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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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  • wavington
    wavington Guest

    Posted

    What type of doctor did you see that told you you had tos? I was wondering because no doctor I've been to so far know what I have
    • jadedjan122
      jadedjan122 wavington

      Posted

      My regular PCM took x-ray of my neck area to see what was causing mt left arm pain that I had since I was a youngster. They found what they thought were bilateral cervical ribs, found out later that it was elongated transverse process, worse on the left. Did several EMG Studies that proved nerve damage, also a ct scan to 40% compression of my left Subclavian arterty. My vascular surgeon would not do the surgery if they were not for sure that it was TOS, he said that most of the time it is not.. Best of luck to you! Hope you find out soon what it is. smile

    • jasmatic7
      jasmatic7 wavington

      Posted

      Hey there ! After having blood clots for the first time in 2008 in my subclavian vein, my TOS was not diagnosed until 2013 (left), then 2015 (right). Which means it was harder to diagnose my right I guess (or it was missed). I was diagnosed both times by different vascular surgeons. 
  • Kp35370
    Kp35370 Guest

    Posted

    I found out in may this year that I had TOS I had been having my pain since 2010. It didn't start to occur until after my deployment to Afghanistan. Not one doctor in the military could figure it out. It took four years for them to tell me it was TOS. I had surgery on both shoulders and just recently had my eight side done 2 months ago. I am still in so much pain, I was told yesterday by my PT therapist that my right shoulder blade is lifting up instead of sliding out. And she says that normal, umm I have to disagree with that because I didn't have this issue with left side. Its nice to know i'm not the only one who has gone threw the surgery.
  • RosieH666
    RosieH666 Guest

    Posted

    I found out I had a cervical rib 3 years ago due to a lump in my neck. There was minimal pain and acheing for a year and a half, then it gradually got worse and now it is agonising. I lose feeling in my hands and shoulder, it wakes me up at night........ im sure you all now how horrible the symptoms are!! So i have pushed and pushed to have something done about it and have finally seen a specialist today. I had to travel from preston to lancaster to see the nearest specialist, and he was very reassuring and really knew his stuff. He sent me for an xray and says i will need to have more scans at a later date. He did say that the rib is quite large, and explained the surgical procedure to me (he will go in through the armpit.) I am a worrier, and since this morning i have done nothing but think about it! I have even watched youtube videos of the surgery, i think im just torturing myself to be honest. its nice to have found this discussion forum and hear about other peoples experiences. I am still quite worried as i have fibromyalgia as well as TOS and have low pain tolerance and most days i feel bruised and sore as it is, so i am really worrying about my recovery and how bad its going to be. Everyone keeps telling me to stop thinking about it but i cant get it out of my mind. I am on a performing arts course and i am a dancer and barmaid, so im worried about it effecting every aspect of work and my studies too. 

    think i have just winged here, sorry, think i just needed to get these worries out to people who know what im going through!

    Lovely to hear about peoples recoveries, and i hope those who still suffer with pain recover further very soon!!

    • Jopo
      Jopo RosieH666

      Posted

      Before having your surgery at lancaster (I had my surgery there) I would highly recommend a second opinion.

      From my experience, I was in hospital for 10 days as he went on holiday immediately after doing my surgery on Friday and did not return till 10 days later and I had some complications and no one wanted to mess with another surgeons work. Some of the staff on the ward were actually awful too, I was not happy with the care I received.

      I was then back in my local hospital after a night at home for 6 days till they could get hold of me Wilson as he was away again.

      I had the other side done by him too & neither side is better, my pain is now more widespread and worse tbh.

      If I were to do it over I would have a second opinion with me Thompson in Exeter.

      I didn't feel as though he went into details of possible complications.

      I know another of his past patients too who is not happy with their outcome and his life has been changed by the subsequent surgeries that were performed.

      Good luck, your story sounds a lot like mine.

  • Ophi352
    Ophi352 Guest

    Posted

    Just to add my experience in to the mix.  I had the operation to remove a cervical rib last week following emergency admission to hospital with little/no blood flow to my left arm.  The cause of that was a clot but during investigation it was determined that I had this cervical rib, (actually two of them), and in order to prevent possible recurrence and potential loss of the arm should it recur that surgery would be the best idea.  I was admitted on Monday, operated on on Tuesday and released from hospital on Wednesday.  It is now the following Monday and I am back at work.  I have had very little pain, more almost like strange deep muscle aches and a little breathlessness plus some nerve 'twangyness' in my arm.  I am completely off the painkillers and feel no need for them.  Not 100% by any means but certainly well on the road to recovery.  

    Judging by the posts on this forum I have had an extremely positive experience with this operation.  Just wanted to note that it is possible!

