I would do all of the pt possible, if there is any hope of getting better, because it would be worth it. I have heard a couple of things to be aware of: first, the wrong pt can make things worse, second, it is a slow process, and third, it isn't good to have pain through it - it shouldn't cause flare-ups. Also: never use therabands, and don't let them tape your shoulders back.

Mod3 love your avatar..we have a bloodhound his name is Travis and he looks just like that one in your picture.

I need to exercise..lol..I have a treadmil but my problem is I can't stand or walk over 10 min my left leg from my hip to my knee goes completely numb and very painful. This happened over 27 years ago when I was pregnant with my first son.

Because of all the cervical spine surgeries I can't do any type of crunches for my belly, I was told something about reverse crunches but I haven't tried those yet.

My husband keeps saying summer is right around the corner and you are going to be complaining that you can't fit into your summer clothes..lol

Yes Marc - I also hope you have a one on one class - thats important! Please let us know how it goes.

Locococo - you are right with TOS - finding the right mix of things is important!! Tricky and takes a while - but its all worth a try!!!
Hope you are doing well!!

Keep us informed Marc. and don't give up on it!!
Allison:canadaf:

Technically, she's an OT, but after being under the care of a hand surgeon who didn't help me, she is a breath of fresh air.

Carol Nicholson at Swedish Cherry Hill in Seattle, WA.

I wrote a response to this a few days ago - but it looks like I deleted it in my drug-haze rather than posting it.

I never used a compression sleeve, but I believe it was suggested as something I might want to try before I had such success with growing the collateral veins.

It is something that is used fairly frequently with DVT in other body parts (particularly the legs):

Just because it is good elsewhere doesn't necessarily mean it is good for DVT of the subclavian vein at the thoracic outlet. (For research purposes, you probably want to know all of the various names: Paget-Schroetter, venous TOS, DVT of the subclavian vein at the thoracic inlet (technically more correct than outlet - but rarely used, and UEDVT (upper extremity deep vein thrombosis)). But - back to the question you asked - at least you know your doctor is not clear out in left field - it is a helpful treatment for DVT, generally - you just need to probe a bit further and see if it is used for DVT in this particular location. Here's one quick article I found which suggests it is a good thing: I haven't done thorough research on this, though, since it hasn't been an option I needed to explore.

I will keep you posted - thanks for the encouragement. Tomorrow will be the test after going more than two weeks w/out seeing him and symptons starting to return. If they go away again, I'm totally a fan for life. Stay tuned :)

Hello,
I bought an inexpensive brace to try and work on my posture:


After putting it on, I realize just how hunched over I have been! It feels really weird to be sitting this straight! My chest actually spasmed for a little bit when I first put it on and my arm feels a little tingly, but I can see how much longer my spine is when wearing it and I think I will work with it slowly and see if I can adjust slowly over a few months. I have also been doing some of my Feldenkrais work each day. I can't believe how different my body feels when I lay on the floor for a while once a day! Another spine, straightening thing. I feel 2 inches taller when I am finished!

Fingers crossed for all of us!:crossfingers:

Phil,

That is such good news and I believe the traction could have been the answer all along. When I first started this TOS mess I suffered a nerve impingement and because I had a herniated disc c-7 - t-1, my physical therapist used the traction machine on me twice a week for several months. It felt wonderful, in fact I basically recovered and went PT free for almost a whole summer before the TOS kicked in. Because traction and TOS are said not to be compatible, when I returned to PT we discontinued that therapy for weights, therabands and an arm bike. Everything was uphill from there, getting worse as I went along. Perhaps I should have stayed with the traction too!

I'm thrilled for you.

Tara

Locococo,

I also posted some water stuff under the Watsu thread. Think I may have seen some of your thoughts there too, but in case not...and if you are interested further in water and TOS, you may find in beneficial.

Murrmaid

If my insurance covered it, and I had childcare...I'd watsu everyday!

