newbie
 

I'm 40, newly diagnosed with TOS by Dr. Hugh Gelabert at UCLA. I developed TOS through a variety of factors, mainly chest breathing, lots of stress/tension, and having to overcompensate for having a short arm cast on my right (dominant) hand for 6 weeks (plus not being able to use it 100% afterwards as I was going through therapy). My TOS is bilateral, left is worse. MRA shows greater than 90% subclavian artery blockage in arms raised position. There is also some blockage on right side. I do not have an extra rib.

So my course of therapy is to start with PT for 4-6 weeks. Dr. Gelabert mentioned the scalene blocks but I'll hold off on that for now. I've also taken about 10 Alexander Technique lessons and will continue with that as it's helped me to become more aware of the subconscious tension in my body.

To complicate all this, prior to TOS diagnosis, I was diagnosed with bilateral cubital tunnel; however, it could all be from TOS. I literally was ready to go under the knife at my elbow when TOS was thrown into the mix.

Anyhow, this is a great site and very insightful for all of us going through this "journey."

Thanks for sharing. How is the PT going?

Also, where did you take the Alexander Technique classes if you don't mind me asking? I'm in the LA area as well.

Well I really only started PT in earnest this week due to some scheduling conflicts with my therapist. So, after two sessions I definitely feel less tight in the upper body but still feel tight in all the usual places (scalenes, pecs, below clavicle). She has given me some breathing exercises (basically lying on back doing deep diaphragmatic breathing). She has also incorporated some very light theraband resistance for my upper back. When I do these exercises, I have to focus on my breathing so as to minimize incorporating my scalenes and SCM. It's quite an effort to do this and I find that looking in a mirror really helps. I also lie on my back on a foam roll to stretch my pecs but this seems to really bring on he coldness in my hands so she will probably have to modify this. I have bilateral subclavian artery compression and ulnar nerve compression. My symptoms are still about the same, they have not flared from all the manual therapy and light exercises. They also haven't improved but at least they haven't gotten worse!

As for the Alexander Technique lessons, I'm in Orange County, and found a lovely older woman who has been teaching for 20+ years. Her name is Phyllis Gilmore. She has an amazing ability to sense tightness in the body. Her hands could be on my arm and she'll know that I'm tense in my left hamstring (or somewhere nowhere near my arm!). I can ask her for recommendations in the LA area if you'd like. Is there a particular area in LA? I'm still taking lessons about once a week and they really have taught me a lot. I am still amazed at how, with her guidance, I am able to inhibit my tension when I'm in a lesson. The lessons have taught me to become more aware of the overall tension in my body. While I'm still working on how to inhibit on my own, I've learned quite a bit. I highly recommend taking a few classes and have an open mind and be willing to "let go." It's hard at first but you will get the hang of it.

I've also had a few massages over the last few weeks and they've helped as well. Make sure to ask your massage therapist if they've worked on TOS. I found one that has slight case of TOS herself as does her significant other. She spends a very heavenly hour massaging pretty much every muscle in the upper body with a heavy emphasis on pecs (minor and major), scalenes, subscapularis, traps, rhomboids. She also throws in a little active release when I can tolerate it. In case you are going to get a massage, I think it would be awkward if a man was massaging my pecs/chest region the way she does so I would request a woman.

Anyhow, I've rambled on...off to do some deep breathing!

Wow thanks for all the details!

I'm currently doing chiro + Egoscue and I just ordered the Edgelow home kit. How can I resist a kit that includes a "rib mobilizer"? :)

I've had one massage, but she didn't listen to me and worked my whole body instead of focusing on the upper body like she should have. Maybe I'll try again with someone else.

Regarding LA, I'm just south of Hollywood and close to West LA. If you remember to ask for a recommendation, that's cool, but otherwise it looks like http://www.alexandertechnique.com/teacher/northamerica/ will help me find a teacher.

I'll be really interested to know longer term if the PT + Alexander is able to alleviate your vascular TOS.

Good luck with the Edgelow system. Sounds like it's worked for a lot of others. Keep us posted on your progress.

As for a massage, I would try another one and do some research on your therapist if you can. I talked on the phone to the one I'm using before we actually met. You don't want to waste your money especially if they aren't even working an area that isn't bothering you!

You'll probably find a lot of Alexander teachers on that website. Good luck! As with massage, I think I would feel strange if I had a male Alexander teacher as my teacher's hands are on me pretty much all the time and there have been times when she's had to help me sense where my sitting bones and other places close to private parts. It would be awkward with a man doing this, at least for me. Just something to think about.

I'll keep you all posted on my progress with PT and Alexander as I really would like to avoid surgery, as does everybody else!!