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TOS Cervical Rib Removal and First Rib removal

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I (have) had Thoracic outlet syndrome. It took approx 8 years to figure out what I had. Finally found a doctor I could agree with. He found cervical ribs both right and left. Only had symptoms on my right side. Pretty sure symptoms were brought on by a car accident (whiplash). Anyway.. Had the cervical rib removed and the first rib removed along with the skaleen muscle that was in a spasm. It has been 5 weeks and I am still taking pain meds, although I am finally starting to feel some relief. Not ready to quit the pain meds though. Although I'm gonna have to since my dr wants me off them. Wish he could feel this pain.My chest is numb but it is painful underneath. It burns like heck and the muscles, or it may be the facia that runs from my neck to my chest that is so tight it kills me. I try to do my stretches but it hurts. Mornings are awful. Be prepared to not sleep at first. I am thankful to have found this site. You feel like you are the only one out there who has been through this since it is such a rare anomaly. If you are going to have this surgery perpare yourself for not only the pain but the mental challenge of being in pain for so long. You will have some really down days. Good luck

1 like, 198 replies

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  • cobwebs925
    cobwebs925

    Posted

    Hi

    You are 3 weeks ahead of me, my op was 2 weeks ago. My main concern is that the surgeon said I would be able to go back to work sfter 2 weeks and thats like today but there is really no way I can spend all day ar a desk yet. I told my boss maybe 6 weeks as thats when I go back to the specialist, my GP isnt sure at all how long it will take but he did laugh out loud when I said 2 weeks! I'm still numb, no actual improvement yet on the original symptoms but now I have a whole load more. I did think tghe surgeon was being a bit optimistic in his handiwork. Like you I;ve had the cervical rib, 1st rib, some muscle and a part of the clavicle removed. Its a neat scar though, maybe if the scar looked worse I'd expect to feel like I do but as its all starting to look better on the outside maybe I'm just expecting too much too soon. Please keep updating on your progress, its good to get info from someone who has been through the same experience and I hope you start to improve soon. Take care

  • Jopo
    Jopo

    Posted

    I'm probably 12 weeks on, I'm still needing tramadol some days. His estimate of 4 weeks ws a bit of a laugh.

    Although I did have complications from the surgery...

    It is really hard, and can be very draining being in so much pain. No one really understands.

    Take care

    • PUNEET2030
      PUNEET2030 Jopo

      Posted

      what were your problems please tell me..............
  • Avi
    Avi

    Posted

    Sorry to say that I am 4 years on and still take tramadol or codeine to help me especially at night or when I have to drive for a long periods.

    My doctor (a navy nerve specialist) told me that it can take up to 10 years to recover properly from this type surgery and be pain free, so I’m afraid it's a long road ahead everyone.

    I too have had the 1st ribs etc out on both sides, and spent just over a week in hospital on a morphine drip after both surgery’s recovering.

    Good luck everyone it’s a long recovery which I am now hoping I don’t have to make again as they think it's grown back !!

  • .........
    .........

    Posted

    Hiya,

    I have a cervical rib on my left side and have been suffering from the symptoms of TOS. I have been told i have to have an operation early 2013. I'm quite worried to be honest and just wanted to know a bit more about the procedure and how it will affect me i guess??? If anyone could help i'd really appreciate it.

    Thanks

  • Avi
    Avi

    Posted

    Hiya, as i mention above its quite a long road for recovery. The operation it self can vary depending on how bad the extra rib is. Ive had the surgery twice, one on each side and they both took 5 to 5 and half hours and i was in hospital for a week after for both. I was told mine was quite bad so that's why it took so long to do. The average time is usually an hour or so and 1 or 2 nights in hospital so they say, but speak to your surgen to get a better picture as to what you will happen for you. I guess it also depends on country to country as there are various ways to operate. (I had mine through the side of my armpit and not my front checst for example)

    After the surgery can vary depending on each person too, for example had the surgery 4 and half years ago and my the tops of my arms are still numb as they cut the nerve running down my arm. I can feel from my elbow down now so it is getting better. It doesnt really effect my day to day life or anything it's just a pain if you have raise your arms above your head as they go numb in seconds lol !

    Good luck with everything, and im sure you'll be fine !

    • PUNEET2030
      PUNEET2030

      Posted

      please tell me what  your symptoms(pains) were.please......................
  • .........
    .........

    Posted

    Hi,

    Thanks for the help and advice. It does seem that everyone has different experiences with it all regarding the severity and ,well, the surgeon as well i guess! I been told i should only have to spent 1 night in hospital and then it should take around 6-8 weeks for it to feel normal. I was just concerned as the recovery time seemed to vary between so many different people who have had the operation but as you say i'm sure it all depends on the severity etc.

