Dacello,

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, :hug:

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.

Thank you all! I will work hard and update on my progress. :). So happy that there are people out there that help! :) :grouphug:

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.

https://www.youtube.com/watch?v=Z4aXRj0uIj4

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.

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!
*

I'm glad you found your answer...
I agree the mind can do very good things , as well as bad things to us..

Hello everyone,

Just wanted to on one hand say hi after a two-year silence and wish everyone good health. I also want to share again my gratitude, since I still remember this forum as a place that helped me a lot, to know that I am not alone, that there are others who are going through hardship and who are willing to give good advice and help.

I also want to give an update on my condition. When I was diagnosed with TOS in 2016 by both Dr. Freischlag and Dr. Thompson I came here and realized that people who recover, almost never post and someone said: “of course, those that are well, no longer come here.” So I wanted to tell you that now, three years and 2 months after my diagnosis, and two years and 11 months since the beginning of my recovery, I still am doing well (and I still come here occasionally).

My symptoms are completely resolved, and while two years ago (in 2017, when I posted last) I still had bothersome issues, such as burning and tingling and occasional pain of level 2-3, today I have no symptoms whatsoever. The condition has completely resolved and I have no limitations in playing my instrument, typing on the computer, or lifting heavy objects.

I just wanted to post this because I know there are a lot of people - I used to be one of them - who come here looking for answers, and I wanted to let them know that not all is lost and that there are people, like myself, who achieve recovery even when all odds seem to be against it! And once again to thank all the kind people of this forum, who keep helping with advice and kind words those who are in need.

Hey! Glad you are doing well. Mind sharing what tools helped your recovery? Surgery, physical therapy etc.

I have no real suggestions for you, as I don't know much medically and/or about your situation. I was reading the thread to see if anyone suggested anything for you that I might try for my condition. That said, you made one comment about wishing you could just get relief "in that one spot" and I thought of my Lidocaine patches, and how when one area or another is or has been screaming, I put a patch there to calm what I feel down. Also, I have used a medication, Voltaren Gel, which calms things down in areas where nerve pain presents. I know Voltaren isn't for nerves, but if the nerves are "angry" then the muscles, ligaments, tendons and every other thing in the area is also angry, tight, and aching with pain in it. My dx is CRPS, and Fibro, but my experience is that it's not "just nerve pain" ever with me.

There is an off label (to say the least) use of a thing called DMSO, which is literally sold at feed and seed stores. I use it sometimes in areas that are "screaming" and it does something for me. That said, I can't use it on my shoulders or in really tender places. There is a lot on the internet about human use of DMSO, and it's not approved by the FDA....but lots of things aren't, and my experience with DMSO is positive, so I want to be able to say what I do with particularly throbbing areas on my body. I've even mixed the Voltaren and DMSO to get the Voltaren down in there, so to speak. Again, this is my home remedy spot treatment to go after a particularly painful place.

All the best and I hope resolution is found for your condition so that you can continue to do what you love. Surely with time and finding the right doctors, you will get the resolution you seek. I pray, and will pray for that.

Thank you CRPSinSC!

I don't know if you read my thread, but my condition is actually fully resolved. I am fully recovered and no longer sick. That is why I posted my message a few days ago. :) Thank you so much for your kind thoughts!