[zebus]

I have a question I've been personally researching to try and get answered but have not been able to, hopefully someone knowledgeable like shengggmd can help me out here.

Basically I have a very weird clinical background when it comes to nerve entrapment, while my TOS symptoms are by far my worst and account for 90% of my daily woes, I also have multiple other entrapments that would basically almost never be seen together in one patient, and especially not a 25 year old. I've developed cubital tunnel in my right arm recently, my NCV shows slowing across my radial tunnel, then I have multiple lower extremity entrapments.

Docs suspect I may have something weird/rare going on that would cause entrapment like HNPP, but as of now that hasn't been decided, but if not I just have really bad luck or anatomy :P

Anyways, this has led to my question I'm trying to get answered. In a normal person without typical TOS, would there still be pressure on the nerves as they pass through to the arms, just not enough to cause any problems? For ex, even a normal healthy carpal tunnel has 30 mmHg of pressure, which is no problem for a normal person and they wouldn't have carpal tunnel till pressures reached >100, but in someone with a genetic condition like HNPP (increased nerve sensitivity) even these normal anatomical pressures cause symptoms.

So I'm trying to see if a similar phenomena is possible with the thoracic outlet or pec minor space, do the scalenes and other structures still put some pressure on the nerves in a normal person, or is the nerve nowhere near being entrapped? I mean is the nerve normally pretty tight fit or is it more like a tennis ball going through a hulahoop lol.

They are telling me I need surgery, all the tests for thoracic outlet are positive, but I'm just trying to make sure I don't do anything I'll regret should the root cause of my problem not be so simple. Like I don't want to get my normal thoracic outlet hacked up if it turns out I have something like HNPP, because from what I read surgery doesn't help in these patients.

[NerPain4]

Hi,
what is HNPP?

P.S. I think you might need to ask a hand specialist not a vascular surgeon. There is someone like that in the Bay Area.

[zebus]

Originally Posted by NerPain4

Hi,
what is HNPP?

P.S. I think you might need to ask a hand specialist not a vascular surgeon. There is someone like that in the Bay Area.

HNPP is a disease where your nerves are way more sensitive to pressure and damage than normal. Basically in someone with HNPP, where problems like TOS and carpal tunnel are a problem of putting too much pressure on nerves from enlarged muscles and tendons, HNPP is a problem where the nerves can't handle the pressure because they are more sensitive. Basically their nerves get entrapped very easily.

Like I definitely have an entrapment at the anatomical site of TOS, but like I said I also have other nerve problems as well to the point I question if my TOS isn't due to some underlying nerve issue like HNPP. I'm tempted by surgery because it's about to get bad to the point that I can't work which isn't an option and my parents health insurance is up on me in like a month, but I also don't want to do anything I'll regret..

So I was just curious to see if a person with an issue like that could have TOS with a normal thoracic outlet, or if that is impossible and TOS could only be caused by conventional means like RSI. There are tons of studies out there showing how things like diabets, hypothyroid, HNPP, and more can cause common entrapment like carpal and cubital tunnel, but I can't find anything in regard to TOS.

Basically I was healthy until I was 25 then within months of each other I developed symptoms of TOS, in addition to numbness in my other thigh (meralgia parethesica, another entrapment like TOS/carpal tunnel but in thigh), as well as burning and numbness in the bottom of my feet when standing (tarsal tunnel), and then a few weeks ago I started having symptoms of cubital tunnel in my right arm.. yea that's what I've been dealing with. Only reason my symptoms don't match up with HNPP is because I don't have carpal tunnel which is found in basically all HNPP patients due to it being the easiest nerve entrapment to get antomically.

[Jomar]

The useful sticky thread has some info links about it ( they are from years ago) but a web search will bring up the most recent info I think.

[LiveLoveandTrust]

From what I understand, there is something called double crush (or multiple crush) syndrome. What happens is that a nerve that is impinged is much more sensitive further down the nerve. Fix the biggest problem and the others calm down on their own.
For example, I have a minor impingement in my neck and carpal tunnel but it is expected that once the TOS is fixed that my carpal tunnel symptoms will disappear. That's what I've been told anyway. So far, it is not looking like my neck impingement is causing any issues at all.

[zebus]

Originally Posted by LiveLoveandTrust

From what I understand, there is something called double crush (or multiple crush) syndrome. What happens is that a nerve that is impinged is much more sensitive further down the nerve. Fix the biggest problem and the others calm down on their own.
For example, I have a minor impingement in my neck and carpal tunnel but it is expected that once the TOS is fixed that my carpal tunnel symptoms will disappear. That's what I've been told anyway. So far, it is not looking like my neck impingement is causing any issues at all.

Good point, I think that might be the case with my right cubital tunnel as well since it just randomly appeared a year after my TOS symptoms started. After talking to my doc about it I've decided to go along with surgery to see if it helps since my symptoms are severe, and the way I understand I've got obvious signs such as loss of pulse with maneuvers that wouldn't be seen if you just had some nerve issue, so hopefully I'm just dealing with classic TOS and this fixes it.

Like it is true that TOS isn't my only problem, but I think I'm being paranoid trying to stick them all together. Worst case scenario, I get the surgery and it doesn't help and I just move on from there with just a few weeks of pain to complain about. Best case scenario I'm cured and I put this whole year of misery behind me and move on with my life (besides posting here with you guys ofc )

I mean my only debate is getting a second opinion, but my insurance has me on a clock since my coverage changes at the end of December, and my doc from what i read is one of the top of his field, Dr Pearl. So I'm thinking just go for it. You guys with agree?

