23 y/o male TOS prepping for surgery
 

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

Get to the best most experienced TOS docs you can find , vascular surgeons it sounds like what you need to look for.

[some abnormalities in my ligaments (30% larger than normal]

this should show with imaging , so is verifiable - if so that is a plus to know what might be the cause.. or part of the cause.

Has anyone helped you work on your posture?
I don't know if expert chiropractic might be helpful?
The one I found was very helpful and did PT modalities also.
ultrasound, low level laser, trigger point work, IF stimulation..etc..

this should show with imaging , so is verifiable - if so that is a plus to know what might be the cause.. or part of the cause.

Has anyone helped you work on your posture?
I don't know if expert chiropractic might be helpful?
The one I found was very helpful and did PT modalities also.
ultrasound, low level laser, trigger point work, IF stimulation..etc..[/QUOTE]

Thanks for your reply! Imaging with ultrasound did show the increases. Both sides are affected, though the left is more pronounced and also has more pain associated with it.

I worked on posture throughout my time in PT (1 year), but we had difficulty tackling the posture issue because of the synergy between my lower back pain (i.e. need to sit up straight) and my shoulder pain (pronounced if my shoulders and back aren't rounded forward, and couldn't get the tendons in the shoulder area to relax naturally to the normal position). I still do scapular stabilizations exercises, various back stretches, and tons of shoulder strengthening exercises to at least try to mitigate a bit of the pain.

I also had two massage sessions as a gift and those were wonderful! I have a lot of aches and soreness under my scapula and in my rib areas on my back, my neck is constantly stiff and sore to touch, etc. But, without the funds to really dedicate to going consistently, I tried to work on things myself. A foam roller helps some with the back and upper thoracic area, but the front shoulder area is harder to get to in general.

Brad

Brad, thanks for sharing your story, and welcome to the forum. First, you are not alone, and u r part of this family. As a man dealing with TOS for twenty years, I know what u r going through. The numerous doctors, test, and people not believing our story. I'm heading for my third surgery in Dec, so I know.
Second thing, keep fighting. U have too much to live for to give up. I've been there with the suicide thoughts, but with the LORD help, I got through it and will continue to get through it. If u could, stop focusing so much on the pain, and turn it to into power. If u don't, it will get the best of u.

Third, try and work on your posture. The doctor that's doing my third surgery, told me to sit and walk upright. Also when u r walking, put ur arms down, and move them back and forth. This opens your scalene muscles. Also, make sure the doctors u r dealing with knows what they are talking about. I've had so many doctors that didn't know anything, only guessing. Don't let this linger as long as I have, it will get worse. But it wasn't me that caused my 20 years of TOS. If u think surgery is best, GO FOR IT. U need to get this resolved.

Thanks again for sharing, and we look forward in hearing about your surgeries and other stories. If u have a chance, read about my story with TOS for 20yrs. If u need to someone to talk to, feel free to send me a PM. It is always good to get this off your mind.

God bless, and keep fighting!!!!

Brad,

I'm sorry to read all you're going through. It's been ovewhelming for me and I'm 51, with some resources. I can't imagine going through this in my 20s, while getting a doctorate.

The main issue, if you are pursuing surgery, is to get yourself to the most experienced, most expert surgeon you can find and afford. It really matters who does this surgery. The other thing that jumps out at me from your post is how much excercise you are doing. For many of us with TOS, that kind of exercising can make symptoms worse. TOS does not present the usual "no pain, no gain" dilemna. If your pain is increasing due to an activity, it's a good thing to curtail it.

I had surgery 8.5 years ago and it was unsuccessful (so put my experience in perspective), but it took me 2 months before I could function at all. I would say a recovery of one month is quite ambitious, especially if you are going right back into school at the end of that month.

I understand how taxing this experience is -- physically, emotionally, psychologically. The chronicity of the pain is hard to take and impossible to plan for. I'm glad you are in a better place now than you were a few years ago.


Take care and I will be sending good wishes your way.

Kelly

When is your surgery?

brad,
you sound like a survivor.
i don't think one month is going to do it. many doc told me the same thing. i went to donahue at mgh who told me 3months. i didn't like the sound of that.
well i am 3 mo post op w/ dr d and yes, it takes a long time to heal.
my surgery went very well - and even so it will be a year b4 i know if it is working or not.
i hear the armpit is harder to get to everything.
have u done pt? look up inst of physical art for rib mobilization pts.
mark

Hi Brad! Welcome to the forum! I cannot tell you how nice (sorry) it is to meet another person who Doctors didn't take seriously! I have A/V tos and had two completely successful surgeries (left and right side rib resection/scalenectomy) in '11 and aug of this year. I was previously looked at though, prior to meeting my excellent surgeon, that it was "impossible" for me to have this condition, it "must" be something else, I "looked" too healthy/fine/in shape, and "maybe" I was having an "allergic reaction" to lotion and that's why my arms/hands were turning maroon and swelling. Noooo, I had severe compression of my subclavian veins and arteries bilaterally. All fixed now though! ;)

As far as the surgery method, every surgeon usually has their own tried and true technique. Most boils down to how they have been trained, and how they feel they can get the best results for the patient. My surgeon uses the Transax technique as well, he felt that it gave him better access to the rib and scalenes while being able to work around and avoid the nerves easier. I appreciated his concerned effort, and it paid off big time!! Good luck in your surgery/journey! And congrats on your studies thus far!

Hi all,

Thanks for the best wishes and support. I'm still hopeful that my surgery will go well and I should know more in a few weeks after I have a pre-op with my doctors. I have also been looking into some of the PT exercises that you all have suggested, thanks!

I like hearing your stories. Of course, I especially like the success stories, but it's also really nice to hear about longer recoveries and failures. Doctors seem to be so surprised or new to TOS, in many instances, that they don't want to give any projections (hopeful or not). Honestly, I think the first eight doctors didn't even want to talk about TOS or surgery until I got nth opinions from more doctors. By the time you get to the ninth or tenth doc, you don't even know what to ask.

Good to hear from everyone, thank you!

can you send me a pm, tried to contact you directly.