly guessing. I have done TONS of research..." + (show)

@insanepain Ok, thank you. I am same as you - numb leg and foot and pain (especially at night during sleep). FYI, I am taking supplements - Alpha Lipoic Acid, B-Complex and Magnesium Glycimate, as I read on this forum that those are good for nerves. I also sometimes soak my feet in warm water w/ magnesium flakes (which I think is similar to Epsom salt). When the pain is really bad at night, I get up and take a Tylenol. Otherwise, i try to just bear it. I hope your/our nerves regrow!

Lisa Lucier, Moderator | @lisalucier | 3 days ago

In reply to @insanepain "@lisalucier Sure thing! It's basically a general search. I have lots of time on my hands..." + (show)

Thank you, @insanepain. I see from the link you shared, you were citing a search engine AI overview. These can be a helpful starting point. However the information may not be accurate. By clicking the link icon, you can review where AI got its information and check the accuracy of the information.

When you ask a question on the internet now, it looks at the data and then gives back answers or suggestions in plain language. But the information AI assistants give you isn’t always 100% accurate—it depends on the data it was trained on and how your question or prompt was worded.
Here's more information on AI on how to use it safely.
• Mayo Clinic Connect changes health care and advances science What is Generative AI? What does this mean on Mayo Clinic Connect? | Mayo Clinic Connect https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/what-is-generative-ai-artificial-intelligence-what-does-this-mean-on-mayo-clinic-connect/

insanepain | @insanepain | 3 days ago

In reply to @lisalucier "Thank you, @insanepain. I see from the link you shared, you were citing a search engine..." + (show)

@lisalucier I see what you mean. I have been doing a lot of general research on my own, online of course. I came across that and wondered if anyone else had a similar reaction to food and their Neuropathy/nerve pain, that was not related to Diabetes. I'm at a point that I am grasping at straws, trying anything and everything that could possible help me and others like me. I will take your advise in furure reserach. Thanks!

Lisa Lucier, Moderator | @lisalucier | 1 day ago

In reply to @claymc "Hey, I had l5s1 full herniated disc and disectomy on 03/2017. The disc part of the..." + (show)

@claymc - welcome to Mayo Clinic Connect. Glad to hear the disectomy part of your surgery was successful. That is unfortunate about coming out of the surgery with burning, excruciating pain in your leg and foot.

Thanks for sharing the strengthening and stretching that has been helpful to you, as well as some of the over-the-counter and prescription treatments.

What is the next step for you if you do not get the pain relief you are seeking, claymc?

cori | @ccchang | 4 hours ago

In reply to @marcd2k "@insanepain Hello, I'm sorry to hear about your pain. I have been searching for 3 years..." + (show)

@marcd2k Hi. So your spinal fusion last Nov took care of your pain? Sounds like you're happy with the surgery? If so, can you please let me know the surgeon and hospital? Also, how did they find the collapsed disc, was it through an X ray or MRI or other?