I am going to see Dr. Criado next week and I am really hopeful. Did you see him? I have had all the testing he requested at U of M about 2 weeks ago including a CT with dye. I am really happy to hear that he pays more attention to symptoms than test results.

Yes, I saw him. He sees a lot of TOS patients.

Most everyone here seems to have had problems with pain. Although I'm glad to say that I have that portion of my problem mostly under control.

I think most or all of us have had muscle tightness too. I've improved, but still have much work to do.

The burning varies a lot between us. Some have mentioned it. I've had it maybe a few times total.

Remember that TOS is a syndrome and that it varies per person. I presume the variance is due to things like:

-- where is the compression?

-- are there are other coexisting health problems?

-- your individual body, nutrition, stress levels, posture, work day, etc.

So don't be alarmed about some variation between you and others.

Looking at additional posts in this thread, it sounds like you're seeing the right doc and getting on the path to a diagnosis which will of course lead to a treatment path.

1st doc --> ER --> undiagnosed

2nd doc --> cardiologist --> undiagnosed

3rd doc --> chiro --> TOS

4th doc --> chiro --> TOS & skull misalignment

I didn't know at the time I should have checked with a vascular specialist. You'd think the ER or cardio would have suggested it, but it was actually the 3rd chiro that did!

But I'm making progress with my current chiro who has also been treating various alignment problems. So combined with things I'm doing at home, that's my present course. Also, I have the Edgelow home PT system on order and looking forward to cracking open the DVD and "rib mobilizer" and seeing what that's all about.

I'm not that interested in having a vascular surgeon cut out my neck muscles and top rib, which is mostly what they do for this condition. Of course, you need to see one if you want a PT referral. And it sounds like you are seeing a good one, so you should follow through for all the Q&A, diagnosis, etc. which I'm sure you're doing.

Re: location and severity, the severity varied immensely with some days feeling very normal and other days just awful. Location varied somewhat too, but with certain spots being more frequently troublesome than others. Also, my problems are 90% on the left.

As my symptoms have declined, the variance in the location has declined as well with fewer spots giving me trouble.

HTH

short note for all-
This might be premature but fall & winter are around the corner...

Don't be surprised if when the weather changes you feel a bit worse.
The barometer changes & damp & cooler temperatures do affect us, just an FYI if you haven't heard of that before now.

Keep warm.

There's a solution for that called "Southern California".

Hi Titus - I'm not a swimmer but my Alexander Technique (AT) teacher showed me a book written by Steven Shaw who is an AT teacher and a swimmer. The book is called: The Art of Swimming by Steven Shaw and Armand d'Angour. I copied this from his website:

"Shaw Method applies the principles of Alexander Technique to swimming. Alexander Technique will teach you to use your body and mind without strain. Put simply, this is what Shaw Method also seeks to achieve, in the water.

Shaw Method teaches greater body awareness, strengthens the relationship between mind and body, promotes freedom of movement, and helps to prevent strain and injury.

Shaw Method is appropriate for you, whatever your ability. It is especially beneficial for: confidence building, the learning of new strokes, improving performance, enhancing the enjoyment of water, and if you are suffering or recovering from neck and back pain."

From what I've read, swimming can bring on TOS. However, maybe with some modifications that you could learn from this system, you could continue with swimming?? Just a thought. I know I would love to go back to the gym to do some real cardio but for now to keep my scalenes in check, I just walk. Anyhow, if you've never heard of AT, check it out. I'm not sure if you need to have some basic AT lessons first before you can apply them to swimming. I recently started with AT lessons and have had about 14 lessons. It has helped me become more aware of my body, the conscious and subconscious tension I hold, and has definitely helped with my posture. Good luck!

LOL - But I love Oregon, my dh was a CA guy , but he has adopted OR for life.
We gotta be around those big trees and green hills & blue skies

How did the appointment go, Titus?

My appointment went okay. My husband came with me and he thought it went well. I felt that it was really rushed and I felt very over whelmed with the diagnosis. Dr. Criado said I have TOS even though test came back normal and was recommending surgery. I wasn't expecting a surgery recommendation and I'm not sure I even understand what the surgery would entail. he described it as removing part of the first rib. Did you see him more than once before you had your surgery and did you have your rib removed. I thought he would be recommending something less drastic like physical therapy but he said physical therapy wouldn't help which really confused me. I am new to using a chat room, but is there anyway I could email you directly with some questions.