Neural thoracic outlet...anyone?

We really have not had that many come through here with TOS type problems. Usually they are just passing through looking for others with the same type of problem & I can understand that. What is the old saying, misery loves company. The other big problem is finding a good experienced vascular surgeon to help. There use to be 2 in Dallas, not sure now how many are there doing surgery for TOS. This is one area that many drs do not want any part of.

Thanks for the input.
Yes, it is most definitely a strange situation. Even for a zebra things are odd. I will be going to St Louis soon to a specialist. I am not eager to get cut. In light of new dx I am thankful I didn't let them work on the rotator cuff. Nobody gets to cut until I am absolutely desperate & utterly satisfied with their explanations.
I was hoping to bump into others with similar stripes...;-)

But you guys are so wonderful I think I will stay. I have already learned so much.

Yes Chartreux,
I have been in PT since April. PT had concerns about TOS early on, so the exercises were geared towards that instead of the rotator cuff. They have been the best source of info and resources, plus they keep me sane...or try.
I have a home tens and they (Pt) do ultrasound. I like that a lot too. All the stretches are very gentle. Pain is not a good thing. I was told to stretch but never to do anything that hurts. You pay heavily for going past the line.

I have searched the web and found some great info...credible sources only. Still isn't the same as talking to another person who deals with this oddity. I try to be very thorough as I want to -- need to-- understand what is happening. No "gung ho" here...more like "heck no" when they get cut happy. I am not there yet and not sure I ever will be. I prefer to keep my original equipment whenever possible.

I experience firebolts race through my neck/arm even if I am not moving. The spasms are fascinating to watch but the cramps are a bear and wake me up. Touching the lump at my collarbone provides the most exquisite sensation...not a good one though. It is so hard to describe. And problems with my hand as well. My hand looks funny and my grip is gone, just gone. I have numb spots on my arm that do not turn red in the shower, they will not blanch even when touched.
Just weird things.
Anyhow, thanks for the input. I hope you are healing.

I've been diagnosed, undiagnosed, re-diagnosed with TOS over the years.

First, there's both vascular TOS and neruo -- a way to tell the difference is by seeing if one's wrist pulse changes when the TO is constricted (such as when raising arm).

Note, though, that one can get a false positive for V-TOS depending upon the tilt of one's head.
And given this, I wonder whether there is also a false positive for a N-TOS?
You should thus see if you get the same symptoms if your head is tilted towards the raised arm or tilted away.

Note also that constricted upper pectorals can cause similar symptoms and those can be stretched out. If you spend a lot of time at a desk or otherwise hunched over, that can lead to the upper pecs getting tight.

Thank you for your responses. You guys always teach me something.
Radial pulse disappears with nearly all of their positional tests. Addison, ROOS etc. EMG showed minimal delays. At first they said normal but the second one showed minimal.

That's a good idea about the diary. I have switched to plastic when I can, as I hate losing my favorite mugs. I never considered falling to be part of the situation though...can you explain please?

There is neural involvement but I think some vascular as well. My hand is always cold and swells. Posture is not a major factor. Being raised by a strict German woman and years in the Army have cured me of slouching. Plus a forward head position stokes the headache.
I cant find much info on the weird headache that never goes away.

PT and doc mentioned a "double crush" at cubital tunnel. There is compression at pec minor where it meets the anterior deltoid. The anterior deltoid is actually ripped out of the greater tuberosity. The lump looks funny...like a bad Popeye movie.

I am working on getting insurance approval to see the specialist in St. Louis. I am scared and anxious to at least find out exactly what I am facing. Washington University School of medicine (connected to Barnes Hospital) has an entire center dedicated to this situation. So I am westward bound one way or another.

Thanks again for your input. I hope you have a great day.

Hi Pin,
Sorry to hear about your situation, but its great (in a sick and twisted way) to have someone to talk to. This is all so weird and until I am able to get to the specialist...insurance has to fight every step first.... all I get is "I don't know,' or "that's odd." driving over an hour to get that response is frustrating. I am no longer in PT and the Dr is waiting to see what the specialist has to say. My new zip code is limbo.

I have done research on the venous category and I seem to have some issues there. My skin is shiny and hand does swells some. But I am not a Dr.
I do know that there is a nerve issue in the elbow....feels like road rash inside and my pinkie and half ring are either numb or tingly all the time.

I also messed up the superficial branch of the radial nerve. I fell & broke my wrist but the docs never did anything and sent me back to work. Its really wild. I can numb out part of my forearm, my thumb and #2,3 top just by lightly brushing over the side of my wrist.

At times, my skin crawls as if there is something underneath. I have bad cramps from the hand to neck. And fire that flashes through with a vengeance. My ear and shoulder become close friends REALLY quickly sometimes.

