NeuroTalk Support Groups - I have a million questions....

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Thoracic Outlet Syndrome (https://www.neurotalk.org/thoracic-outlet-syndrome/)

- - I have a million questions.... (https://www.neurotalk.org/thoracic-outlet-syndrome/207572-million-questions.html)

I have a million questions....

1. Is it possible to have TOS when one day your dr hears the bruit, and not the next?!? He heard it and dx'ed me, then I went for the ultrasound and nothing showed up!

2. What is up with the red/white blotchy hands? Does this indicate arterial involvement?

3. If you have ATOS can you do PT to avoid surgery or is it inevitable?

4. What is the relationship between the sternocleidomastoid muscle + TOS?

Quote:

Originally Posted by lindsayshealth (Post 1086400)

My arterial TOS was diagnosed with CT and MRA, both with dye. My surgeon does not recommend PT for arterial TOS as it can make it worse. Happened to me :)

Quote:

Originally Posted by lindsayshealth (Post 1086400)

1. Idk, but my guess would be because the scalenes may not be as tight on one day.

2. It's like when the blood flow comes back sometimes I think. This is what it seems like to me.

3. I was not diagnosed with arterial tos until last month. I've done PT for ten years. I'm having surgery next month for the first side. I've apparently been a walking time bomb. ATOS is dangerous.

4. I don't think there is one. It gets it's on syndrome. I had problems with this when some crappy pain doctor did trigger points there trying to treat my tos. It felt like my throat was tight and I was chocking. Otherwise it had never bothered me at all.

Quote:

Originally Posted by lindsayshealth (Post 1086400)

1. Is it possible to have TOS when one day your dr hears the bruit, and not the next?!? He heard it and dx'ed me, then I went for the ultrasound and nothing showed up!

bruit alone does not make for a dx..could be tight or spasmed muscles or positional one day and not the next time.

2. What is up with the red/white blotchy hands? Does this indicate arterial involvement?

Do they turn white when raised up and flush red when lowered down? arterial blood flow related. a small % of non TOS people can have this too. so not a for sure TOS thing.

3. If you have ATOS can you do PT to avoid surgery or is it inevitable?

I'd say it all depends on how your TOS came about ,if you have a skeletal anomaly , poor posture, how long it has been a problem , and if you can find very good PT or chiropractor..
Bad PT can make you worse.
It is very important to learn as much as you can about good PT, and speak up if poor PT is not helping you to feel better , and for sure if you are getting worse.
Don't stay and suffer with a poor PT person.

4. What is the relationship between the sternocleidomastoid muscle + TOS?

For me all of my neck muscles were in severe spasms and pulled up my top rib so it was even closer to the collar bone, so everything in the area was getting compressed.
After my chiro helped to resolve the spasms, I still was having limitations on arm use.and weird choking feelings. So I looked for a PT place that had TOS and RSI info on the website, it turned out to be owned/ operated by a well known PT teacher at the local university.
He was the one to try dropping/mobilizing my top ribs - the first side dropped 1/2 inch or more so he did the other side ,and it was amazing the pressure and choking throat feelings were instantly gone.
I drove home and didn't have to keep changing hands on the steering wheel, a 40 minute drive on winding roads..

my replies in purple..

Yes, they are red + blotchy when down and walking or just sitting with elbows bent. They get pale and veins deflate when I raise them. Pulse diminishes on left wrist when my arm goes up, but doppler and MRV show nothing. How frustrating. Is there another test to ask for, or do I just need to see a TOS specialist?

The reason I asked about the SCM is because that is related to the ear/eyes/face and I have TONS of pains in those places. Do you guys?? Not sure if SCM is just compensating for the scalene tightness, guarding, or what...

I got a NUCCA (upper cervical chiro) treatment last week. It stopped the tingling in my upper back completely, and I could sleep on my side again. Pretty amazing.

Maybe trigger points in the SCM ?
http://neurotalk.psychcentral.com/thread125577.html

Quote:

Originally Posted by lindsayshealth (Post 1086697)

Just go see a TOS specialist. Ask for botox for diagnostic purposes, or as least lidocaine block.

I have jaw and face pain. I actually paid for cosmetic botox to be injected into my jaws for this several times. It was very expensive. I thought it was just tmj, but I was amazed when the pain in my face went away with a lidocaine block to my anterior scalene.

I have a weakened pulse with several positions, but it never goes away completely. I enjoy letting nursing and medical student try this out on me or docs with little or no experience with tos. They are always so intrigued by this, I find it entertaining.

There is little rhyme or reason to the color and temperature changes in my hands. I've had A degree in temperature change between fingers on the same hand. The red blotchy sometimes is accompanied with nerve pain for me.