  • nathan_96188
    nathan_96188 Guest

    Posted

    Hello,

    I currently have TOS from a football injury about six months ago. In about seven weeks, I'm having surgery to get my left first rib removed. I was just wonder how the procedure went. What you did before the surgery, how long were you in the hospital, how has recovery been? One my main worries is, do I need a urine catheter during surgery?

    Thanks,

    Nathan

    • Jopo
      Jopo nathan_96188

      Posted

      First off no catheter needed, at least in the UK they don't put them in as standard.

      Who is doing your procedure and have you tried any other more conservative therapies like physio to see if anything will help?

      My outcome wasn't entirely positive tbh. But it really varies from person to person. Some are out of hospital after a couple of nights, I was in for 9... It's not a simple procedure and there is potential for complications, have these been discussed with you? Have you sought a second opinion?

      For full recovery it can be long and hard, but again some do seem to do a lot better. I think age and overall fitness makes a difference and how long you have been suffering.

      In the UK the surgeons seem to underestimate recovery time significantly from my experience and from what I've read of others.

      Wishing you all the best.

    • nathan_96188
      nathan_96188 Jopo

      Posted

      I hope there isn't, for my sake! haha

      My doctor is Dr. Fayad from Marshfield, Wisconsin. He's a vascular surgeon that I've been going to for the last six months. I had a CTA last week and he said based off of how my recovery has been going over the last six months, surgery, in his eyes, is the best option. We thought about a second opinion, but we don't where to go.The doctor estimated I'd be in the hospital for 2 days and out of school for about 10 days. He said there's always some risk, but he said the rewards outweigh the risk.

    • Jopo
      Jopo nathan_96188

      Posted

      10 days seems ambitious tbh... Though you are young if still in school? So that will help your recovery and the injury is recent so again in your favour. But don't get back to doing too much before you are ready as that can hinder your recovery.

      Have you asked how many of these surgeries he has done before? It's no simple surgery and there are a number of reputable drs in the states, but it often means travelling.

      If I was in the states my first choice would be Dr Donahue at mass general. He comes very highly regarded and I have heard no complaints of him.

      Are you on facebook? There is a group on there, it's regularly used and full of advice and support. I think if you searched thoracic outlet syndrome you would come up with it.

      Or there is a group on a forum called neuro talk, they have a list of recommended drs and most of the members are state side, whereas in here I think mostly UK based.

      Good luck smile

    • Jopo
      Jopo

      Posted

      Oh & yes there are always risks... That's a bit of a cop out answer as far as going into details... I would ask him to be more upfront and honest about what can go wrong and what the long term implications are.
    • Ophi352
      Ophi352 Jopo

      Posted

      I was back at work in 6 days. From what I've read it can vary massively. In some cases it takes weeks. Probably a lot of variants contribute including surgeon, how complicated the surgery is, (mine was described as uncomplicated), the patient's General health and fitness prior to the op, how you react to a general anaesthetic and any meds and painkillers pre and post, etc., etc.
  • kimberly40375
    kimberly40375 Guest

    Posted

    I am meeting with a Cardiovascular Surgeon on the 18th of this month to schedule the surgery. I am very nerveous to say the least. It's refreshing to see that there is someone out there that didn't have a bad experience. I am praying that I will have a similar experience. I have Arterial TOS. Unfortunately, I was born with it. I have been having symptoms all my life and never knew that is was all due to this. Now my artery is compressed. Thanks so much for your insight on the operation and recovery after.
    • Ophi352
      Ophi352 kimberly40375

      Posted

      Just FYI, mine is also arterial.  However, I was never aware of it until I became so dehydrated that the blood flow could no longer make it to my arm as it was already under reduced pressure due to the TOS 'symptoms'.  Presumably I had always had reduced blood flow to that arm, and looking back I did get pins and needles more easily but nothing else really to point to any problems.  However, because I was generally fit and healthy the pressure getting to the arm was enough.  Then I had a very bad gastric bug with all the associated diahorrea and vomiting and became severely dehydrated.  Cue no/little blood getting to the arm, arm going blue and freezing cold and emergency dash to the hospital and operation.  So that bit was quite dramatic.  But I'm four weeks post op as of today and am basically back to normal except for a little tenderness around the site of the operation, can't lie on my front, apart from walking I can't exercise, (weights, toning, etc.), heavy lifting on that side is out for the moment and sometimes that arm feels a bit 'tired'.  So I think experiences vary considerably.  Mine was very positive.  Fingers crossed yours is too!
    • a26543
      a26543 kimberly40375

      Posted

      I had the same thing. Be prepared to have a very long healing process. It's a lot harder than they describe. Very difficult but worth it about five months later. And I'm a very fit 40 year old female. It was hard to grasp the fact that I was down and out for so long. But great now ten months later. 

       

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