I try to do the nerve glides but they say don't go into pain...well that means don't raise my arm at all then. I have no grip and drop stuff constantly....any of this familiar? Depending on how I position my arm depends on what goes numb and what tingles. there is no happy medium that I can find. laying flat has become impossible as the pressure in my neck is too much. I asked about that and got "gosh that's odd."

I have spots on my shoulders that are numb and wont turn red even under hot water. It helpful when I have to get a shot as I never feel it... if they go into the upper arm.

Its so hard to explain what it feels like. its different then anything I have ever encountered. I have this lump under my collarbone that screams if touched...or if I move my arm wrong. but inside the scalene triangle is another huge lump. when I touch it well, its alien. I can tell its me but the sensation is so out there. Painful yes, but weird. there are so many parts (voices) that scream or yell all the time. I cant tell you what hurts sometimes, its all so much ALL the time.

My chest wall and armpit is also involved (pec minor syndrome?). Pretty much from the ear down to fingertips and all areas in between....I am just a ray of sunshine! Headaches that crawl from the base of my neck over the ear and onto forehead/cheek. PT found that traction relieves the headache but as soon as you stop, boom its back.

I feel so alone. I often feel like I am speaking a different language that cant be translated. I don't know how to explain what is going on and none of the medical folks have any info or will tell me anything as they don't know, or aren't direct support personnel. I finally got the doc to understand that I hurt and then I cant take the meds he prescribed...but opiates don't work from what I have read. what are they doing for your pain?

What have they said to you about a prognosis? nerve pain resolution? going back to a regular life?
Sorry I just dumped a bunch of questions on you. I hope you have a good day and that they are able to patch you up. You will be in my prayers.

You are not alone, it's awful I know, but you aren't alone in this.

When my pain was really unbearable I went back to the doctor and they put me on Lyrica (pregabalin), it takes around a week to start working, but its worth it. I weaned myself off it when I was going in to have cortisone nerve blocks so I could see how well they worked, but (long story), I decided not to have them because I was too scared.

The nerve pain at your elbow doesn't necessarily mean it is entrapped there, I experience pain all along the nerve, all of them in fact, radial, medial and ulnar. Ulnar is my numb one, which I think could still be part of the C8 nerve problem. It also goes numb from time to time, and kind of cold, then sometimes hot. Fun. I was trying to document my symptoms this afternoon actually, to see if I could work out if I am improving or not, sometimes it's hard to tell - but I gave up because I realised there was too many of them. It's either burning, numb, pins and needles, stabbing, or cold - and it can occur anywhere on my hands, up my arms, my pecs, and my neck and shoulders, the shoulder blades still go numb. Today was a bad day, I've just had acupuncture though and it always hurts worse for a couple of days at least. Then it feels a bit better for the rest of the week.

Laying down is often worse, and brings on the pins and needles/numbness feeling in my hands so that sounds normal to me. Nighttime brings on a bit of swelling in my hands which contributes.

I don't have lumps on my scalene muscles but I do have very tight fascia there that almost feels like a hair under the skin. It's odd, but that's what it feels like because it's pulled so tight. That area is horrible to touch though, I nearly jump out of my skin and then vomit.

I've also got pain under my armpit that comes and goes, I can't tell if this is the TOS or the T1 swelling which causes the same symptoms.

Massage helps at the time, but it is short-lived relief. Try heat, a lot of heat, wheat packs on your neck and shoulders to loosen it up as much as possible. I have a whole range of neck stretches that I do, as well as the nerve glides, I do them within tolerable pain limits, generally by the end of 20 reps, the nerve is not as angry, but let pain be your guide. I have to stretch my pecs as well, but I have been overdoing that, as it compresses the brachial plexus (the thing that hurts in your neck) and makes my hand tingle and go numb. Apparently you have to stop if it does that, I usually just keep going, but I will change that starting today and see if that helps.

Also apparently, the key is sorting out your posture, mine is terrible, probably why I got the neck injury in the first place. So I have a lot of work to do there. I saw a specialised sports doctor for diagnosis, he was quite sure that's what I had from the etiology and my symptoms, no tests or anything (apart from an MRI and CT spect scan to diagnose the neck injury). My understanding is that it's more of a clinical diagnosis so scans may not show anything for neural compression. He told me that it will improve with the resolution of the neck injury, and posture fixing. I am trying to be as patient as I can.

I can totally relate to not being able to plan anything, I have gotten to the point where I just have to accept that I don't know whether I can do things from hour to hour (sometimes it gets worse and then better and then worse again within minutes). It really sucks. You are not crazy, it is not something that all doctors will know much about but it is real, there is more and more recent research demonstrating this. Hang in there, we can do it together :)

Pin, thank you for your kind words. You cant imagine how good that made me feel. together

Posture is a big thing in the research. My pt says my posture is great...years of military service and a strict German mother. I am blessed there. You have the extra issue with your leg being shorter. Maybe posture retraining will get you back on track quicker. I sure hope so.

