Originally Posted by b_2790

Hi all, just found this group recently and wanted to share my story.

I feel like this is going to be a long post... Honestly, I haven't ever come across so many stories that touch me and my own experiences so deeply. I find myself reading and reading and reading, so hopefully everyone won't mind a long post.

I've been diagnosed (yes, after lots and lots of confused doctors, extra pointless tests, and tons of referrals) with TOS on my left side. They *think* that I have compression of the brachial plexus due to some abnormalities in my ligaments (30% larger than normal). I have complete loss of bloodflow in both arms if I put my hands over my head, almost immediately. I have constant semi-numbness (50%) in my left hand fingers (left two) due to ulnar nerve compression. I have almost constant pain in my left shoulder, usually radiating from the end of my clavicle (near the shoulder socket) and especially in the area where the nerves and small bicep head rub over the shoulder bone.

I have a LOT of trouble sleeping. I have a hard time sleeping in almost any position, and the very strange positions that I do find help also flare up my neck and back, so it's always a trade off. Sharing a bed with my girlfriend always leads to a mostly sleepless night, constantly waking up with completely numb arms or severe/throbbing pain in my shoulder or arms. I wake up and use the bathroom 6-7 times a night and I'm pretty sure it's only because my shoulder pain wakes me up.

These symptoms have been around for 7 years or so, but maybe longer. I can identify two major periods of increased severity. The first was when I was 19 and had a MAJOR flare up trying to get back into swimming and weight training. A doctor told me it was a torn labrum (SLAP tear, usually in pitchers and swimmers from repetitive motion) after an MRI or two. I chose not to get surgery on this, as I had no money and was in college, spending loads of loan money already. Looking back, that year was probably one of my hardest. I must have been sleeping terribly, I did bad in classes, I was constantly forgetting things, my relationship with my girlfriend went from great to awful.

When I was 22, I hurt my back lifting weights (usually quite smart, but I believe my ego might have gotten the best of me that day). I think this was really the point where my life got out of control. I was heading into a doctoral program and just couldn't take time off. My posture is always terrible and has always been terrible. But, with my back messed up (MRI showed three bulging discs, but it was 6 months after the fact, with a probable tear of the fluid sac around a disc already healed) I have trouble not sitting up straight. BUT, my TOS flares up when I sit up straight. So I am always in pain. Nothing really solves either of these problems. I did a year of physical therapy, had numerous appts with specialists, have been on tylenol and ibuprofen around the clock for months at a time until I'm too sick of being medicated to do it anymore.
I'm on gabapentin (sp?) for nerve pain, but that only seems to mitigate it slightly... I've also sought psychiatric help because (I think) my lack of sleep has led to extra stress and I just wasn't the same person that I used to be. This has REALLY helped me a lot. I've been on Zoloft for about 6 months, and I can't believe how much it has helped me. I feel like myself again, for the most part. Still in pain and still having trouble sleeping, but I can finally manage my emotions and live my life in a similar fashion, even with flare ups.

I do a LOT of exercising to try to keep everything strong. I have read around and seen a lot of people recommending no weight training or activity for TOS symptoms, but personally I've found that keeping my muscles strong HELPS my day-to-day pain levels. Sure, it might hurt a lot during the exercise or from week-to-week, but a month later I feel better overall each day. Sometimes I can even sleep well.

Emotionally, this has been a wild ride. My senior year of college was really hard. I think I was severely depressed, but I got paired up with an on-campus counselor that pushed me away from medication. Terrible sleep, terrible relationships, always upset. I kept having thoughts of suicide and that's why I was seeing the counselor. Thankfully, I can think through the consequences of suicide and they seem stupid at all times, so it's just ideation. Still though, not where I thought I would be on the cusp of graduating college.

Now, in my second year of a doctoral program (how the hell have I managed to get this far, given the above??) I'm scheduled for a surgery for a ribectomy of the first rib on Dec 12th. The doctor (Hershey Medical Center, Hershey PA) plans to make an incision in my armpit and hopes to have the procedure be as minimally invasive as possible. They have a one month recovery hope. I do too, obviously, but I'm also wondering if that's too good to be true. Does anyone have a story similar to mine in terms of surgery? I've looked around and it seems like a lot of people have had severe TOS from trauma and have had other muscles removed... I feel for all of you! I was originally weighing the option of having a very similar procedure done to me with an outlook of a 1 year recovery and it DEFINITELY broke me to even think about going through that. Seeing another surgeon and telling me it might only take a month with their technique was a blessing.

I hope that surgery brings me relief and normality. I feel like that might be a dream though... I don't even feel 100% comfortable with my decision to get surgery (or that I NEED surgery) because I'm so invested emotionally in this outcome. Giving each option an honest shake has been difficult.

I'm really hoping to find some individualized support here. This has been such a trying experience and, as I see with so many others' stories, it is so hard to find someone to talk to who understands everything. Just sitting my friends down and telling them my story takes hours. Doctors look at me (6'3", 200lbs, in shape) and think I'm lying or trying to get attention. I am so tired and hurt and exhausted from trying to be heard that I feel like I can't even cry for help appropriately.

All the best,
Brad