post Thoracic Outlet Syndrome decompression surgery.

Posted , 17 users are following.

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. sad

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

0 likes, 44 replies

Report / Delete

44 Replies

Next
  • Posted

    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

    Report / Delete Reply
  • Posted

    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!

    Report / Delete Reply
  • Posted

    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.

     

    Report / Delete Reply
  • Posted

    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!
    Report / Delete Reply
  • Posted

    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.

    Report / Delete Reply
  • Posted

    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.

    Report / Delete Reply
    • Posted

      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?
      Report / Delete Reply
    • Posted

      I just had my 2nd one done 3.5 weeks ago. Pain free? Probably a coupl to three months. Totally free in 6 months. The site where the rib is removed still swells and is sore even now. Night times are still awful because you just can't get comfortable. It's rougher than I anticipated!

      Report / Delete Reply
  • Posted

    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!

    Report / Delete Reply
  • Posted

    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.

    Report / Delete Reply
    • Posted

      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.
      Report / Delete Reply
    • Posted

      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 Monicasmile

      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!

      Report / Delete Reply
    • Posted

      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.  
      Report / Delete Reply
    • Posted

      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. 

      Report / Delete Reply
    • Posted

      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. 
      Report / Delete Reply
    • Posted

      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

      Report / Delete Reply
    • Posted

      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

      Report / Delete Reply
    • Posted

      This is interesting.  I had a nearly fatal car crash in 2004.  My injuries were mainly broken bones but when I awoke from the coma they put me in I quickly realized that I could not move my left arm at all and I could only move my right fingers.  My right arm healed pretty quickly and I regained function within a few weeks.  It was a different story on the left,  It took over 2 years of physical therapy to regain full fuction.  I now realize after 12 years the symptoms that I was having were nerve pain.  I thought it was just because my elbow was broke and the significant injury to my left arm.  I have become fully functional but for some reason in January of this year I starting having significant pain in my middle finger that slowly got worse and started moving up my arm.  I have seen several doctors and read alot about TOS.  My physical therapist agrees with me that what i have is most certainly TOS.  The location of the pain and the symptoms match to a T. The burning pain is in the front and back of my shoulder, under my colar bone. The nerve pain is controlled with Gabipentin most of the time but I keep having to increase my dosage to keep up with it.  I pray to find a doctor that cares enough to help me and not just medicate me.  I am in the USA so chances of that is slim. 
      Report / Delete Reply
    • Posted

      Flip you been unlucky! They say that TOS can be caused by accident. Have you had nerve tests done??? I am in UK. Don't rush in till you get all the facts and tests done.

      Report / Delete Reply
    • Posted

      Yes I have a EMG study done with normal results,  I also have had a cervical MRI and a MRI of my brachiel plexus done with normal results as well.  They did see arthritus in my neck but nothing that would account for my symptoms.  We also did another nerve test (Somatosensory evoked potentials (SEP)) and those results were also normal.  No test results so far have substantiated the pain that I am having. I really think that I have scar tissue that has enveloped my brachial plexus and that is what is causing all of these symptoms. I just wish there would be a diagnosis so I can figure out if it is even treatable. 
      Report / Delete Reply
    • Posted

      Well in 6 months after the surgery you are glad you did it. But it's a really long recovery. I said to my husband this time, it was so hard because I knew what to expect this time. And I am a 42 year old fit and healthy woman. It's hard to go in feeling ok and leave knowing that the pain is going to be rotten for a few months. That part is hard. But my first side had no pulse whatsoever and after the surgery I had a strong pluse and a whole lot less pain eventually. This time my pulse was gone when my arm was up and now it's strong. You have to decide whether there is harm to the arteries at this point. I had a risk of stroke or hardening of the artery later on. So it had to be done. It's just a very long road of recovery. But it's more manageable. I'm hurting but haven't taken a pain med yet today. By tonight I will have to. That I will be happy to see go. But it's how it will affect those arteries later on. My other alternative was if the artery hardened eventually its a 10 hour artery replacement from your leg. And I didn't want that.

      Report / Delete Reply
    • Posted

      Hi Wendy, Could you tell me where you are in the UK or if you know anywhere I can find a consultant with an expertise in TOS please? I'm in the NE and my physio has diagnosed me with TOS. At the moment I am in constant pain and am losing the dexterity in my thumb. I also have reddening of my face and the sides of my neck -was sent to a dermatologist but she said it wasn't skin related but may be vascular...I know it's vascular as it worsens positionally - just like the neck/throat/shoulder pain. I'm not over confident in the NHS following an accident years ago and have various drug allergies (nerve block carrier among them 😔wink so drug treatments are often unavailable to me...the lack of function is driving me nuts and physio is only aggravating my symptoms. 

      Report / Delete Reply
    • Posted

      Oops sorry I didn't mean to put in a winky face...it's all gone a bit 'Pete Tong' 🙄 Thanks in advance for any time...how are you doing now?

      Report / Delete Reply
    • Posted

      I have now had a steroid injection in c6 to eliminate the possibility that the pain was coming from my neck (the injection did not relieve any pain) and 3 weeks ago i had botox injections in my scalene muscles. So far i can not say I have had any pain relief. I truly do not know what to do. I have had 2 doctors give up on me and say they cant figure it out and shove me off on another doctor. I am now with a pain management doctor. I need to see someone that specializes in TOS but the only doctorI can find is in Saint Louis and isnt accepting any new patients. Any suggestions would be great.
      Report / Delete Reply
    • Posted

      So sorry to hear you are still in pain. I'm in the dark myself, and I am in the UK, I've seen more specialists than I can count over the years and it's only now that the physio I see has diagnosed me with TOS (I also have an existing neck issue...allergic to the local anaesthetic carrier for steroid injections...found this out when they gave me one and I had an anaphylactic shock!). I do hope someone can point you in the right direction Melissa. It's not much but my thoughts are with you. 

      Report / Delete Reply
    • Posted

      Hi again, I was just looking at the recommended site above, Mr Rob Patterson at the Cherington Practice in the UK. There is a testimonial from: Dr Hugh Gelabert, MD

      Professor of Surgery, University of California, Los Angeles School of Medicine I know it's a long shot, and you may not be anywhere near there, but it may be worth contacting him to see if he knows anyone near to you who specialises...failing that give Mr Patterson a ring as it looks like he has a lot of international connections. Good luck! Keep us up to date with developments. 

      Report / Delete Reply
    • Posted

      Well I had steroid injection also. But it gave me palpations did nothinges for my pain. I give up now with doctors and consultons. Just got to find away of managing the pain. Good luck
      Report / Delete Reply
    • Posted

      I am managing with Gabipentin but I am taking so many to be functional. I am at the max dosage now and it is really just dulling the pain.  I have good moments but they are short lived. I hate that the only thing the doctors can seem to do is medicate me more.  I think my next stop will be to a more wholelistic doctor.  There has to be a better way to manage this pain.  I will beat this. 

      Melissa in Kansas City, MO USA

      Report / Delete Reply
    • Posted

      I've been avoiding GP and Pregablin for years now...took Amytriptiline for a few weeks and blew up like a balloon. I have so many drug sensitivities...esp to painkillers and anaesthetics that I try everything else before drugs. It's cost me a fortune but the some of therapies I have had really have helped...unfortunately it's getting worse and now small things set the pain off. Things that have helped: Cranio Sacral therapy (delivered by a physiotherapist not anyone else), Shiatsu, the Alexander Technique and relaxation/meditation techniques. 

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up