Originally Posted by elap

Dear Heybro,

I too am seeing Dr. Donahue at MGH and he recommends surgery. This is after years of increasingly debilitating symptoms and going through what so many with TOS experience: a parade of doctors, numerous misdiagnoses, failed treatments, chiropractors, massage therapists, acupuncturists, physical therapists, meds, alternative treatment . . . etc. I'm wondering how you're doing. Surgery terrifies me, but I don't think I have many other options at this point.

Emla

Originally Posted by heybro

Emla,
You have Nothing To Worry About. That is what I wish I could say to myself if I were talking to myself before surgery. MGH, Dr. Donahue, are miracles in the flesh. You have nothing to worry about at all. Surgery is nothing compared to what we have already gone through - HONEST! Expect to sleep a lot and go easy. The worse is over; I promise.

Originally Posted by Dom9889

Hi there. I'm an 18 year old guy who just had a transaxillary first rib resection just a week ago. I was diagnosed with Neurogenic TOS and was told I had a small tear on my anterior scalene muscle. My general symptoms were constant tense shoulder and neck muscles, a toothache throb feeling that wouldn't go away, and sharp pain behind the shoulder blade. After a year of these symptoms and quitting weight lifting, it went from constant muscle tightness and pain behind the shoulder blade to more of a nagging extremely weak feeling. As atrophy set in popping was a constant and lifting things caused pain. I opted to get a first rib resection and I wouldn't have it any other way. The procedure was done at Rush University Medical Center in Chicago, which was an outstanding hospital. My surgeon used Video Assisted technology (VATS) that left me with only a two inch scar in my armpit. I stayed overnight and went home the next day late afternoon. The pain was no worse than anything I have already suffered through, the main culprits being numbness and a simple pain radiating slightly behind the scapula itself. Within the first few days I experienced stiffness and slight pain at the elbow and wrist, which seems to be from the inflamed ulnar nerve. Weakness was also more prominent after surgery. All the tenseness that was in my left trap was completely gone, leaving me in awe at how soft and stress free it was. After an entire week has passed, I find the only annoyance is the swelling and the fact that the muscles are still extremely week in the arm. Every now and again my wrist has a small tinge of pain to it but nothing compared to the pain of TOS itself. With the exception of popping, I still have most full range of motion. My original cause of TOS was a fractured first rib that would not heal, and I'm lucky enough to say I cannot even tell the rib is gone. As swelling goes down and the healing is continuing, I'm feeling more and more back to normal, back to a happy full life. Although your symptoms are a lot more severe, I thought you should hear my story. Best of luck, no one should have to go through what we did.

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

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

Originally Posted by elap

Thanks for the reassurance Heybro. Also for all of your detailed, informative posts which are very helpful. I hope you're doing well and feeling better with each day. Dr. Donahue does indeed seem to be an extraordinary doctor; thoughtful, generous with his time, clearly one of the best in this field, and none of the ego bs or cluelessness I've encountered with so many other docs (and I've seen dozens over the last 4 yrs trying to get to the bottom of these bizarre symptoms). Did Dr. D recommend post surgery PT? (apologies if you covered this elsewhere - still getting the hang of how NeuroTalk works).

Originally Posted by Dom9889

Hi there. I'm an 18 year old guy who just had a transaxillary first rib resection just a week ago. I was diagnosed with Neurogenic TOS and was told I had a small tear on my anterior scalene muscle. My general symptoms were constant tense shoulder and neck muscles, a toothache throb feeling that wouldn't go away, and sharp pain behind the shoulder blade. After a year of these symptoms and quitting weight lifting, it went from constant muscle tightness and pain behind the shoulder blade to more of a nagging extremely weak feeling. As atrophy set in popping was a constant and lifting things caused pain. I opted to get a first rib resection and I wouldn't have it any other way. The procedure was done at Rush University Medical Center in Chicago, which was an outstanding hospital. My surgeon used Video Assisted technology (VATS) that left me with only a two inch scar in my armpit. I stayed overnight and went home the next day late afternoon. The pain was no worse than anything I have already suffered through, the main culprits being numbness and a simple pain radiating slightly behind the scapula itself. Within the first few days I experienced stiffness and slight pain at the elbow and wrist, which seems to be from the inflamed ulnar nerve. Weakness was also more prominent after surgery. All the tenseness that was in my left trap was completely gone, leaving me in awe at how soft and stress free it was. After an entire week has passed, I find the only annoyance is the swelling and the fact that the muscles are still extremely week in the arm. Every now and again my wrist has a small tinge of pain to it but nothing compared to the pain of TOS itself. With the exception of popping, I still have most full range of motion. My original cause of TOS was a fractured first rib that would not heal, and I'm lucky enough to say I cannot even tell the rib is gone. As swelling goes down and the healing is continuing, I'm feeling more and more back to normal, back to a happy full life. Although your symptoms are a lot more severe, I thought you should hear my story. Best of luck, no one should have to go through what we did.

Originally Posted by heybro

PT is something you do before surgery - to try to avoid surgery, not after.