I get the feeling i have the worst case
 

Ive been researching more on TOS since i finally found the cause and definite diagnosis of the symptoms ive had since my car accident 2 months ago. Doctors had no idea. Amazing how instead i had to do a search on the internet to find a diagnosis.

Ive been having arm claudication ever since the accident. I can't drive, type, brush my hair, rinse my hair at all with my left arm. If i do try, i would start feeling some kind of tight pain in less than 3 minutes.
I also feel a pulsating beat in my head a tome and a twitching in the left side of my face.

The big scare for me is i can literally feel some kind of lump in my artery on the base of my neck. Initially i thought this was the carotid artery and was scared ******** of the dangers from that being occluded. I had a carotid doppler and that was clear. Later on after searching the internet, i realised that was pointless considering the carotid artery is located more inwards.

Now that ive realised i do have TOS, its hit me that this is the subclavian artery which might be occluded. Reading more, this puts me in the category for 'Arterial Outlet Syndrome'. I know this is the most serious case. Everything points to me having this - the arm claudication which is associated with the arterial type. The non existant pain, swelling or numbness in my arm which is associated with the venous type.

Do i need a angioplasty? Reconstruction? If it were not to be a success, would i lose my arm? These are the questions running through my head.

Though the main question that i would like to ask is, has anyone gone through Arterial Outlet Syndrome and later on had surgery? It'd be nice to hear how it went for different people. Id like to hear both positive and negative.

Does your arm swell or change color? A lot or a little?

Our useful sticky thread has many articles, anatomy, saved posts, polls, video links - on and on, plus the main TOS drs info sites.

I suggest you skim thru those if you haven't seen them yet.
It's a great crash course of info. # 1 is condensed with lists of links.
http://neurotalk.psychcentral.com/thread84.html

i'm not sure if the lump is actually in your artery or not - it could be a trigger point {small knot} in a scalenes or the SCM muscle.
it could be a swollen lymph node.

if any drs or PT places on our list are near you you might contact one of them for an evaluation -
http://neurotalk.psychcentral.com/thread135.html

I have had good results with an advanced PT and a very good chiropractor.
Tight muscles, sticky fascia and misalignments can really affect the body so much.
But you need to find someone knowledgeable in the whole body and soft tissue injury to check you out and then go on from there.

Hey Jo, my arm doesnt swell or change in colour. What does this tell you?

Thanks for the links, ill have a look at them later on tonight.

hi jason, im not too familiar on your case but i gather from what i have just read from your thread that you are having trouble getting a diagnosis?....i am almost 4 years in now and having the same problem(as have most people on here). however i am in the uk and not lucky enough to have access to some of the dr's that are listed on this site.

just wanted to say that i also have had a lump on the side of my neck near the base - it has been there for the last 3 years and i would agree with jo that it is to do with a scalene or lymph node...not necessarily anything to do with an artery (of course its better to be safe than sorry and see a vascular dr). if u have had a doppler then perhaps that would've shown any blockages?....

so sorry you're suffering so much. I've been through a lot with my MVA (motor vehicle accident) injuries from 10-11-2000. I was active with this forum but had an acute exacerbation with my arms, shoulders and hands after an outpatient procedure on 09-14-07. They gave me an IV in my hand that I felt a lot of discomfort with and didn't ask to have it moved. (I'd had three other IVs for epidural injections in my cervical spine with no problem) well when I woke up, the old pains were back and flaring on both sides. I'm just now getting back to where I was before the IV.

My doctors go "humm" and seem to be cautious not to make me worse, or don't know how to help me.

I had posted a lot of self help things I've tried and gotten a little or a lot of relief with. If you can't find those, let me know and I'll work hard to get that to you. I'm going to try to put it on the Thread that's been created for TOS. I may have to ask for help to get that out for current use.

I also had pain and difficulty with ADLs (activites of daily living). A hairdryer on a stand is a must. I underwent laser hair removal for my legs and underarms. Personal care is painful and can become impossible to do.

I believe I have found a tool that will be helpful. It helped me once before and now again with this most recent flare. I'm just not a quick healer, unfortunately.

Like I said, so sorrrrrrrrrrrrrrrry you're suffereing. if it helps, you're certainly not alone and your case could be worse than most. I can also tell you from experience: Your arms are not going to explode or fall off. Realizing that seemed to comfort me.

Hang in there.
(Broken Wings)

First of all let me give you a piece of advice..DO NOT go into any doctor's office and tell them you have TOS. Especially since you apparently diagnosed it yourself, "I was almost accused of that myself!!!!! I have bilateral neurogenic arterial vascular thoracic outlet syndrome. My subclavian artery was pinched due to the narrowness in the brachial plexus area. The vascular surgeon heard a bruit-an unusual sound of blood through an artery-a whooshing sound he heard with his stethoscope. I too searched a whole lot of information on the the internet, and spoke on the phone with Dr. Richard Sanders in Colorado. I sooooooo wanted to at least be examed by the doctors in Colorado but I'm a worker's comp case here in OK and that was way out of the question, so I bought his book and learned all I could, anywhere I could. But I did have PT for a year prior to my rib resection. I don't know if my story is still up in the sticky notes but I've been through a tremendously painful and horrifying experience-You might find some info by reading it. One more thing I just thought of-I complained to my vascular surgeon there was a lump there at the base of the neck which was larger since the surgery. He told me-and maybe it's possible that it was gt this-a fatty pocket near the lymph node. IT WAS FAT!!!!!! He did do a cat scan to make sure there was no cancer there or anything after he told me even my neck was FAT....

I can't type very long cause of the TOS and related RSI surgeries I have had so I hope this helps you get a small picture of what vascular arterial TOs is about.