Hi. I'm 2 weeks post op. It took me 3 years to get the diagnosis from an amazing Plastic Surgeon in Salisbury Hospital. UK.
After 2 years of physio, scans, xrays and appointments with pretty much every specialist in Dorset I finally was told I could have the op.
I was advised that recovery was hard and painful but I would feel immediate relieve from the original symptoms.
Well, I certainly don't have the original symptoms anymore but they have been replaced with a whole new batch of issues and pain. 
My op took 4.5hrs. They shaved my first rib, and said that it was alot worse than expected. The nerves were attached to my muscles and had to be physically torn from them! ! but I was then in the recovery room for over 8hrs due to having a very high heart rate 180 for 8hrs !!! After 50ml of morphine, fluid and god knows what other drugs, I was taken to the ward. I spent 6 days in hospital. The first day after the op I became short of breath with pain, after an xray it was discovered that the op had temporarly paralysed my diaphragm nerve which meant I couldn't take a deep breath in. This is easing now (2 weeks after).
I am home now but the pain in my shoulder and my back is so bad. I have one spot on my shoulder/back where it feels like someone is pushing a hot knife into me.
The muscles spasms all the time and I can't lift my arm at all, not even enough to shave my armpit! !
The worst thing is having a numb hand/finger tips. I'm just starting to hold things, having learnt how to with a numb hand!
Can anyone tell me how long this pain and numbness will go on for? .
This is bringing me down so bad. Sleeping is a nightmare without morphine , which I'm trying to come off but can't due to the pain at the mo.
Any advice or similar experiences would be greatly appreciated xx
Hi Linda. I am 4 weeks tomorrow post op. Had my left one taken out and muscle tissue. I am not taking any pain killers. still have some numbness in the end of my fingers, but not all the swelling internal not gone yet, so hoping when that does, my fingers will be ok. I had the shoulder pain in the first 3 weeks, and could not lift arm to far. but now great. did my first house work yesterday !!! did to much really. I now waiting to see my vascular surgeon on 17th july. it took me just over 2 1/2 years to find the right consultant. And then hopefully he will do my other side.
good luck with your recovery
Everyone is really different with regards to recovery. But your symptoms sound very normal.
Everything will be inflamed inside & they hold your arm in traction for the duration of the surgery which can cause pain in itself.
Are you still taking pain relief? It is important so you can start doing small movements. Do t try and come off it too soon, an anti inflammatory might be beneficial too. Have you been advised on any physio exercises to do post op?
I really struggled for quite q while after my second op, but it did gradually get better. It's a major surgery and it can take some time to recover from.
Take it easy & keep on top of pain relief is the main advice I have!
I am 7 weeks post op. The surgery was 5 hours and they took my rib out because it was causing trouble with the nerves wrapped around it as well as muscle tissue too. The pain was awful. Horrible actually since they punctured my lung too. I ended up with pneumonia and then bronchitis with that problem. The nerve pain was insane for about 5 weeks. The surgeon said it was because they manipulated them and cleaned them up so they had to heal. They would fire for hours at night. Like lightning bolts. But after seven weeks I am much better. Starting to get my energy back. Little twinges of pain but nothing major. It will get easier. Still very numb across my chest. Must be more nerve trauma. But it will get better.
And yes...the pain was outrageous in the one spot around the shoulder blade. It hurt to lean back, or try to get comfortable. I found sleeping on a lazy boy chair propped up with pillows helped a lot. But that will go away after a while. I was almost depressed at nights because the pain was o horrible, but thank god it went away. I still have to have the other side done....dear god I don't know how! It was the longest five weeks of my life!
Yes I had some complications too, your surgery sounds quite intense especially with all that happened after. It sounds like you need the pain relief at the moment so I wouldn't plan on reducing it until youbare much more comfortable & if you are still very uncomfortable with the pain relief consider adding something else in.
As for the second side, hopefully it won't be in such a bad state inside is all you can hope for and leave a good amount of time so you are recovered from this op as the 2nd op will put strain on this one too.
Take care.
