post Thoracic Outlet Syndrome decompression surgery.

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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

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  • Posted

    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.

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  • Posted

    Hi Everyone,

    I was diagonsed with Thoracic Outlet Syndrome 30 years ago when the doctors found that I had bilateral cervical ribs and that my transverse process bones on both sides were three times longer than they were supposed to be. I lived with this pain on both sides off and on for 30 years. I had physiotherapy, nerve blocks, injections, medications and more.  My local doctors also told me not to have any surgery back then because the surgery caused scar tissue which would cause the same symptoms as the bones which were being removed.  Fast forward 30 years and there is now a Thoracic Outlet Syndrome Center at Mass General Hospital in Boston, MA USA. (I live in USA) My original doctor, the one that said don't have the surgery, finally referred me to this doctor in Boston.

    I went to Boston and had 3D imaging studies and they found that I had to have the cervical rib removal and transverse process reduction surgery on the left because my subclavian artery was being 90% blocked by the rib.  I am now 5 months post surgery.  I had a great deal of scar tissue covering my scalene muscles, the cervical rib and my brachial plexus nerves. It took four hours for my doc to peel the scar tissue away from my brachial plexus.  Needless to say my nerves were not very happy.  I was told that it would take 18 months for the nerves to fully heal. The good thing was that I didn't have to have my first rib removed as they had planned on. My surgeon said that after he cleaned up all of the scar tissue there was plenty of room in there for recovery.  I couldn't take gabapentin because I had a really bad reaction to it so I take topamax (topirimate)2x/day, and cymbalta (duloxetine), as well as pain meds. I was progressing until about 3 months post op and then started to develop chest pain. In the beginning it wasn't bad and I thought it was part of the recovery, but it got worse.

    Now at 5 months post op I am having another procedure that will help my recovery.  It is only day surgery for a pectoral minor tendon release.  About a month ago I started to have intense spasming of my pectoral muscles in my chest which is causing my scapula to wing in the back, and also causing rounding of my shoulders. So every time I put my shoulders back and stand or sit straight, my pectoral in the front spasms. If I sit in a high-back chair or roll onto my back in bed, both of which push my scapula into my back, my whole arm starts to go numb and I get the symptoms in my hand that I got before surgery.  Since my surgery my index and middle fingers have been numb on the inside. This is going to sound weird, but they are numb on the inside and super sensitive on the outside, and always cold. Anyway this surgery is going to release my pectoral muscle tendon so it won't pull every time I straighten my shoulders. My doctors have told me that 40% of the patients with TOS have to have this surgery as well as the surgery at the scalenes or above the collarbone.  Some people with TOS only need this tendon release surgery if they only have pain below the collarbone. 

    I hope this information has been helpful to someone out there.  I am not looking forward to this next procedure.  If there is anyone out there that has had this procedure I would really like some input.  I know that the surgeon is going in through my armpit this time, so I'm not looking forward to the uncomfortable first couple of weeks of recovery. I do also know that if I got through the last surgery I can get through anything because that was really rough. My surgeon also said that on a level of 1 - 10 my first surgery was a 10 and this one is going to be a 1.

     

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    • Posted

      Hospitalized 2 times in April for blood clots. I hope this rib removal surgery will free up space so I don't get clots anymore. Still pretty stiff but it's better than yesterday .

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  • Posted

    Hi Linda,

    I'm 7 weeks out of surgery. I had my right first rib removed. I had something going on where my right peck had deflated and I was loosing muscle build on my right bicep. Found out my rib was restricting blood flow so it had to be removed. Well after this surgery I found out I  have Brachial Plexopathy, this from the surgery . meaning I can't extend my fingers in my right hand because the surgery caused swelling so they are trying to tell me  in the upper part of my neck.. I hate to say it but I feel worse than before. I have to go to outpatient hand therapy. I was told that the only therapy would be in my shoulder.  1mm a day is my nerve growth and its been 7 weeks. Trying to stay positive but when I researched this Brachial plexus I found out its an injury from an accident or some sport. I got mine from surgery, so now I feel like the doctor caused this. I don't know if anyone else has this injury after TOS surgery.If you don't have this then you should recover well. I recovered normally for what I was told before I had the surgery. The hand problem is my headache now, 8 weeks ago I was fishing, lol. Hope that you get better.

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    • Posted

      Hi Leroy,

      My husband had tos surgery back in May 2017, the doctor did the surgery laparoscopically, huge mistakes… never let a doctor preform this surgery laparoscopically. During the procedure his phrenic nerve was damaged (the same thing that happen to Linda in the original post) that is why her diagram was not working. Today we are 96 days out from surgery, the pain is horrible my husband has lost use of the arm that was operated on. He still has tos on the left side and cannot have surgery due to the phrenic nerve damage because his lungs will not handle going under sedation in their current condition. My husband is in more pain now then he was before surgery. I hope your nerve pain heals quickly and your life is not permanently in pain.

      Demand answers from the doctor, did he see the nerve during surgery? Did he hit it? Cut it? Burn It? During surgery. 

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  • Posted

    Hi Linda,

    Did your diagram heal? Are you out of pain? Are you healed now?

     

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