Does anyone else out there have arterial thoracic outlet syndrome? I am having some problems and would like to hear from anyone w/ the same condition and compare problems.

Welcome to our TOSer group

we have lots of info for you.

Here is a loaded thread.

There's so many. I know it's a lot of stuff to go through, but it helps to read other experiences.

Let us know if you need anything

Hi,
I have(had---had surgery for it) compressed arterial and venous subcalavian vessels. I had a veinogram to identify this as well as an ultrasound that put me into provocative positioning to discover that the vessels were compress. I had to have the surgery as they were 90% compressed. The surgery released the compression and stopped the huge swelling in my hand and arm. I was experiencing a major problem with walking and moving my arm. It was due to the surgery that released the pressure of the vessels. I had my 1st rib removed and my scalene removed. I also found out that after the surgery I have neurogenic as well as the vascular tos. I still have pain due to the PT as it made the surgery totally useless. I was so ticked off due to the PT people wrecking the surgery which had totally taken ALL of my pain away!!!! I was off all my meds...now I have a major neuro pain due to the ???scar tissue or what??? I don't know if I have a compression higher up the BP or no or if it is the scar tissue that is the problem.

i hope to go to have a total 3d mri and mra to discover what and where the compression is and see what I am able to do about the pain. My life stinks!
well not really I have an amazing support here and an amazing fiancee who works tirelessly to help me in every way he can...including taking me to the MRI in the USA and paying for it if we need to as a result of the unknown compression. WE NEED TO KNOW WHAT IS CAUSING THE PAIN. I have to have a cause so I know where to treat and what modalities to use.

I believe the compression is higher up than the BP and is causing the compression there and I am having referred pain in my arm with the numbness tingling and pain there. WHO knows!!! All I can do is wait for the MRI and find out what is happeing to me.

I hope some of this helps you !
feeel free to PM me!
love and hugs,
Victoria RN

Yes, dear

So glad you've got a plan of action going right now.

When are you scheduled?

Time flys by so I hope it's sooooooooooooooonnnn!!!!!!!

Thanks for your message it helps to know someone else knows what I am going thru. I went to my surgeon and he said all my lue and rib pain was from a nerve entangled in scar tissue and I would have to learn to deal with it. I sometimes wonder what he would do if it was him suffering. I know he is a fine surgeon and person, but I don't know if he fully understands the pain. My arm swells and throbs if I walk for any amount of time and sometimes it feels like someone kicks me in my ribcage. I dread the thought of pain control doctors, but I must have some relief. My arm gets tired and heavy when I type or even dry my hair. Thanks for listening to me gripe and complain.

I bought a hairdryer stand. It helped.

More tips

http://neurotalk.psychcentral.com/thread60797.html

http://neurotalk.psychcentral.com/thread43297.html

I hope you find relief soon

(Broken Wings)