Hi Dave,

I'm sympathetic to your problem. I wish I could provide more encouraging info. to you. I've had TOS for about 3 years and it was misdiagnosed as a nerve root issue when I had a C6-C7 anterior neck fusion. The surgeon who performed that surgery sent me for a discogram prior to the surgery. That procedure gave me a disc infection which ultimately put a whole in my C5 vertebrae. Even after the infection cleared and the anterior surgery was performed, I still had the same neck pain that would run up the back of my head. I had, and still do, have terrible trap and shoulder blade pain. My second surgeon felt that the anterior fusion never created a union and that the infection caused severe damage, thus the continued pain. He decided on a posterior approach, which involves cutting through the back of the neck and muscle tissue which attaches to your scalene muscles. I now have 2 rods in the back of my neck. After all of that painful surgery and the infection, I still have the same pain! The pain runs down my right arm and into my hand. Pins and needles as well. Pain also constant at base of my neck near the brachial plexus. At this point, the pain is now spreading to my left side as well. Constant pain on my collar bone near left side of brachial plexus. Pain goes back and forth on both sides of my body. Right arm will fall asleep on occasion as well as left hand. I'm in pain all day, every day. So I feel for you brother!

What's amazing to me is that no surgeon found my TOS. It was my physical therapists. I've had 2 P.T.'s. Adson tests proved positive twice. 8 months of Physical Therapy has not helped me. I did go for massage therapy weekly for a few months. I had some temporary relief in the very beginning but like I said, it was very temporary. It was more like relaxation therapy. I went to a pain management dr. who refused to believe that the condition existed. He would not give me scaline injections. He put me on Neurontin for nerve pain. Terrible side effects and no relief. I take dilaudid and valium regularly. I switch off with heat and ice but at this point I can't tell you which works best.

Your case sounds much more severe than mine. But from my experience, I feel that P.T. only made the condition worse. Where I live in South Carolina, no one is competent enough to diagnose or treat TOS. I'm going to the Mayo Clinic in Jacksonville, FL in 2 weeks. Mayo has experience with TOS, particularly the one in Minnesota. If they can provide me with more information then I already know, I will let you know.

Feel free to vent anytime.

Mark

I am in the uk and doctors have heard of TOS no one else even knows it exsists. I have TOS and PMS i havnt had any surgery yet so dont know when that is gunna be. I am taking paracetamol naproxen and tramodol but the only thing that takes the edge off is cannabis not the oil ya want something high in THC its the only thing i have found that works

New here as well, TOS for 6 years. Took me 2 years of wanting to die before I got on a better path. Neurogenic, however I believe in the beginning I did have vascular symptoms. I was preparing for the blood clot, hasn't happened yet. No surgery, PT did make me feel better at the very beginning, but worse as the therapy progressed. On this side of it, I realize the thought behind the therapy was all correct, but it was too fast. I believe my problem is my really tight pec minor. Some of the therapy engages those pec muscles that were already pressing my nerves, only made it worse. After PT, I had to stop exercise completely, let things calm down, and restart one exercise at a time to eliminate the bad ones. At my worst, I was taking 3 or 4 valium per day for muscle relaxation, and tramadol for the back and neck pain. It helped immensely. Today, I still do my PT, take 1/2 valium a day, no tramadol. I moderated my life, which means I cut back my hours as a hairdresser. In the last couple weeks, I've joined a gym, being very cautious what I do there. Lots of stretching. Weight machines with very little weight are making me stronger, anything that uses chest muscles makes me hurt. Yesterday I added some jogging to my workout. If I feel any tingling in my arms, whatever I added yesterday goes out the window. The good doc said there is always surgery, that is very likely to make me regret surgery. If a pill makes life tolerable, I choose a pill. I deal with it daily, my work is a challenge, I am still standing and functional. You have to get control of it, and manage it like any other chronic problem. I know now how strong I am though I am weak. : )

Hi Dave,
I just joined the site today and saw your post. I had a my first rib resection, scalenectomy and brachial nerve decompression in October at the Mayo Clinic in Rochester MN my arm pain resolved after surgery however I still have issues with some fingers, pain in the front of my shoulder, armpit. I developed problems with shortness of breath, chest pain and swelling since my surgery. Ever time I would go to physical therapy or work it would aggravate my pain/symptoms. I just went for my follow up check up at The Mayo Clinic and my doctor is checking me for pectoralis minor syndrome by doing a pectoral minor block and if the block works he is going to do a pectoral minor tendontomy (cut the tendon). Because apparently you can also have compression of the nerves in that area as well. My recent MRI showed I also had developed excessive scar tissue/swelling and the doctor said I have basically a frozen chest. Hope this helps.