Personally, I have had watsu both pre-TOS and post. In relation to post-TOS...I found it to be a very effective and comfortable way of stretching/lossening all of the muscles of the upper part of my body. It's kind of like lymphatic drainage massage in that...it's effects are immediate and dramatic...yet short-lived. It would take either of those two modalities having treatment every day or every other day to truly have an effect.

I must say that I find almost ANY activity in the water to be HEALING...any and all forms of religion and spirituality can tell you that if you don't have personal belief of your own. Rain8

I "used to be" a swimmer but now, of course, cringe at the thought of strokes. However, my neuroligist/TOS expert is a strong supporter of water aerobics (using the bottom extremeties only). Although I no longer do the water aerobics because getting my heart rate up seems to exacerbate my TOS symptoms, I used to do it in a light fashion and it raised my spirits greatly and improved my flexibility and oxygenated my muscles if nothing else.

Two summers ago, I donned swim fins, goggles, and a fancy mid-line snorkel...and kicked, and kicked, and kicked myself into some bliss with my underwater I-pod loaded with chants/meditations/Oprah/Tolle's New Earth lectures, etc. The snorkel provided no drag/tension because it was mid-line, right above the central forehead. The use of the snorkel allowed me to position my head and neck comfortably for breathing. AND....the momentum of my body through the water actually created a "lift" effect of my shoulders...providing a nice pec stretch and opening the brachial plexus. I did this for about 6 weeks. The downfall was the handwork required to get to the pool. Drive, young kids, childcare, put on a swimsuit...pull/tug....would have been much easier to do it in the nude :HBGIGGLING:...and I have no modesty at this point anyway...putting on the fins, washing hair, etc. Not things I'm able to do now as my condition has worsened and the lymphodema has set in.


My doctor suggests that the freedom of gravity provided by the water can actually open the brachial plexus and be effective therapy. I must say that I have found floating in the water and/or supported by floats in the water HAS been beneficial for my TOS.

In my opinion...all of this TOS stuff pretty much sucks....so if you can find something like a Watsu massage, a spiritual retreat, or a chocolate ice cream cone to make you "feel" better....go for it!:amen:

Thanks for the information. Will look into it. That helps really. Hope our insurance cover it. Good luck with everything ;-)

I tried acupuncture but it didn't give me any relief. However, my practioner said that there are always a few for which it doesn't help but you won't know til you give it a try. Best to get a recommendation though.

After hyperventilating my way through the TOS shuffle, I made sure my ribs, scalenes and every other muscle used in the breathing process, which are a lot, were rendered dysfunctional. :(

Breathing is the only thing that I can control! Through the Edgelow Protocal, I have learned to use my breath to reduce pain, relax and stop clavicular/chest breathing. I also use Biofeedback CD's that I have loaded into my iPhone. I use them while waiting for the kids, Doctors appointments or just to relax. As Dawn stated, you must practise! It's really a skill. When I use these CD's, I use them while sitting up. It's much easier to relax and breathe while laying down, but since you spend most of your day upright, I am working on transitioning my diaphramatic breathing skills to this position. Edgelow as well transitions you to using your diaphramtic breath while sitting....a bit trickier when upright.

There I times when I start breathing with a cold, blueish hand and part way through, I'll just feel a warmth take over. My hand will get toasty and the color of normal human flesh. :)

fw

Four months ago, my thoracic spine was a blazing ball of fire. It had been like that for well over a year. Massage or any type of manual therapy was not possible or advisable. I was unable to even place my head in a massage cradle without causing Neuro symptoms and massive discomfort. Through a lot of work, patience and learning the word "no", I just had my 5th Rolfing Session this morning. Three of them with a Rolfer who has battled TOS herself.
She approaches me a lot like a Feldenkrais therapist....sneaking up to the problem, not attacking it first. She has completely stayed off my BP and is only working on the supporting structures. The goal is to unravel the mess while avoiding any type of flare. It feels so good to finally have deep manual therapy!! :CL