    Thank you for your kind help and i hope you carry on recovering well. smile

  • adi2
    adi2

    Posted

    Hi all im due to have an cervical rib removed next month ..at jimmys hospital in leeds heard a few different storys about treatment and recovery times etc... so im gonna keep everyone informed before and after the op is done
  • louis52558
    louis52558

    Posted

    Hi,

    I recently had a cervicle rib removed on the right side after it was found I had them on both sides, but only had symptoms of the right! Before the operation I read through all these forums which freaked me out slightly with all the stories about how much pain patients were in and how they were still recovering after months, however I'm here for some reassurance. I was being operated on for 5 and half hours as they had to cut the rib out in sections and it was too big to remove in one, however the operation was completely successful. Recovery wise I woke up on a strong local anaesthetic so couldn't feel anything on the whole of the right side of my upper body, so obviously wasn't in any pain. After a few hours as the anaesthetic wore off and pain started to build I was given morphine and other drugs to manage the pain, but it never got unbearable. The first night was the worst with my blood pressure dropping worryingly low, but the pain was completely manageable. I improved really quickly and was out of hospital after 3 days, with pain only when moving the neck. After one week I was only on paracetamol, and was back at school within 3 weeks of rest and recovery. However I was unable to do sport for a few months

    So don't worry about the operation too much, I know I was lucky, but from my experience a few days of pain with strong pain killers is well worth it to reduce the symptoms

    • kimberly40375
      kimberly40375 louis52558

      Posted

      Thank you for sharing your experience. I am meeting with a cardiovascular surgeon on the 18th to schedule the surgery. I have Arterial TOS. I was born with it. I have had symptoms all my life, but didn't realize it was all due to this. I have the extra ribs on both sides, however, the issue is only on the left side. My artery is compressed, so the extra rib has to come out. I am nerveous abou the surgery, however, it is nice to see that there is someone that didn't have a bad experience and had a descent recovery. Thank you for sharing.
    • suzanne44496
      suzanne44496 louis52558

      Posted

      So glad I've found your post, I'm due for surgery and am soo frightened after reading some posts on here.
    • wendy176
      wendy176 suzanne44496

      Posted

      Hi Suzanne44496. I had my first op 17th july 2015. all was great. no pain killers after two weeks. scar fading really good. and had my other side done 20th august 2015. all went well. been severn weeks since second op. no pain killers but slight pain in my shoulder and above the scar. went last week to see my consultant, and he said this is not uncommon. and was pleased with my recovery. and back to work today. I had on both sides done and the scar is about three inches above my collar bone. I am glad I found the right consultant and had it done, took two years to get this far. Do not worry about the op. I am in the uk. Good luck, keep me posted or if you need to ask anything about op.
    • suzanne44496
      suzanne44496 wendy176

      Posted

      Thank you so much for your reply, makes me feel a lot better regarding the opp! I'm living in the UK near Swansea, where did you have your opp? Had my preassesment last week, which put me off, I was told that I would have to sit up for 2 days after the opp and use a bed pan! Was this the case for you.

       

    • wendy176
      wendy176 suzanne44496

      Posted

      Shropshire. Well I can only say what happenered to me. Was out of bed with in three hours. did have tub in to drain blood of which is standard, that stayed in until next day, then went home within 24 hours. when home you are best to lie on your back to sleep for the first week. are they doing your op like mine above the collar bone or under arm pit ?
    • suzanne44496
      suzanne44496 wendy176

      Posted

      Hi, above my collar bone. The did say in the beginning they were going under the arm pit, and there would be an opp on my hand also,but then was told no opp on hand but bigger opp on neck, haven't asked why! Too frightened x
    • wendy176
      wendy176 suzanne44496

      Posted

      above the collar bone better. think they might of been doing carpal tunnel on hands ??? because it gives the symptoms of trapped nerves. had that done first !! lol.don.t be frightened to ask them questions it.s your body. always ask before they do anything. x
    • suzanne44496
      suzanne44496 wendy176

      Posted

      Had an electric /nerve test on my hand and arm, the man who did it was very interested in me, saying good news!  no opp on hand but bigger opp on neck , I then got told that they would be removing the rib through my neck not under my armpit,x
    • wendy176
      wendy176 suzanne44496

      Posted

      Yep had that and they found nerves trapped in elbow, and they said i would have to have them released ? told them no. until I have had my cerival ribs taken out. and go from there. touch wood my fingers aare fine since op and arms. Let me know how you get on.  GOOD LUCK x
    • sharis
      sharis suzanne44496

