It's ok. I'm keeping faith that I will overcome it one day. I'm in medical device sales for my job so luckily I get to talk to doctors every day. I have tried pretty much every med you can think of...none of them really work (toradol injection, lidocaine, NSAIDs, valium, MS Contin, Klonopin, Cymbalta, Lyrica, Neurontin, among others). I don't take anything right now besides supplements (fish oil, ALA, Metanx, vitamin d). I would rather work on reversing the neuropathy than mask it. I just got bloodwork done recently and it revealed that my hormones plummeted. They are saying that they believe the chronic pain and stress on the body has resulted in depleted hormones like testosterone. I've researched this quite a bit and have found out that if you're low on hormones, the chance of controlling your pain is slim to none.


My physician has decided to try something that I am pretty excited about. I had to talk him into it - It is called Human Chorionic Gonadotropin. HCG produces testosterone, progesterone, estradiol, and thyroid. It is a neurosteroid that can help in pain reduction through neurogenesis and tissue healing. I'm actually starting it today, so we will see how it goes. This is something that could possibly reverse the nerve damage.

The problem with the TOS diagnosis is that 99% of people diagnosed is through symptoms. 1% of people diagnosed have true TOS - They either have cervical ribs or an elongated C7 transverse process. All of those provocative maneuvers they do are useless because the false positive rate is so high. I don't understand why they even do them. My pulse obliterated on all of them but the clinical correlation is nothing - too many people have the same thing happen without TOS so they should just stop using it period in my opinion. They also believed I had on odd case of TOS.

The surgery I had was a supraclavicular thoracic outlet decompression including anterior and middle scalenectomy, brachial plexus neurolysis, resection of the first rib, and pec minor tenotomy. The surgeon told me after the surgery that I absolutely needed the surgery...He said I have right brachial plexus compression between the scalenes, first rib, musculofascial bands and perineural scar tissue throughout the area. Brachial plexus compression also in the right subcoracoid space which is why they did the pec minor resection. My post op report states that I had an extensive amount of dense post inflammatory scar tissue surrounding the nerve roots.

The scalene injection helped a ton before the surgery...sometimes that is used to help with diagnosis. Multiple EMGs show that I have Suprascapular neuropathy and they can do a separate decompression surgery for that. The problem is that I have had a suprascapular nerve block injection done and it didn't help at all.

I posted some links in this on hormones/pain control, HCG, and the atypical type of TOS from dorsal scapular nerve compression. They wouldn't let me submit post with the links since I have fewer than 10 posts... so let me know if you want them I can pm you.