I found that my pain dropped greatly once I quit raising my hand over shoulder level. I refused to do the exercises that put me in pain. Simple as it sounds but if it hurts I wont do it...not for 20 reps 3x a day. I have noticed a vast difference. It did not make my dr happy when I told him, but he hadn't figured out the problem at that time. I was in vigorous pt for rotator cuff damage and frozen shoulder for 6 months. I was in a fairly physical job for the first three months, all just aggravating the injury even more. They thought my shoulder was frozen so they did a manipulation in Oct. I know, not the best choice of treatment for tos.This experience has taught me so much about the human shoulder and the lack of knowledge in our medical field.

Do you find that you "pay" for movements? Pt can get me through rom if they are slow and gentle, yes I cry but we can get there. unassisted, I can stretch my arm out into one of the exercises if I take my time. It is uncomfortable and at times massive pain. But then once its back in a neutral position it screams.

You are right, laying down is not a good thing. I tend to fall asleep sitting up. I have pushed my bed into a corner so that I can use the walls to support me.

The nerve pain just pops up anywhere at anytime and at any level. I can be in the middle of a conversation and all of a sudden I am gnarled up in pain from a flash of fire. Thankfully it doesn't last long...the firebolts don't that is. The ache never stops. I have a constant 4 to 5 grumble all of the time with pain spikes into 9's plus. except for having a scalene nerve block during the manipulation I have not had adequate relief. the block was wonderful. I didn't even know I had a shoulder. My arm fell out of the sling and hit my leg as I bent over. I didnt know it was my arm until I looked. For 8 glorious hours I didn't feel a thing.

I do the door stretches to keep my brachial plexus flexible...the ulnar and radial nerve glides are painful. I am learning the different nerves and can identify which ones are acting up. I can trace them with a marker some days. Sometimes there are too many voices screaming, I cant focus enough to know which one is misbehaving. Once my arm is above shoulder or away from my body it goes numb. It began as just the hand but now its past the elbow. I use the ball to stretch out my collarbone area. Its not sooo bad. and of course neck stretches.

The last thing Pt told me was do not go into the pain. These stretches are supposed to be gentle. I find progress is excruciatingly slow. two months and I am not even past the initial hand/arm position. I use lots of heat and can sometimes get a bit of relief with a tens unit. I can knock back from elbow to fingers if the pads are placed right. I made up several rice bags that I microwave and apply to my shoulder. I have found that directly over collarbone area and in the armpit give good results.

I have found that I need lots of tools as every day (every hour) is different. Sometimes I can stand in a hot shower and ease up, other days I cant tolerate heat at all. same with ice. I take muscle relaxers but again same situation. Some days they might as well be tic tacs. I don't know if this is typical. Do you have any swallowing issues? I find that I have cognitive issues now as well...though that may be related to no sleep.

The Ortho did say that he felt I had a double crush....where the nerve is bad at several spots. I am an over achiever!

My email is listed on my profile. please keep that handy.
Thanks and best wishes.

I know what you mean about sometimes not being able to tolerate heat - sometimes I have to take an ice pack to bed for my hands because they feel like they are on fire. They often buzz or the skin goes numb overnight, It woke me up all night last night. Very annoying.

It doesn't sound like posture is an issue for you - do they think it might have been triggered by the shoulder injury? Maybe it pulled things too tight in there?

Yes, I know what you mean about paying for certain things - sometimes after you do a stretch or something, moving it back to where it's meant to be actually hurts more. Mine usually quiets down after a while, but it's scary while it's happening. Most days I can't dry my own hair with a hairdryer...

Has yours improved at all with physio? I would definitely try acupuncture if you can. It did a much more efficient job of loosening up all the offending muscles for me. For me, it's quite painful for the first day or two, then it starts to get better. But it has helped more dramatically than just stretching, massage, and heat alone.

Are you taking anti-imflammatories? I took them for two months, it was hard getting off them as they were helping, but I was starting to get worried about being on them too long, especially with my other health conditions and medication.

Definitely get some nerve pain medication if you can take them, the regular meds will not work. I was mentioned pregabalin by three different health professionals, so it must be a well tolerated medication frequently used for this kind of pain (either that or the rep did a good job!). It really helps with getting some sleep too.

Another way some drs will check for TOS is raising the arm like the statute of liberty. This is for those that have the extra rib & having issues.

If a person has back problems there is very good chance they will not be able to lay on their stomach. Most of us can no longer do this, the pain is just too great.

Do try the nerve pain meds if you can - they are helpful, I've been off them and I noticed the difference, even though I was on a small dose. I've been sleeping terribly for the last few nights, the hand numbness has been waking me up every half hour or so. I think it is because I have been forgetting to do my wrist stretches, or at least I hope so, because otherwise it is getting worse again...

Sorry, I'm ill and my coughing is getting worse...will try to come back later...I did get some sleep last night but still lacking...