      Posted

      Hello.  I had Neurogenic TOS due to 2 cervical ribs and living with symptoms all of my life but much more prominent and continually getting worse after turning 40.  Last year in September at 46yrs old I had surgery on both sides.  They removed right on a Tuesday and then Thursday removed the left and because they did both in the same week, I was in hospital for a total of 10 days.  My goal was to recover from both at the same time and have 8 weeks off work once instead of twice.  I can honestly say that I am thankful that I did that.  The surgery went well, the recovery went well, and the scares are almost invisible even though they are 4 inch long just above collar bone.  There was no pain after waking up as I was on meds however when they wore off I did need morphine and deladid while still in the hospital and I suggest NOT letting the doses wear off before getting more.  I say that because one of the nurses skipped a dose in the night and I woke up in pain but that did not happen again and all was good from then on.  My parents came to my house to say with me for the first 3 weeks at home so I wouldn't do too much which I am grateful for.  It is better to not be temped to lift (laundry, cooking, etc) Did you know that a gallon of milk full is actually too heavy after surgery so you can imagine all the things around the house that we take for granted.  Be careful and utilize any support you have, it will make your recovery faster and cleaner.  Plus we had fun playing cards and laughing together.

      I wish you all the best!  The only thing I deal with after more than a year post op is my chest is still numb off and on due to the nerves they must go through to get to the rib removal.  I can do any excercises, weights, etc. that I did prior to surgery, but now with no pain and my arms never go numb.

      It was a smart decision for me to have the surgery before permanent nerve damage could set in.  

      Oh, one last thing....they also thought I had severe carpul tunnel and spoke of hand surgery however I mentioned the posibility of the hand issue actually being the TOS problem enough times that my neurologist sent me to a Cardiac and Thoractic Surgeon for further evaluation and I am glad that he did.  I do not have any hand symptoms since the surgery.

    • suzanne44496
      suzanne44496 sharis

      Posted

      Thank you for your reply, I'm glad all went well for you, I hope it will be the same for me, your very brave having the two removed, so close together,x
    • sharis
      sharis suzanne44496

      Posted

      I will keep you in my prayers and send positive vibes across the miles.  I didn't feel I was brave, I was trying to be efficient so I could lesson the time I needed others so as not to be a burden and so I could get back to normal.

      Hope and Faith and positive thoughts will get you through to the best outcome.  I wish you the best, take care.

    • ss07saz
      ss07saz wendy176

      Posted

      Hi Ladies, I've been recently diagnosed with Vascular TOS and have a C7 cervical rib.  Had an appauling experience at the Sheffield Northern General Hospital as none or very little of the staff are aware of this condition.  I've still not had any discussions with my consultant other than he's prepared to operate.  He also told me that I would be in hospital for around 4 - 5 days and to 'google' the operation procedure - so I did and now wished that I hadn't.  I'm guessing that everyone is unique in their own recovery and some are glad that they had the surgery.  Statistically there is around 60% success rate, so I'm hoping that 'when' I have the operation I will be in that success rate.  Was initiallg given the end of Sept for my op and then 27th October however, I understand from the hospital that specialist equipment has had to be ordered although I'm not sure what that equipement was.  My questions are: did anyone spend any time in ITC and need specialist equipment or stents for their procedures?
    • rya99492
      rya99492 wendy176

      Posted

      Wow where and who did your surgery. I just scheduled mine for next month!
    • bethsjourney
      bethsjourney sharis

      Posted

      Hi Sharis!  I am so excited to find someone who had bilateral surgery within  days of each other to remove the cervical ribs.  I am having the same surgery in 10 days. One on Thursday, the next one the following Monday.  It seems like everyone says don't do it that way but this condition has me nearly disabled, and I am so much pain, that it has to happen.  And like you, I want to recover all at once. This will be my 2 & 3rd surgery in less than a year as last November i had a 3 level cervical disc removal and fusion.   Anyways questions if you do'n't mind:

      1.  Which way did the go in and take the ribs?  Mine will be endoscopic and under the arms.

      2. Was there any criteria between surgeries you had to meet in order to have the second surgery (i.e. get to a certain level of pain management before 2nd surgery such as be off the iv meds?)

      3.  Were you able to get up and walk around between surgeries?

      4. How quickly were you able to use your arms to type after the surgeries?

      5. Did you have drainage tubes simultaneously for both sides?

      I suspect I am looking at 10 days in the hospital too, so any advice/insights you can give me (including survival tips for the hospital ) would be greatly appreciated.  I am so nervous. 

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