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NF1 and nerve pain from hell post-fibroma surgery. Ideas?

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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siouxchef1973 | @siouxchef1973 | Jul 24 3:31pm
In reply to @sueinmn "@siouxchef1973 Is his leg in the healing stage, or is this an older injury? If he..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

@siouxchef1973 Is his leg in the healing stage, or is this an older injury?
If he is healing, this is a sign the nerves are trying to repair/regenerate and it will change over time, and eventually probably go away.
If it is an older injury, a nerve stimulator (TENS) unit, which sends tiny electrical pulses, may be able to interrupt the pain signal and relieve his discomfort.
In either case, he should see his doctor to be checked out to be sure it is not a new problem.

Is his injury covered by workers' compensation?

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@sueinmn
Thank you. The injury is a little over 3 years old. I put a tens unit on his left foot and maybe 30 minutes later he was able to get some sleep. Just not sure where to put the unit especially since he can't feel the leg, just shooting electric pain. He has tried injections, spinal stimulator, nerve medication and is currently on opioid to help with break thru pain but that shouldn't be a long term solution

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insanepain | @insanepain | Jul 24 3:49pm
In reply to @kjoed53 "@insanepain I put your post for your report in the Claude app and this is the..." + (show)
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@insanepain
I put your post for your report in the Claude app and this is the result:
In plain terms: there's clear evidence of nerve/muscle damage in an L4-S2 distribution on the left, but the report can't pin down from the electrical testing alone whether the culprit is the sciatic nerve itself, the lumbosacral plexus, or the nerve roots — partly because there's also a separate, generalized sensory neuropathy in the legs that muddies the sensory data. Sorting this out usually requires clinical correlation: the pattern of weakness/numbness on exam, back or hip symptoms, imaging (like an MRI of the lumbosacral spine or plexus), and looking for causes of a distal sensory neuropathy (diabetes, B12, thyroid, alcohol, hereditary causes, etc.).

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@kjoed53 Thanks for doing that, it does help translate a bit. Hopefully they can narrow it down.

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Sue, Volunteer Mentor | @sueinmn | Jul 24 4:11pm
In reply to @siouxchef1973 "@sueinmn Thank you. The injury is a little over 3 years old. I put a tens..." + (show)
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@sueinmn
Thank you. The injury is a little over 3 years old. I put a tens unit on his left foot and maybe 30 minutes later he was able to get some sleep. Just not sure where to put the unit especially since he can't feel the leg, just shooting electric pain. He has tried injections, spinal stimulator, nerve medication and is currently on opioid to help with break thru pain but that shouldn't be a long term solution

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@siouxchef1973 Maybe the docs can order a nerve conduction test to help figure out where to place the leads? Otherwise, your method of trial and error will have to do.

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kjoed53 | @kjoed53 | Jul 24 4:15pm
In reply to @siouxchef1973 "My son's left leg is paralyzed from a traumatic work accident and is having terrible nerve..." + (show)
Profile picture for siouxchef1973 @siouxchef1973

My son's left leg is paralyzed from a traumatic work accident and is having terrible nerve pain for the past 3 days. Shooting down his leg and into his foot. We have tried so many medications and homeopathic remedies and nothing seems to help the pain. Have you had any luck with anything. Any ideas are helpful

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@siouxchef1973
Has he seen a doctor in the last 3 days? If this is something new then he needs to be seen as soon as possible, whether that's his doctor or an ER visit. Masking the pain will probably not relieve the issue.

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kjoed53 | @kjoed53 | Jul 24 4:43pm
In reply to @insanepain "@kjoed53 Thanks for doing that, it does help translate a bit. Hopefully they can narrow it..." + (show)
Profile picture for insanepain @insanepain

@kjoed53 Thanks for doing that, it does help translate a bit. Hopefully they can narrow it down.

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@insanepain
I use Claude or another AI app to get more clarity on my blood work and test results regularly. I like to know what to expect before I get in the doctor's office. There was a more technical explanation but it was too long to post and hard to understand.

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insanepain | @insanepain | 6 hours ago

So, just to update. I have been taking Lyrica 200mg three times a daily, along with Baclofen 20mg twice daily for months now with no effect on my pain and recently started taking Cymbolta 60mg twice daily. All that does is give me headaches. Yesterday I had a 'Sympathetic Nerve Block' done, which had no effect at all on my pain. Last night the pain in my foot was so bad, and I was pissed off. I paid a $600.00 copay fo nothing! I am not working (haven't all year), and I am desperately trying to get on disability, but it is taking forever and I am going through my savings in the process. Had this nerve block worked, it would have been worth the money, but it didn't. Nothing seems to work on my nerve pain. This is beyond frustrating.

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