[LiveLoveandTrust]

Originally Posted by zebus

Good point, I think that might be the case with my right cubital tunnel as well since it just randomly appeared a year after my TOS symptoms started. After talking to my doc about it I've decided to go along with surgery to see if it helps since my symptoms are severe, and the way I understand I've got obvious signs such as loss of pulse with maneuvers that wouldn't be seen if you just had some nerve issue, so hopefully I'm just dealing with classic TOS and this fixes it.

Like it is true that TOS isn't my only problem, but I think I'm being paranoid trying to stick them all together. Worst case scenario, I get the surgery and it doesn't help and I just move on from there with just a few weeks of pain to complain about. Best case scenario I'm cured and I put this whole year of misery behind me and move on with my life (besides posting here with you guys ofc )

I mean my only debate is getting a second opinion, but my insurance has me on a clock since my coverage changes at the end of December, and my doc from what i read is one of the top of his field, Dr Pearl. So I'm thinking just go for it. You guys with agree?

I am more of an aggressive person when it comes to medical care. I would prefer it to just be fixed if it is possible. In your situation, I would go for it. If it feels right to you, it is probably the right decision.

[Seeman]

Originally Posted by zebus

Good point, I think that might be the case with my right cubital tunnel as well since it just randomly appeared a year after my TOS symptoms started. After talking to my doc about it I've decided to go along with surgery to see if it helps since my symptoms are severe, and the way I understand I've got obvious signs such as loss of pulse with maneuvers that wouldn't be seen if you just had some nerve issue, so hopefully I'm just dealing with classic TOS and this fixes it.

Like it is true that TOS isn't my only problem, but I think I'm being paranoid trying to stick them all together. Worst case scenario, I get the surgery and it doesn't help and I just move on from there with just a few weeks of pain to complain about. Best case scenario I'm cured and I put this whole year of misery behind me and move on with my life (besides posting here with you guys ofc )

I mean my only debate is getting a second opinion, but my insurance has me on a clock since my coverage changes at the end of December, and my doc from what i read is one of the top of his field, Dr Pearl. So I'm thinking just go for it. You guys with agree?

Last year I was diagnosed with Cubital Tunnel Syndrome at my left elbow. My main complaint at the time was pain above my elbow on the back of my arm. I also had numbness in my forearm and all my fingers, though my 4th and 5th digit were the worst. Even though I didn't 100% agree with the doctor, he was able to talk me in to surgery to release the ulnar nerve in my elbow. If I had known the recovery was nothing like what he claimed, I would have definitely gotten a second opinion. This was after he completely disregarded my concern that my problem was that of developing TOS, as he said it was impossible for that to be the reason for Cubital Tunnel Syndrome symptoms.

Anyways, after surgery I went through rehab for 1 month, during which I developed the exact same problem on my right side. This was followed by a recurrence of issues on my left side. Long story short, my opinion is my TOS was causing problems elsewhere, as I decided to go to another doctor and was diagnosed with TOS (with complete occlusion of subclavian artery in several positions). I also had issues with my subclavian vein, with some instances of swelling that really freaked me out. My TOS was bilateral, with my right arm ending up worse, even though my left was the first with symptoms.

That being said, at the very least I would ALWAYS get a second opinion. I regret not doing so from the beginning.

I also believe a major component in my development of TOS was shoulder instability. I have a history of shoulder impingement. So even TOS has underlying causes that need to be addressed. Unless somebody told me my life depended on surgery to address TOS, I wouldn't have it done. Of course, that's just my opinion.

[mspennyloafer]

interesting thread, i havent heard of HNPP

but i have developed neuropathy in my legs..i think its sciatica or something like that in addition to my stubborn tos

also if i do an exercise which irritates my t-spine too much i can get tingling in feet and/or hands

this all came about very suddenly for me at 27...now 29

[chroma]

I have a different perspective to contribute. In "Pain Free" by physical therapist Pete Egoscue, he talks about how misalignments and misuses in one part of the body can put strain on other parts of the body causing symptoms such as pain and nerve compression. If you want to read this directly, it's in the first three chapters of this book:

http://www.amazon.com/Pain-Free-Revo...dp/0553379887/

I also bring it up because I experienced it directly. I used to regularly get severe pain in my left forearm and moderate pain in the left wrist. Upon doing his stretches and movement exercises, these symptoms abated. Was I doing wrist and elbow motions? No. I was doing things to improve the hips, shoulders and back. This in turn improved how I used my body and alleviated unusual stresses due to poor biomechanics.

However, your case is certainly fairly severe and I'm not trying to imply that you don't have some other underlying medical condition that needs serious attention.

If you want a non-surgical program to try before surgery, I can personally recommend:

-- Weisberg stretches (~3 mins 2 X per day)
http://www.amazon.com/Minutes-Pain-F...dp/0743476476/
-- Katy Bowman stretches (~5 mins) "Aligned and Well - From The Shoulders Up by Katy Bowman"
-- Somatics (see Thomas Hanna, Martha Peterson, Christa Rypins) (~7 mins)
-- "The Quieting Reflex" by Charles Stroebel for reducing muscle tone. (~5-15 mins per day, but integrated into the day--almost feels like 0 mins)
-- Egoscue program (~30 mins a day depending on what exercises you do)

Obviously, time is the major con for the above. The pro's include:

-- no surgical risks
-- no scar tissue
-- low cost
-- treats the whole body

You'd want to give it 1 - 3 months to evaluate what it can do for you and what is left over when you've fixed what you can on your own.

But I'm not proposing that you should delay the surgery. That is obviously something only you can decide.

Good luck.