I amnew to this site and have noticed a lot of people saying they are battling crps and tos. i finally google this and it says its thoracic outlet syndrome. is this the tos you people are referring too? i have never heard of tos just like i had never heard of rsd/crps before being diagnosed. i have crps type2 stage 3.

so i google tos and click on the first website. (((since i dont have enough posts yet it will not let me post the website here.)))

i then click on the symtoms and i have most of them. for instance my pinkys and hands are numb half the day sometimes. my docs say its because i am in bed 24 hours a day. my hands are swelled. mydocs say that is due to the crps. my shoulder and neck is tight and painful. docs say due to being in bed. i have headaches and chest pain all the time. docs say the chest pain is due to the acid relux and i should get the surgery to tie the stomach in place. (hiatal hernia). i have constant ear pain and again the docs say this is due to crps.

so do i need hiatal hernia surgery or do i have tos??? things that make you go hmmmm

mike

Mike

here is our TOS = Thoracic Outlet Syndrome forum at NeuroTalk

http://neurotalk.psychcentral.com/forum24.html

We have a TOS forum here on NT too, the useful sticky there has many of the top info sites listed so you can get a full idea of the many symptoms.
the useful sticky thread - {see post # 1 for a crash course}
http://neurotalk.psychcentral.com/thread84.html

Usually with TOS there is a job or work connection, or an injury of some sort like car accident, sports or falls, something that affected the upper body structures.
If you did have any of those factors I do suggest trying some sort of body work or adjustments and such just to make sure things are in alignment. Might be a simple fix or some help at the very least.

Some do have bony anomalies or extra cervical ribs that cause the impingement problems.
Also poor head, neck, shoulder postures can cause or be a factor with TOS.

if RSD is affecting the upper body {arms /hands etc} it is hard to tell the difference sometimes until you learn about both and read on both forums.

An advanced PT or expert chiro should be able to give you a full evaluation and give you some idea if you could have TOS also vs only RSD.

You pretty much have to ask them to check you for TOS and see how they respond - either they will say I can do that or give you a blank look LOL .
TOS is a supposed mystery to many - kind of like RSD is.

I have the RSD/TOS combo platter.
Dr Schwartzman called it a "very common injury" , I was "T-boned in the drivers door by a Semi, in my pickup. I braced, and took the hit on my elbow.

Since Jefferson is a university hospital, and at that moment I was the only one in who had RSD/TOS, he would parade a new group of students in to see me every twice a day.

A simple test for TOS, is this.
Stand in front of a lighted mirror, (your bathroom will do).
Put your hands up, as if someone says "Stick em up".
Now, this is tough to describe, but you hafto push or roll your shoulders as far back as you can.
Look at the palms of your hands in the mirror.
If you have another person available, they can look, and also feel your wrists for a pulse.

If you have a "good" case of TOS, this position will stop the pulse @ your wrists.
Your hands will go numb due to nerve impingement. They'll also turn white, due to lack of blood flow. (that's what you're looking for).
Let your hands down, and you'll see the color return.

You see, TOS is a series of injuries that closes up the Thoracic Outlet, and squeezes the nerves and blood supply to your head, neck and arms.

A normal sitting position for someone with this ailment, is to roll, or curl the shoulders foward, and let your hands lay in your lap.

I was a master plumber when I got injured, and muscular. Dr S told me that I would loose all that, especially the sheath of muscles that covered my shoulders/blades.
Back then, you couldn't feel my shoulder blades, now, they stick out. I can easily feel them.

Again,
I'm not a doctor, this is my "simple" education from watching my doctors.
You need a GOOD Neurologist, and Good hand / arm surgeon / specialist, or a thoracic surgeon to diagnose this. (It seems to me, that they should be getting much better at it these days).

The numb arms, fingers, the HEADACHES, the absolute DEAD ARMS in the middle of the night...
And, of course the pain. I hope you don't have it. If you do, don't be quick about any surgery....
The muscle atrophy, will eventually give you room.
And, another side effect you'll notice if you have TOS, if you use your arms for anything that requires strength, say push ups, or pull ups. It would flare you right up! Possibly trigger a headache.

I have a nightmare story about a test a thoracic surgeon put me through once, before I met Dr S.
But, due to my TOS, I can't write much more at the moment without a break.

