[Scaredsilly]

I am starting to obsess about this venous /arterial tos. I have this strange link near my temple and had an mri without contrast. It showed nothing but maybe bc there wasnt contrast. I get pain in my neck and Sharp pain to my temples. I'm thinking if it effects my hand it must be doing somethibg to my brain and neck ? Can you feel an aneurysm through your skin on your head ? Am I over reacting ?

I am falling into a depression thinking I'm going to die or get a stroke from this and im only 26. There isn't much information online. How are you dealing with atos ? I need someone to help me with my fears. Im trying to find a good doctoqr who specializes in this but I hate feeling like any day I'm going to throw a blood clot waiting for right doctor. Any advice is appreciated. Thank you.

[chroma]

I don't know what you mean by "strange link near my temple". Can you rephrase or post a pic?

I have ATOS. I get a lot of relief from propping up my shoulder girdle. It takes the pressure off.

I had really bad symptoms early on. I could feel my heart cramp under my sternum and I would blanch and almost faint. Once TOS was determined, I started propping up the shoulder girdle on the theory that it would decompress the area. The theory worked and I haven't had a heart cramp since. I found out later this was already discovered and is called something like the Cyriax relief position or something.

This guy had a stroke:
"All-Star pitcher J. R. Richard suffered a career-ending stroke from an undiagnosed case of TOS."
http://en.wikipedia.org/wiki/Thoraci...table_patients
http://en.wikipedia.org/wiki/J._R._Richard

...but he went and played professional sports after his initial doctors failed to diagnose him correctly. Don't do that. :-)

And don't go brisk walking or power walking with straight arms. It'll make things worse. Bend the arms or support them in or on pockets.

But before you freak yourself out, you have to consider other possibilities as well. I also had TMJD and didn't even realize it the first few months. That can cause all kinds of pain and strange sensations in the head and neck. I found out by plugging in some of my symptoms of the head and neck and getting a lot of hits for TMJD. I closed my eyes and opened and closed my mouth and could hear noise coming from one of the jaw joints. I knew right there I had it, although I saw a specialist later to confirm.

Also keep in mind that any kind of pains can be caused by spastic muscles which become spastic through stress, trigger points, compressed nerves and overuse to compensate for bad posture or other tight muscles tugging on, for example, your head.

The other thing that helped me was a diazepam for the purpose of a muscle relaxant. I started at 2.5mg 2 X per day, but now take 2mg 2 X per day.

I got some help from chiro getting that first rib down.

I got a lot of help from seeing Joyce Wilkinson PT in Santa Monica, CA who found more things wrong with my body than I realized. She does OMT as well as PT so she's not a typical PT.

I also wonder if my body created any additional collateral circulation. I have more veins in my symptomatic shoulder, so it wouldn't surprise me if I had more arteries as well, but of course you can't see them.

Anyway maybe you can try some of the things that helped me since I have the ATOS too. Jo*mar had some similar problems and also got relief through non-surgical means.

Some people here have been helped with acupuncture although I haven't gotten to trying it yet.

I know it's annoying and stressful not getting the definitive answers for your symptoms, and not getting all the tests you think you should have. I've been there and it sucks. This whole experience reminded me of how slow, ineffective and expensive the American medical system is.

Keep us updated.

[Scaredsilly]

Chromatic thank you very much for your quick response. So you had decrompression surgery ? Do you still have arterial tos ? I realize that pitcher had a stroke but is it common to get one having tos ? Also, I def have tmj and am very stressed out. It def contributes I'm sure to the symptoms or is causing them. I have zero of neurogenic symptoms. I had an ultrasound of both arms. This wouldve told me if I had a current clot ?

I have to look more into this shoulder shrug thing.... I need to lose some weight and want to get into yoga and cardio classes but is that dangerous ?? Never thought something so healthy could be dangerous but now I worry about tos all the time. I'm in new York and having a very difficult time finding close good doctors here. So far the closest two doctors I've been recommended to go to is Dr brantigan in colarodo. And a Dr in Boston. I hear once the thing tjats causing the decrompression is removed and you've gone to correct fantastic surgeon your cured. I guess depends on which surgeon you go to. I know a few people through here who r cured.and no longer visit this site.

