I have spent way too much time researching all of this, and w/this weird form of TOS I have, and all the crazy symptoms that come w/TOS, I have found one common denominator: circulation.

The blood isn't moving in the thoracic outlet, so it inhibits blood to other places. This is why people w/TOS often have issues like pirformisis (sp?), carpal tunnel, foot numbness, etc. Jaw and face pain is not something unrelated to TOS - it is CAUSED by it; same w/raised BP and heart rate. Obviously if your blood is not flowing through the thoracic outlet you will have venous hypertension. Also, if you read some of Dr. Collins's case studies, you'll see that he compares our circulation to a water hose, and if there is a kink in it, it will inevitably cause all sorts of problems throughout the body.

For you all that have migraines with your TOS, these are vascular migraines. It's because of your TOS that the blood is not getting where it needs to. And if you are having them post-TOS surgery, you need to see if your jugular veins are stenosed due to the scalene/SCM compression on them for so long. Read about CTOS/CTVNS - Dr. Noda for more info about this.

I really suggest the book Rise and Shine by Simon Lewis, it is about his horrific car accident, coma, etc, but...he had the rib removal done by Dr. Ahn and was diagnosed by Dr. Collins. There is lots of good info in the book, and FYI he too had migraines.

Just wanted to share some info and hopefully help someone!!!

Thanks for the information. Many things improved for my daughter after her surgeries.

Nice! I have piriformis issues, maybe it will go away if my surgeries go well.

In fact, I am hopefully to be off every single medicine I take, except for concerta within one year of my second surgery. After that, it is my goal to not go to the doctor for a year, like not for anything except a check up. Wouldn't that be nice?

Oh I hope it goes that well for you!!! Fingers crossed!! You are bilateral right? If you are, do you know when you'll have the second surgery?

I think the other things WILL clear up if they know where the compression site is. In some cases surgery may be unsuccessful if the doc isn't sure what is causing compression...pec minor? c'rib? first rib? ant. scalene? middle scalene? All of the above?!?! Anyway, search: batson's plexus and thoracic outlet syndrome...lots of info!!

Before I went to see my current surgeon I was also offered surgery with removal of first rib, scalene and pec minor release.

I'm so glad I got a second opinion. Dr Gharagazloo is looking for a specific abnormality of the first rib and he does not offer surgery unless he knows exactly what is causing the compression and removing that piece alone.

I was very uncomfortable with this ambiguity and "let's remove all that stands in the way just in case" approach.

How would upper body circulation inhibit circulation to the feet?
Do you have any links about this? Thanks...

http://www.tosinfo.com/pdf/jnma_0612.pdf

http://www.tosinfo.com/pdf/jnma_0111.pdf

http://www.tosinfo.com/pdf/jnma_1010.pdf

Read those articles. See how the author demonstrates that when we have decreased venous supply in the T.O., it diverts to the vertebral venous plexus/Batson's plexus, and causes pain in other places (legs/feet/hips/pelvis). Your blood, lymph, etc. is being deprived of its nutrients and starts backing up in other places. Not to mention the obvious postural changes that come w/TOS causing issues themselves. Also, I think this is why so many people w/TOS get RSD because the blood isn't flowing where it needs to be.

I have poor circulation in my legs as well and that is one of the pre-op tests I need to get done. To check for blood clots in legs.

I wonder if it has something to do w/the TOS. Or if TOS'ers just have poor circulation to begin with, so we're predisposed to problems like TOS?? My feet starting tingling a couple months into the TOS...

Tos doesn't make feet tingle. Damage to the cervical spine does. Have you had a MRI of your cervical spine?

My feet started to tingle when my neck began to relax as I was getting somewhat better. This started when I began to get better, not worse. Damage to the lumbar spine also makes feet tingle.