Hi everyone, I was diagnosed with Thoracic Outlet Syndrome a couple of weeks ago so I thought I would share my experience since I was looking for other's experiences once I learned I had this. I am a 35 year old healthy and fit police officer. I worked out on a regular basis and actually increased my workouts (mostly running and push-ups) prior to this. On a Saturday afternoon I had a sudden onset of symptoms to include pain, swelling, and discoloration in my right arm. I went to the ER where the physician immediately recognized this was a blood clot. They did an ultrasound to confirm his suspicions and admitted me into the hospital. What we did not know was the cause of the blood clot. The following morning the vascular team performed a procedure where they removed the clot. I was told it was a large clot in my upper arm dangerously close to my neck. Once they cleared the clot I thought I was in the clear. The thoracic surgeon informed me that I had something called thoracic outlet syndrome (veinous). The physician explained what TOS was and speculated it occurred due to recent workouts where muscle was built between my first rib and clavicle. He initially indicated he could do the rib resection stating he has done a few in his career. We were also told we had time (up to three months) to have this surgery done. I began to realize this was not a common and simple procedure. Within 24 to 36 hours I had the same symptoms in the same arm and returned to the hospital. They conducted another procedure to remove the clot and told me I now needed TOS surgery done sooner than later.
Decision where to have surgery
There are several risks and possible complications which can occur. After a day of trying to decide when and where to have the surgery, we got in contact with Dr. Ying Wei Lum at Johns Hopkins Hospital. Dr. Lum is an experienced thoracic surgeon who has a special interest in TOS. After doing more research, and learning that Dr. Lum does this surgery on a regular basis for people all around the world to include professional athletes, I along with my family decided it would be best to travel to Johns Hopkins and see Dr. Lum. I met with Dr. Lum on a Wednesday where he went over my tests which had already been done as well as an additional Ultrasound I had at his office. Dr. Lum explained the pros and cons of having the surgery. Since I was young and need full use of my arm, he recommended the surgery and physical therapy to follow. I cannot begin to explain the anxiety I had. I was worried about so many things to include a pulmonary embolism, other surgical complications, and of course the thought of not having full use of my right arm down the road. Deep down I knew I made the best decision no matter what and had to suck it up and give it the best shot.
Surgery experience and recovery
I arrived at the hospital the following Friday morning to check in for surgery. The staff at Hopkins were professional and comforting. They put me in pre op where they did their thing like starting an IV and had me sign last minute waivers. My family was allowed back to wish me luck prior to surgery. They took me into an operating room where the last thing I remember was taking 4 deep breaths into an oxygen mask. Next thing I knew I woke up in a groggy state of mind in the recovery room. I remember the first thing I asked is if everything went ok. They assured me everything was ok and there were no complications. The surgery lasted approximately two hours. I remember feeling some pain but I was still sedated and zoned out so it was pretty manageable. We waited in recovery for a few hours until they transferred me into my own hospital room for a night. Once they got me settled into my own room, I began feeling the pain get worse. Mostly in my upper arm, shoulder and chest area. It made sense because the nerve blocker they injected me with prior to surgery was wearing off as well as some of the pain meds. I was hooked up to a machine which would release medicine into my iv every time I hit the button (once every 15 minutes was the limit). The first night was pretty rough but the staff did a good job of helping me manage my pain. I got very little sleep that night and the doctor came in the next morning to remove my drain and examine my incision. All seemed well so they released me from the hospital. Off to the hotel we went where I was to recover for 3 more LONG days before I was allowed to fly home. The ride back to the hotel was very painful as I felt every crack, bump, and stop in the road. As soon as I got in, my wife got me settled into bed and I took my pain and nausea meds. I was in bed for a solid day and a half. I propped some pillows up and had to lay on my back with my arm propped up on another pillow next to me. I slept on and off but never got more than an hour two of sleep at a time the first couple of days. The best advice I can give is to make sure to take your pain meds on time as directed. I made the mistake of trying to spread it out longer than directed and it didn't go so well. Do not try and tough it out for the first 3 days. Now I am on day 4 and blogging from an airplane as I fly back to Georgia. I was able to get out yesterday and walk around but was tired and sore by late afternoon. Here on day 4 I am still very sore but I am managing the pain. I was not sure what to expect as it seems like everyone had different experiences. I am starting to spread out the time of my pain meds and taking the minimum dose. The goal is to be off of them by Thursday or Friday which will be one week since surgery. Sitting here on day 4 the best way to describe the way I feel is sore and more tired than usual. I also have been having a low grade fever which has concerned me but the doctor told me not to worry about it for now but to keep an eye on it. I am anxious to get back to work and begin physical therapy. We will see how it goes but my goal right now is to return to work (light duty) next Tuesday which will be 11 days post op. This is assuming there are not any complications and that I am off the pain medication. I hope this gives some of you some insight on what I went through during my TOS experience.
