Hi KY

I think good general fitness definitely makes a big difference to recovering, guess it means you have more reserves... I'm now 10 months post op and have been back to my normal fitness routine for a good number of months (including gym, judo, etc). I have numbness on that side of my chest and on my shoulder which I think is permanent, but it hasn't made any difference to my general fitness or ability to do anything.

Out of interest, I posted some photos of my scar on this site (paste "thread148013.html")

Like I mentioned on that thread - it actually is a bit wider and whiter now, but almost completely flat

Bex

PS I'm not sure why you couldn't PM - I've added you as a friend so hopefully you'll be able to now.

Someone with a good result from the surgery.. Im very glad to hear it.

I think you are very right though general fitness and prior health and age would have alot to do with how well you recover. Also the severity of the complications awswell.

I thinking people with more mild symptoms will have a much better result. So that is making me feel alot more positive about my situation. I also spend alot of time being active and working out and i really dont want to give that up.

KY -

I also had a positive surgical result. I am going on 7 1/2 years being symptom free on that side. I can do a lot with the hand and arm now that I couldn't do pre-surgery. I returned to my workout routine at some point after the surgery. I was considered a severe case at diagnosis (10 months post injury) with a positive EMG showing nerve loss and opted for surgery 9 months later when the situation was cascading down. I literally couldn't use my hand by the time I went for surgery. The muscles in the hand and forearm had atrophied. Doctors can not explain why/how the muscles recovered as well as they did. It took a good couple of years before the hand completely recovered. Now you couldn't even tell that I had a problem except on EMG where the nerves show some sort of regrowth.

I was just diagnosed TOS on the other side so I've returned. I hope to manage this through conservative treatment as the surgery and rehab is hard. If I can't control the symptoms, I will consider surgery sooner than I did the last time hoping for a fairly good outcome.

After tons of research I was happy to finally find this thread with other people's experience with TOS and decompression surgery. Therefore I thought I would add my experiences so far to help others just like this site did for me...

This whole thing started about 1 month ago when I found out I had a DVT (clot) in my right arm, after a 3hr clot busting procedure and balloon angioplastly I was diagnosed with Venous TOS/Paget Schroetter Syndrome. I saw a specialist at NYU and scheduled my 1st rib resection surgery.
I had surgery 6 days ago...June 9th

After surgery I didn't feel much of anything my shoulder/upper arm was very heavy feeling and numb. My chest also felt heavy due to my collapsed lung. I didn't have any drains just a chest tube to help re-inflate my lung. The tube was sewn right into my incision which was under my armpit. After time, I used the morphine pump for what pain I could feel to keep me comfortable. It was hard to find a comfortable spot to lay I needed to be propped up.

I didn't get much rest in the hospital due to noisy roomates (I was in a 6-bed unit at first to be monitored) and I had a few bouts of nausea/dizziness when they tried to switch me to vicodin. I stayed in the hospital (until Sun morning) a day longer than expected due to air left in lung after they removed the chest tube.

The 2hr ride home was tolerable, but the bumps were not fun! I have only been home for a few days but am doing pretty well. Minimal pain...more discomfort than anything. I have only taken a bath, and I can dress myself in anything that buttons or than I can pull up for the bottom. Nothing over my head. I have been out of the house a little bit each day, and moving around on my own pretty well.

My initial bandages were removed this morning I have a 2-3 inch scar under my armpit, my upper arm/shoulder area are still numb and very heavy feeling. It is hard for me to move my upper arm much, my range of motion isin't very good at the moment. I will be continuing with my exercises to help me with that. I was just told to do the "walking up the wall" exercise...

So for not even a week after surgery, I am feeling much better than I thought I would. I have just been taking Motrin during the day and 1 vicodin at night to help me be more comfortable. I am really thankful to be moving around without major limitations and pain.
I hope sharing my experience helps, reading others sure has helped me!

I was wondering how long people have experienced numbess for after surgery? My shoulder/upperarm area is still numb (6 days after surgery)....