BE well,

Pete
ASB

i did the mirror test and sure enough that happened as you said. i could barely get my hands/arms in the air for that test. i know my pain doc asked me to raise my arms last time i was in and i couldnt raise my arms past level so maybe that is why no doc has noticed before. right now it seems to be more of a nuisance as far as the constant numbness and pain in the neck and shoulders. i was mainly wondering if this hurts the heart much as i am out of breathe so much these days especially if i lift something heavier than 10lbs. it can take 20 minutes for me to catch my breathe after lifting somethin so light.

mike

the extra rib thing is something i have. at least that was the excuse the surgeans used when they put my scs lead on.xrays later showed the lead on t7 and it was suppose to be t8. so now i have a lamentectomy at t7for no reason because they later moved the lead to t8 3 months later.

another reason i might not have been told i have tos is the pain docs say you have to treat what is most painful which is my crps (legs,arms,cheeks).

thanks for the info

mike

That's a question a dam GOOD question for your doctor, Mike!

Glad that little test helped, although I'm sorry you got a "positive" result.

While you say you have that extra rib, (in your next post), some of the xray things you speak of are a bit over my head.

But, I do remember being told that I had a "smaller than average" for my size "Thoracic Outlet".
Which I think is the area above the collar bone, where everything spurts out of your torso, and up in to your head, and down into your arms.

Yes, I am poorly endowed in the T.O. Region..... sigh...

Mike, your body will "naturally" find it's comfort zone.
I remember reading a report a hand specialist here in Philly wrote about me.
The doc was so good, he knew I had TOS before uttering a word, or touching me, just by the way I "postured".
shoulders forward, arms in lap.
(That was long long ago, and I don't remember too much more).
Except of course that test.

I'm sorry if I forgot to tell you it would be painful.

Before my muscles naturally atrophied, I used to wake up, rolled up in my comforter, back against my wife. (The rsd, part of me, naturally sought her body heat). This is when I got claustrophobic.
I could'nt move, because both my arms were NUMB!
I'd have to thrash my body, and wake her up. so she could pull my arms down.
a "Thoracic Surgeon" (the one I have the terrible story about),
suggested that I "Tie my hands down to my waist" before going to bed.
AGHHH!!!

(I like to sleep with my hands up around my pillow, I suppose).
I can't imagine trying to fall asleep, "tied up".

Be well, Mike!

Pete
ASB

Hi Mike,

I am another one that has RSD and TOS. Mine starting with TOS. I had the same thing that most have talked about here. I could control the blood flow in my arm - whether my arm was up or down... I didn't have a pulse with my arms up.

I ended up having rib resection surgery to create more area in the thoracic outlet for blood flow. That's how I got RSD.

The surgery is not an easy one and is considered major surgery. If I had RSD and thought I had TOS, there is no way I would have the surgery to remove that extra rib unless I had no pulse in my arm and I would eventually lose it because of loss of blood... The surgery is that painful and hard to recover from.

BTW, I still have the dead arms in the middle of the night - they fall asleep. I still have the issues with my arm. I also sleep with my arms around a pillow. Even with the surgery - yeh there is blood flow, but the damage is still done.

If I were in your position, I would see the vascular surgeon - but be prepared that they are surgeons. Meaning, they lean toward surgery. But, I would want to know the severity of the situation and if you could do more damage - whatever your situation turns out being.

I would caution though with having any surgery with RSD - especially something so major.

Another Tos'er here. I had surgery to remove a rib on the right side and to relieve the chest pain on the left they did a new surgery where they removed 3 inches of muscle under my left arm.

You still have TOS at the end of the day after surgery. It helps relieve some of the symptoms but it's not a cure.

The surgery is the roughest one I had as Dealingwithtos said. It took me a year to heal from the surgery but like her I ended up with RSD after that.

I consider my surgeries successful though. I don't have the numbness and tingling now nor the pain I had in my arms and hands. The only time I have it is when I try and hang clothes on a line, look at clothes on a clothing rack that is higher then me. Such as a dress rack. I still don't have a pulse when I raise my arm. My nurses cannot get a pulse in my left arm where I haven't had the rib removed. I did have a flare here awhile back from doing things I shouldn't have been doing. My arms don't go to sleep at night anymore either.

I also spent 4 years in PT for TOS, RSD, Fibro and back and neck problems and had great PT'ers.

To me the pain from TOS is almost up there with the RSD until you get it dealt with.

I do feel the surgery is important if you can seperate the pain and see that it is really bad.

I think it's a matter of finding the right Vascular surgeon. I had one of the best and we still talk on the phone after 9 years. He called me awhile back to see how I was doing and we have emailed.

Seeing a Vascular Surgeon is something you should do to determine if you have TOS. As I said though I spent 4 years in PT and the TOS was the only issue we couldn't calm down.

My Dr. now does triggerpoint injections to calm it down for me. He uses Lidocaine and it worked again this last time I got my chest going.

For 8 years though I dealt with solid chest pain until he took the 3 inches of muscle out from under my arm.

I hope you don't have the TOS though.

Ada