Hi Linda
My 27 year old daughter is 6 weeks post op. She had the excruciating pain in her chest that also felt like a knife stabbing her. This pain thankfully subsided I think about week five. we did make the mistake of having her go off of her good pain meds her first week home because she was throwing up so much in the hospital. Thankfully her family doctor put her back on them as well as adavan to help her sleep. she was able to stop all pain meds at week five once that horrible pain stopped.
Don't rush being of the meds. I know it helped my daughter to be able to cope at least. And sleep which is so needed during recovery.
I wish you all the best in your recovery and hope that stabbing pain goes. Blessings to you!
I am one week tomorrow past operation. My 2nd side so I'm a pro now. Crazy nerve pain now and yes...the knife in back feeling takes a good month. It's a really long to getting better. I had a collapsed lung last time and this time fluid under my lung. So follow up on that this week. It's a good 6 months to be honest where you start to notice no pain and tightning. I dressed this one because of the first one. But now it's done and just have to heal up now.
I am curious to learn how you are doing after the surgery now that it has, been some time. I am in the process of trying to get a diagnosis. I am trying to learn more about how this surgery really helps. I certainly do not want to be worse off than i am now. Any info would be fantastic.
Hi Melissa
This is Kathy, as I was the one who was writing during Monicas time if recovery, this email is read by me and not Monica
I can tell you that she is doing well! Her scar is healing amazingly and situated nicely in the curve of her collar bone.
She does still see an osteopath I think every second week or so.
She does not complain very often but I do know when she is at our home visiting she does sometimes complain of shoulder and neck achiness but normally when we are sitting at the kitchen table which has high wooden chairs.
I will forward your questions on to her and perhaps she can respond with more detail.
It definitely was a huge recovery, one that neither of us knew would be what it was!
Take care!
Can I ask how you are feeling now?
Do you feel the surgery was worth the pain?
Thank you Kathy. I am trying to evaluate what doctors I need to see to get this taken care of ASAP. I do not want to be one of the patients that has to wait 2 years to get this taken care of. The pain is relentless and I am certainly over it.
Hi I was hospitalized 2 times with blood clots in April and having thoracic outlet decompression surgery on Tuesday. How long did it take for you to be pain free and then resume normal activities?
I can sympathise with you. The thing no one tells one before the operation is that you are changing one lot of discomfort for another for a while however the discomfort you are feeling now should improve. Are you having any other medication aside from morphine - like Gabapentin or Amitrpyline?
Are you have any post op Physio therapy?
May I suggest you contact Mr Rob Patterson at the Cherington practice in Bristol - look him up & you will see his special interest & expertise lies in TOS. He's brilliant in every way.
The operation is only part of the recovery. The nerves need support while they are regenerating. That's why the muscles go into spasm as the nerves are firing up.
Try sleeping flat on your back without any pillows.
I am almost four weeks past surgery. It's still tough. Evening and nighttime pain is still quite intense. I still have to take pain meds at this time. More pain down the arm and in my chest under the incision really hurts then. Like stabbing pain and sharp pain. I have noticed that touching anything cold with that hand hurts a lot. It's very frustrating because you can't get really comfortable at night to sleep. And I'm due back at work next week. Not sure how that's going to go because I type all day. It's a really long recovery and that's the hard part. I remember the last time really noticing the improvement after about 3 months and really a lot better after six months. So it's hard. I wish the process would hurry up.
I am not sure the pain I am having is worth the pain it will be to fix it. I am now understanding the seriousness of the operation and it is making me nervous. If I can controll the pain with Gabipentin I think I might not pursue the operation. I hope you are able to return to work. Positive thoughts coming your way.
Hi Melissa. I know must be scary reading from different people. Any op comes with complications. Some have total recovery. But there is a few that make it worse. Which I am one of them. But I would not of known until I had the op. Only you can make that decision. But make sure you have surgeon and ask plenty of questions that you are worried about. Good luck.
Wendu
Thank you Wendy. Best of luck in your recovery.
One more question. What were your symptoms before the surgery? and, how severe were they?
Hi Melissa. First it took nearly 8 years to say I had TOS then another year to find right consultant. Vascular surgeon. My pains were pins and needles in both hands and down my arms. And felt like something tight around my arms and heavy on my chest. And burging paid around during top half. No drugs helped me.
But some people have TOS and have no symptoms.
Hope this helps. Please feel free to ask any questions. My op was done from the front both sidesign. The scars are nothing. And must say op was painless in a funny sort of way. But all my symptoms came back within a week.
Wendy