I just realized I wrote "link" before...I meant bump. My phone automatically corrects words sometimes and it was wrong. I have a small bump on head.

[chroma]

No surgery. It was initially an old chiro that diagnosed TOS. I went home and read up on it and was like "THAT'S ME!". I had a flare up that night and started doing the shoulder girdle propping thing which gave much relief.

I knew that vascular MDs primarily recommended PT or surgery and I was not in a hurry to get surgery far various reasons including the complexity of it--which has been discussed here in the forums--and not having health insurance. If the surgery was a slam dunk I might have sought it out, but it's not and they don't give a refund if it doesn't work.

The first chiro couldn't treat me and admitted as much, but I ended up seeing a 2nd on someone's recommendation and starting making progress. Unfortunately, my progress plateued too early, so I saw a vascular MD after all, mostly to get the PT reference. He diagnosed me with TOS based on my symptoms and performing various arm positional tests on me. He palpated my subclavian artery and said it did not feel that it was blocked enough or abnormal enough to warrant surgery before trying PT. I wonder what he would have found when I was at my peak symptoms in July 2011.

Yes, I think I still have arterial TOS as I can feel my pulse get trapped in my neck on my left side, although this has improved with Joyce's help. Also as I've become more familiar with my body and learned more, I've come to the conclusion that I also have pec minor syndrome. See http://www.ecentral.com/members/rsanders/

In 2005 we became aware of a large number of patients who, in addition to these symptoms, also had pain in the anterior chest wall, just below the collar bone along with pain over the shoulder blade and in the arm pit. Until recently it was thought that these symptoms were due to TOS, but now it has been learned that they are due to a condition frequently accompanying TOS, namely pectoralis minor syndrome.

Re: strokes, I don't think it's common. I see it listed as a risk and it has happened, but no one on here has mentioned having one and I haven't seen too many references.

Re: TMJ, I'm not surprised since you have complaints of the head and neck. I recommend you read "The TMJ Healing Plan" and apply any suggestions you're not already doing. I'm only a 1/3rd of the way through the book, but it's well written and informative enough that I can already recommend it.

Yes, an ultrasound would have found clots if you had them.

Be careful with yoga in that you don't want to keep your arms in a provocative position. Like I lose circulation with my arm elevated straight up, so I don't keep it there and I usually don't bring it up all the way in any exercise. For this reason, I prefer to do my yoga and other stretches at home instead of in a class. I manage my movements myself and it's easier to listen to my body without distractions.

Re: cardio, that's been so difficult for me. Compressed blood vessels + cardio = fail.

There are a lot of therapeutic exercises you can do that don't involve beating yourself up or aggravating your symptoms. Start with those. I do 1 hour every morning and feel better for it. On the rare days that I miss, I don't feel so good by the end of the day. I recommend this book, not as a panacea, but as something helpful and to get started with some good therapeutic stretches:

http://www.amazon.com/Minutes-Pain-F...5619235&sr=8-1

Also look up Somatics, Egoscue, Feldenkrais, Alexander technique.

I'm not suggesting that you can get over ATOS or any kind of TOS with pure self treatment. At least for me, my chiro and PT/OMT have effected improvements in my body that I could not have accomplished by myself.

I'm glad to hear you say this:

I know a few people through here who r cured.and no longer visit this site.

Because usually we just get the failed or semi-successful surgeries posting here because they need more help and info to cope with their situation. It also confirms my long standing presumption that healthy ex-TOSers just don't come here, so this forum creates a skewed perception.

Re: your head bump, I don't have any experience or knowledge in this area.


My impression from reading and research is that if you have pure ATOS/VTOS and you go to a good surgeon, you stand a very good chance of recovery.

But please do the following ASAP:
* reduce your stress as much as possible
* improve your posture as much as possible
* address your TMJ
* find some stretches that work for you

This will enable you to make some progress while you're making the medical rounds.