Okay yeah. The bottom portion of my scapula just out at rest, but when I get down to do push ups or any front loading exercises it looks a lot more like winging. I have had 2 EMGs on my ulnar and median nerves and they came back perfectly normal, which is upsetting in a way because it made my neurologist doubt my symptoms. For some reason he was not interested in looking at the conduction from any other nerves.

And similar to you, the more I mess with it the worse it gets.

Yeah sure.

So when I'm not flared up I am mostly okay. I don't lift heavy anymore but I still run track and workout my lower body hard, so to everyone else I am mostly fine. But flare ups are a different story altogether. I get the dull/diffuse difficult to locate pain in my shoulder and tricep that just kind of sits at a 2/10 on the pain scale, my hands throb with my pulse and I have this gross pulling feeling down my arm in between my bicep and tricep. My shoulders/shoulder blades crack and grind when I move my arms around laterally and I feel like I have dead arms if that makes sense. Like it feels like I just did a rock climbing workout and arms and shoulders are just dead. I also have a sharp pain between my shoulder blades that is exacerbated by taking deep breaths or turning my head, which is absolutely the worst. I usually just take aleve and hide in my room until it reduces.

Flare ups are super weird, like I have had this since I was 17 (21 now) and I still am not 100% sure what causes them. They just seem to happen. If I decide to say **** it and lift really heavy on my upper body or wrestle with one of my friends that will for sure cause a flare up, but I can also get them from sitting and studying/playing video games. I now have a standing desk which helps a lot. Another sure fire way to get one is to lay or sit on anything soft like a couch or bed. I know it probably sounds silly but I have to sleep on the floor flat on my back, sit with perfect posture, or stay standing.


I am rambling a bit, but yeah that's the gist of it.

This sounds really similar to what I have experienced. I was a heavy weight lifter - and now I have to take it very easy or it will surely flare up. I also have a stand up desk which helps a ton. Reading, using an ipad, or even checking my phone will cause irritation. I refuse to sit in couches as well, have to keep posture perfect as much as possible. If I sit in a couch it causes a flare every single time. MY thoracic spine/shoulder blade locks up. I also flare up for no particular reason at times. I try to stand as much as possible. I sleep on a very hard bed...soft bed and I wake up with that nasty spasming/burning feeling in neck, thoracic spine, upper arm and shoulder blades. I used a theracane for months and it really just made things worse. Countless massage therapists and Physical Therapists without really any relief.

If I were you, I would try to find a neurologist who is skilled at doing an EMG on the brachial plexus. They are hard to find...I went to 2 other physicians who said my nerves were fine just like you, the 3rd one said I had chronic suprascapular/dorsal scapular neuropathy which explains the symptoms. He is the only one who performed the EMG on the brachial plexus. I would bet the problem itself lies above the collarbone.

Also, I had surgery for thoracic outlet syndrome 3 years ago hoping that it would stop the pain in between the shoulder blades and correct the scapular winging/tipping. Unfortunately, the surgery did not help at all. The spasm and irritation is still there and the scapula is actually worse than before. My supraspinatus muscle was visibly atrophied after the surgery, meaning the doc probably irritated the suprascapular nerve even more while performing the surgery. I went to one of the best TOS surgeons in the country - Dr. Robert Thompson. If I could go back, I would have never had the surgery. Now I'm dealing with all sorts of new issues because of scar tissue surrounding the brachial plexus nerve roots...confirmed by MRI.

Im so sorry to hear that. It is very dissapointing because I always thought the surgery was my ticket to freedom (ha). Did you have scalenes removed? What was the procedure exactly. Again im so sorry. That is horrible. What else have you tried? I just don't understand why surgeons move forward with procedures that they aren't sure will work. Its pretty a shady considering how much it ends up hurting people? I dont know.

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.

It's confusing to me why the scalene injection would cause symptom relief but the surgery wouldn't? It seems like that is usually a pretty good sign that the surgery will work.

Everything you have written is identical to my situation including the symptoms, surgery performed (except I did not have pec released), medicines tried, and nerve study result. I recently went to Johns Hopkins where they did MRN of brachial plexus and another nerve study. My suprascapular nerve is "chronic abnormal" although that was released seven years ago with no change. The MRN showed nothing but muscle atrophy and some scarring. I also had one of the supposed top surgeons (Pearl) and even had the 2nd surgery to remove scar tissue which did nothing. I only did this because the initial TOS surgery somehow gave me significant relief for a couple of months. Initial surgery was in 2012 and scar removal in 2014.

I am currently taking Opana ER (morphine) but I am thinking seriously about going through the withdrawal steps and doing without as it really does not help. About the only medicine I have not tried is one of the tricyclic antidepressants like Nortriptyline. They suppossedly have significant side effects but it may be worth a try from things I read.

The stuff you mentioned about hormone replacements sounds interesting. Please keep me posted. Feel free to PM me as well.

Hi I am interested can you pm me? thanks,julia

Yes, I sent you both a message.

-Sean