Hi, I recently underwent a first rib resection and a partial scalanectomy. I was diagnosed with Paget Schroetter syndrome back in April (about 5 months ago). Initially I spent 4 or 5 days in the ICU on blood thinners and clot busters. I was meant to have the first rib resection shortly after that, but instead elected to take a couple more courses at my university before undergoing the surgery.

The surgery was on April 13th, about 4.5 weeks ago, and I'm pretty much back to normal. I've been working out again for a little over a week now, which is huge for me since I had gotten quite a bit out of shape over the last 5 months (by my standards at least, usually over the summer I spend about 1 - 2 hours a day working out). I was back to work a little over a week after the surgery; it probably could have been sooner, but my mom wasn't having that.

I honestly experience NO real pain. Some muscle soreness sure, aches and pains here and there, but nothing to write home about. I had an AMAZING surgeon. That's about the gist of it. I'll spell out the details below, for anyone who's interested.

The Long Story
Back in April, I was doing a workout that I've probably done a hundred times before when my arm just started to feel like it was going to explode. My friend who was there with me, doing the very same workout was a bit freaked out at how visibly swollen my arm had gotten. The veins were hard and bulging in a way that neither of us had ever seen. I tried to push through the rest of the workout, but the arm was just too discerning.

That night we went out, had a bunch of fun, I had almost forgotten about the incident with my arm. Then over the next couple days, I noticed I was beginning to have severe pain whenever I tried to move my arm. There was massive swelling throughout the arm and into the chest. Before long I could barely move the arm at all. I began seeing doctors a few days later and no one was sure what was going on. Muscle tear was what I kept hearing, but it just didn't really add up for me. I kept explaining that it had felt like blood was going into the arm and not coming out.

Eventually, I got an ultrasound. There was about 15cm of clot in my right subclavian. I was rushed to the ICU for an emergency procedure. I spent the next 4 days in bed, not allowed to move AT ALL. When it was over, I felt a lot better. I had regained about 60% of my range of motion (ROM) by the time I had left the hospital. A couple days later I had no mobility problems what-so-ever in my arm. At that point things felt pretty normal, but I only had to stress the arm just a little bit to be reminded that there was still a problem. I would need surgery to decompress (or releive pressure on) the blood vessel.

I spent the next three months on blood thinners, taking it easy. No strenuous activities, no alcohol (okay, I'm in college, so maybe a little alcohol). About a week before surgery I caught an annoying cold. By the date of the surgery I was just getting over it. Still quite a bit of drainage, and some sinus issues. A bit worried about that..

I went in for surgery, got prepped. When they rolled me into the OR, I was expecting to get a chance to talk to the Doc one more time before the surgery. I remember feeling really anxious, then the nurse asks"How're those drugs treatin you?", I go "What drugs??".. The next thing I know, I'm waking up 4 hours later in recovery. No real pain besides a soar throat from the chest tube. I could feel the pressure from the ice and bandages on my side, but for the most part it was all beautifully numb.

I do have to say that, despite virtually no real pain resulting from this surgery, there were a few things worth mentioning. 1. Blowing your nose, will hurt. 2. Coughing will feel like a thousand microscopic BOMBS going off in your chest. 3. In the moments before sneezing you may consider whether or not it would be easier to just shoot yourself in the face before the sneeze actually happens... SNEEZES WERE THE WORST. None of these things were a problem about 2.5 weeks after surgery.

During surgery they had inserted an anesthetic delivery system directly into the incision. It was called Symbios, and it pumped a steady stream of wonderful into my side for a whole three days after the surgery. I stayed in the hospital over night after the surgery, every one was so nice. I had about 70% ROM after about 5 hours after surgery. By the time I was released the next day, I had pretty much 100% ROM.

They prescribed me some Percocet, and I had like 3/4 a bottle of Vicodin left from when my arm had first started acting up. Fortunately though, the Symbios kept me pain free over the next three days. At the end of the third day, in apprehension of some overwhelming pain to befall me once the Symbios had been used up, I took half my dosage of Percocet. Six hours later, I woke up so high I didn't know where I was. I spent the rest of the day tripping in my bed. When I finally came to my senses and the drugs had worn off, there was no actual pain to speak of. So I tossed the Percocet.

