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Comment by __turbobrew__ | Hacker News Reader

How did you go about finding problematic nerves? I have had issues with nerve pain in my left leg for about 7 years now, did the full gamut of MRI s, bone scans, CT scans, ultrasound and saw about 5 different specialists including a neurologist and nobody has been able to help me.

Exercise definitely helps but it doesn’t actually seem to turn the nerves off, just desensitize them.

Sitting is very painful as I get pain in my sit bone and shooting numbness down my leg and all the way into my foot.

I have almost given up and accepted that I will be a cripple for the rest of my life. I live in British Columbia where the medical system is OK, but not near world class and all of the ambitious doctors have went to the USA.

I have a very bad bite which makes me suspect that my whole posture is messed up from the top down.

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A good peripheral nerve specialist will direct the diagnostic nerve blocks, and he prefers you use his pain management guy who he trusts is doing the nerve blocks properly - so you're getting an actual proper diagnostic response from patient.

Dr. Tollestrup in Las Vegas would be my recommendation - I've done 7 surgeries with him so far. To note, every doctor I've encountered isn't perfect - in this case with Tollestrup, he himself hadn't heard of Eagle's syndrome before, arguably because he's a peripheral nerve expert - and the vagus nerves aren't considered peripheral afaik.

An "LVI Global" trained dentist may be able to help you find a proper bite, to create an orthotic that will allow your low jaw to relax/stop guarding. They try to upsell you to full mouth reconstruction, where they actually make money, although the daytime+nighttime orthotics they make for you aren't cheap either. Part of their protocol is also doing a head/neck CBCT scan - which is what incidentally found the Eagle's syndrome for me.

Agreed loceng, diagnostic nerve blocks is a key:)

There are many things that I and the doctors did to figure these spots out (and we're still in the process of locating a few last key spots). Oh, one thing though, I have a hard time giving this info out nowadays, as people often just take the info and run - And am not sure of your gender, but honestly, it's guys especially. Think it's an independence thing, need to feel like they did it all on their own, which I get actually. Yeah, I'm a guy and have this instinct too, but still doesn't change the fact that they take this info and then act like it didn't help at all...

... although, just read loceng's comment. He definitely has part of the path I found too, so this could be enough (diagnostic nerve blocks is a key). But if you're really serious about getting more info, than feel free to provide with a way to contact you. Thanks.

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