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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.

Coming to terms

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Old 03-03-2016, 01:52 PM   #11
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I am glad you are getting some consults. It think it will help you decide what direction to go and has the potential to give you some relief for now. Surgery is a big decision and always has the potential for unexpected outcomes no matter how good the surgeon or how perfect the procedure. Getting more info about TOS and trying some other conservative measures first is a sound plan. You will know in time what you need to do. Nerves do take time to settle down once they have had an insult it can be hard to make a call. It can also be hard to figure out just what the problem is. I chose to have a peripheral nerve repair and it was the right thing for me but I was balled up on the couch from 9 am on and had exhausted all possibilities.

Find the best specialists you can, they have seen the most presentations and will have the most experience understanding what you're going though. I know it is scary having your livelihood compromised, especially one that is so very special. I hope you get what you need very soon.

Sending extra hugs,

Shine Your Bright Light
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Old 03-09-2016, 10:05 AM   #12
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Originally Posted by dacello View Post
Thank you Littlepaw for the encouragement and the advice.

I know this is really a question for the doctors, and I am currently scheduling appointments as recommended by all of you, here and there, but I wonder if in my severe case I am definitely looking at a surgery? What I mean is, if I have arterial and venous involvement (my hands are red and spotty when down, and I have no pulse in arms when elevated, or extended, or behind my back), plus he severe nerve involvement... if I ever want to play my instrument again... Seems pretty inevitable?

I have been playing since a little kid, for many hours a day, and of course this has been adding up. Now, I feel very lost because it is my living.

I guess I am asking about how successful are people in working out say with Edgelow protocol or other modalities (Feldenkrais, ART, massage, etc.) to regain complete "normalcy" or at least functionality. Or do they always go through the knife. In our music world the concept of surgery is a big no-no, but at the same time, one doesn't want to delay if the injury is fresh... (Or kind of)...
Try Edgelow protocol, many hours a day, it can work miracles, and since you have not had trauma, there is a very very good chance you will recover fast.
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Littlepaw (03-18-2016)
Old 03-10-2016, 10:44 PM   #13
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Thank you all! I will work hard and update on my progress. . So happy that there are people out there that help!
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Littlepaw (03-18-2016)
Old 03-12-2016, 06:35 PM   #14
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Best exercise I have found is roll up a towel long ways. It should be as long as from your neck to your hips. Lay down on a hard surface, I do it in the floor, and place the towel under your back and roll over onto the towel placing the towel right on your spine. Then force your shoulders to touch the floor.

You'll find it in this video.


It really helps me when I have a flair up. If you have vascular envolvement, you lower arm should be swollen more than the other. Wearing a compression sleeve will help. I wear one everyday.
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Littlepaw (03-18-2016)
Old 05-16-2017, 09:38 AM   #15
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Hello everyone,

It has been more than a year since I posted on the forums but I wanted to update you on my progress. Now, I know that some of what I am going to say is controversial, but I thought it would be important to share nonetheless.

Since I last posted (Feb 2016) I went to see both Dr. Freischlag at UC Davis and also Dr. Thompson at Barnes Jewish. Both of them diagnosed me with bilateral TOS and recommended a trial of PT - 6 weeks in the case of Dr. Thompson, who was actually really pessimistic about my options in conservative treatment, since I was already doing PT 3 times a week for 4 months without any improvement.
I tried Edgelow protocol for 2 months only getting worse to the point that I couldn't do the pelvic tilting - pinched a nerve in my back.... Anyway....

I was desperate. Workman comp case, healthcare access in America in general, finding the best surgeon, inability to play my instrument. And no solution in sight.

Then I kept reading online and kept finding stories of people recovering and the mention of one name... This is where the controversial aspect begins. The name is Dr. John Sarno. I first stumbled upon him while listening to Sharon Butler's tapes for her stretching protocol (which gave me minimal improvemt over 4 months). If you haven't heard of him, you might want to check his controversial claims of mind-over-body connections with multiple sources of pain - from common tendinitis to back pain to nerve pinching etc. And a repudiation of structural diagnosis.

Now, at first I didn't buy it, but my physical therapist kept talking about stress and the book (Mindbody Prescription by Sarno) stuck a cord with me...

Long story short - last July I plunged into Sarno's method. Which basically says ignore the pain and resume all physical activities. So here is my report:

As you know, if you read my posts, I was in the most dire and desperate of situations, and by June, weeks away from a massive bi-lateral surgery. Yet I committed to Sarno's method, stopped all physical modalities, and tried to resume all normal activity. I started journaling like crazy and uncovered unbelievable amount of insecurity and stress in my mind compounded by pain and inability to play. This made me even more convinced and actually angry. I yelled at myself and pushed against the pain.

I started playing my instrument (the cello) back in July again, couldn't play for more than a minute at the time. Heck, I couldn't even sit to type at the computer for more than 30 seconds without overwhelming pain....

Well, I am happy to report that by December I managed to sustain a national tour. In February I performed a recital of complete Bach works for cello - 3 hours and 20 minutes of music by myself with two 20 minute breaks. And just last week I returned from another 3-week performance tour, which included 14 concerts in the US and Canada, countless rehearsals and many hours on airplanes, carrying my cello, suitcases, and briefcases.

I still have random symptoms but I do not care and I ignore them - and the more I do the less they appear. Since I have my whole life back and I worry much less about the future. I consider myself fully recovered - I do not do any therapy and I run, walk, play the cello, type on the computer and enjoy life as much as I could. Also, I am a better cellist than ever before - I worry much less about making mistakes and that makes me play much better

I couldn't ever imagine that this would happen after all the darkness through which I, and my wife have been. And even now I am writing this message with certain trepidation, with that nagging "don't jinx it". But it's my stupid personality. I know how crazy this must sound to you but it worked. And I have been diagnosed by two leading physicians and done countless physical modalities to no avail: PT, acupuncture, chiropractic, massage....

So, here you go! You can add me to the success stories! Love and hope to all!
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Akash (05-17-2017)
Old 05-16-2017, 11:34 PM   #16
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I'm glad you found your answer...
I agree the mind can do very good things , as well as bad things to us..
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