With no real pain, I didn't really need the drugs. I had been well enough to go out to the mall and hang out with family a day after surgery, but I think emotionally I was a bit worn out. I first five days after surgery taking it easy. Then I started getting back to hanging out with friends. On a day where I expecting to be out and about, I'd take a precautionary Vicodin (didn't want to be 30 miles away from home and realize I should have taken one). After about 2 weeks after surgery, the precautionary Vicodin wasn't even necessary.

I had been working again since 1.5 weeks after surgery. 3 weeks after surgery, I had been given the go ahead to start working out again, and I was back to my normal routines.

Working out again was scary at first. It was hard to know how to approach the arm. How much pain was too much? How much activity would be pushing it too far? But, you figure it out. Right now, I'm just under 4 weeks post OP, and I'm doing push ups and pull ups and whatever else I feel like doing. The only real limitation is how out of shape I've gotten. I'm probably 8 pounds heavier than I was at this point last year, but I plan to take care of that in a month or so.

On a side note, after beginning to work out again, I noticed that a certain muscle on my right side wasn't flexing (as in, when I go to use it, nothing happens). It's called the serratus anterior, I expect there may have been some nerve damage resulting from the surgery.. to be expected. Nerves heal, so I'm being patient with it at the moment. There was some numbness in my inner arm and of course near the incision after the surgery. The sensation in my inner arm FELT more like hyper sensitivity, it would just feel like my t shirts were rubbing the skin raw. That has definitely subsided at this point; the incision area is still fairly numb, but that doesn't bother me at all.

Sorry about how long winded that ended up becoming. I just wanted to be thorough. I had been reading this forum a few months previous to my surgery and it really helped me to understand what I should expect from this kind of procedure. I'd like to thank each and every person who has shared their story here. It meant a lot to me.

Best wishes,
Len

'It is what it is'.......... LOVE IT!!!!!!!!!!!!!!! I say this all the time to myself and those concerned for me to try and remain relaxed about my whole TOS stuff. Ha ha Thanks for making me smile to myself, it all helps.
from SD38

Hi BexUk
Thanks for the scarring update. I'm currently 3 weeks post first rib excision with 2and1/2" scars above and below collarbone. At the mo they are still raised but redness is going down nicely and so is the initial swelling from the op. I just hope they flatten down, it looks abit Frankenstein esk.
Glad you are well and best wishes to ALL out there.TOS will not get the better of us!!!!!!!!!!!!!
From SD38

Interesting stories about your respective surgeries thanks for sharing. Definitely a contrast from the statistics which is encouraging. Seems like the majority of the surgeries were warranted by blood flow and not so much neuro symptoms. Wondering if that is indicative of the good results. What sort of prognosis are you getting for potential failures. Doing pull ups and pushups is encouraging but how can you avoid scar tissue and other recurrence. My fear would be making my situation worse or undoing the surgery. If the surgery were to "fail" how soon would you know? What is the follow up work up to track complicstions or relapse ??

Hi 343v343,
I'm day 27 post first rib excision op now. Yes the surgery was predominately due to Venous occlusive disease as my previous neurological issues that accompanied it subsided on there own accord... after a year with the help of minimal use however.
At the moment I'm still coping with slight inflammation, muscle tightness/aches so can't really say how the turn out will be. I've had afew episodes where I feel like I've done too much moving around and felt as though I've pulled and taxed my muscles. I have a little hard lump at the base of my neck/just above my collarbone, at the edge of one of my scars - which feels achy/pulsey???.... so abit concerned about that.
Currently I'm just stretching to help with the muscle tightness of my SCM.
My follow up with my surgeon is in 3 weeks time so I am waiting until then before I undertake anything too exertive. I'm scared that if I return to normal activities ( not that I'm near to that stage yet) I will undo the surgery or cause damage around my scar tissue.
Anyway after my surgery follow up I will give an update.
SD38