[chroma]

Originally Posted by Shadow1

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.

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.

[Shadow1]

Originally Posted by chroma

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!

[Jomar]

Hello Shadow,
I'll place copies of your posts here on the main TOS thread area for more hellos & sharing.

[Smileymichelle]

I am a 36 y/o female diagnosed with TOS on my right side a couple months ago. I'm not sure of the cause but it's probably related to past MVA. My right side is in constant mild to moderate pain. I take gabapentin which helps somewhat. My spine doc recently told me unless I want surgery my only options are drugs or Botox. PT isn't helping much. I am looking for other options. I don't want o be in pain/on drugs the rest of my life.

[MarcS]

My name is Marc, 21 years old, Denmark - been suffering for 3 years, from what doctors now believe is neurogenic TOS. I first started being diagnosed with bilateral tennis elbow, but that diagnose quickly feel to the ground after doppler ultrasound, second opinion from a rheumatologist rheumat and x-rays.
Then the diagnosed went upon bilateral radial tunnel syndrome, but that eventually also fell to the ground.

My pain is primary in my elbows, and that is where it started, right beside the epicondyle, in the supinator muscle and it is very sore. I then started having pins and needles in my hands and electrical shocks up my arm. I have very bad posture and have also lost the natural curve in my neck.


Then i had a nerve conduction test made by a very experienced (45 years) Neurologist, who concluded bilateral pinched nerves in the thorax propably in the plexus brachiallis, furthermore he ruled out carpal tunnel and radial tunnel.

Now after 3 rheumatologists, 1 neurologist, 2 nerve conduction tests and endless anti-inflammatory gels and acupuncture i think i finally have a diagnose. TOS

[ladylaura418]

Hi all,

I am comforted and relieved to find this support forum. It's disheartening and frustrating to feel weakness and in pain every day, and no one can see why it hurts. I'm a 24 year old female.

Anyway, I believe I developed TOS from repetitive strain at work. I used to work in a mental health facility, where we had to restrain teenage girls multiple times a day. Last January and February, our restraints increased to over 40 in the month, and it was at the end of February that I started to notice my symptoms.

Fast forward to September 2011, and I feel like I've been around the doctor block. I'm fortunate to live in Boston, MA, where we have so many great doctors and medical institutions. I've been to my PCP, a physiatrist, an OT, a vascular surgeon, a neurologist, and a thoracic surgeon. After these folks and lots of tests, a diagnosis is still inconclusive:

• Xray - no extra rib
• EMG - no abnormalities
• nerve conduction study - no abnormalities
• PT- my strength decreased by two thirds in five weeks, so it was not helpful
• CT scan - no abnormalities
• vascular study - the only test that indicated loss of circulation

I'm now awaiting to hear about Botox injections into four muscles (two on either side). MGH's Dr. Donohue is working to get clearance from my insurance company.

In the meantime, I continue to have daily struggles. My pain and weakness are sporadic, and there are now two days alike.

• • When hands/arms are in a raised position, hands become pale and appear to have lack of blood flow
  • Weakness in grip and strength
  • Aching in hands and arms (feel “limp”)
  • chest pain
  • elbow pain on both sides (more often left side) in the notch between the two bones on the inside of the elbow
  • “odd” sensations in pinky and ring fingers on my left side (burning, tingling)
  • Pain where collarbone meets shoulder
  • Tension and tightness in neck and shoulders (frequent)
  • Swelling of hands – veins “pop” out (a few times a day)
  • Overall loss of weight and sometimes lack of appetite

Glad to find everyone here.

Take care.


**placed a copy of your post on the main TOS page here-
http://neurotalk.psychcentral.com/sh...055#post810055

[chroma]

@LadyLaura418, We have a lot of overlap in our symptoms and I've made some progress, so I thought I'd comment:

The #1 thing that helped me was elevating the arm on the symptomatic for the purpose of lifting up the collar bone/shoulder girdle in order to open up the space underneath it, to reduce compression.

In other words, if TOS involves compression under the clavicle, then raise the clavicle. I found out later from literature than some people were already doing this as part of testing for TOS. I used it for relief. :-)

I do this elevation when watching TV, reading and driving (it's my left arm so I just prop it on the door). When I walk, I don't let the arm hang down, but prop it on a hip, a top of a pocket or in a pocket. When working at the computer, I have books on the left side so I can prop it periodically.

The huge reduction in symptoms was further confirmation that I had TOS.

Here are other things that helped:

http://neurotalk.psychcentral.com/post802248-72.html

Good luck.

[lexy0819]

Hi Everyone,

I was formally diagnosed with TOS about 3 months ago but its been an ongoing run around for the past 5 years. 5 years ago I started to notice some tightness in my shoulder and feeling of a rubberband just wrapped around the upper part of my right arm. Then the swelling came along and all my clothes started to fit differently. I was working in the therapy department of a skilled nursing facility at the time and talked to one of the PT's about it. She checked it out and recommened I go see an ortho surgeon. After 2 months of rehab, MRI's and CT scans the doctor was just lost on what to do. Then he gave me the scare of a lifetime when he referred me to a breast specialist in thoughts of breast cancer. She blammed it all on the underwires of my bra and told me to get rid of them and move on with it because nothing was wrong with me. I was 19 then. Here I am at 24 and in a month I'm having surgery to have my first rib removed on my right side. The pain and swelling has progressively gotten worse over the past year. If it wouldn't of been for my new ortho surgeron and the PT he sent me to- we would of never got to this point- even thou the ortho told me from the beginning when I first went to him 6 months ago that this is what he thought it was- he wanted to do eliminate all other possibilities but we weren't giving up until we knew what it was. All x-rays and scans were normal, MRI showed no problems, Nuero said all muscles were functioning well, but the pain in my clavical area was unusal and swelling was something they couldn't explain. Then the thoracic surgeon dx me. I put the surgery off because I was in the midst of planning my wedding and couldn't move the date- but now its far worse than it was. I have knots all through my arm and can't remember the last night of sleep I had. Doing my hair in the morning is a pain and my passion for drawing and painting is just an after thought because I can't hold a brush like I used to due to the numbness.

Just looking for reliefe and anyone who can relate because its like the world just thinks I'm crazy....

[ladylaura418]

Hi Chroma,

Thank you for your advice. I will certainly try to think of ways at which I can open the thoracic cavity when I'm going about my daily tasks.

I appreciate your thoughts and advice!

[chroma]

You're welcome!