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TOS Cervical Rib Removal and First Rib removal

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Guest
Guest

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

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  • KayBear
    KayBear Guest

    Posted

    Hi everyone. I have battled with extreme pain in my neck and top.of my back since 2013 and I was told it was always postural nerve impingement. I have had lots of physio and done exercises daily for this but still get the pain. Last year in June 2017 I began physio again where I was told the pain was all in my head and I felt like a crazy person. I confided in my doctor (a locum who understood i wasnt crazy) who removed me from the program and listed me with a different hospital. I was given a new PT who told me straight away my 1st rib was elevated and she popped it back in. She mentioned a joint out of place in my neck and corrected that too. I did my exercises and had a follow up where she discharged me. Fast forward to december 2017 and my arms are numb as well as my hands - I am an optical assistant so I need them to be able to do my job. At first it was just the left so I had it looked at and was told tendonitis/carpal tunnel and golfers elbow. I was given a brace to wear during the night on my left wrist. However days after this I began to develope the same symptons on my right side. Being my dominant side i began to panic and went back to the doctors (- At this point ive started physio for my hands). Saw a different doctor who ran a few tests but I noticed her brain really ticking when she had me lift up my arms to take a pulse and she said i needed an xray. I got my results back and it has showed small bilateral (both sides)cervical ribs which is the cause. I am scheduled in for physio in two days but honestly a five year battle with this to finally have an answer just makes me want them out. My hands are in agony and reading some of your experiences makes me realise the ribs are most likely the cause. Have any of you requested the surgery? I am losing faith in physio as I struggle to grip my mobile phone these days. I am only 31. Advice would be great smile thanks!
    • wendy176
      wendy176 KayBear

      Posted

      Hi.had both of my cervical ribs taken out couple of years. Sorry to say I am worst now then before. Both arms across chest. Also collasped 5/6 in neck. Had carpol done in both hands.

      Physio made things worst. I am at a stand still with consultants at the moment. Not been able to work for over two years. Never been so depressed in my life.

    • KayBear
      KayBear wendy176

      Posted

      Hi Wendy!

      I have read a lot of similar experiences to yours and it puts me at such a cross road. I notice alot of people seem to have the extreme after pain when they cut out the muscle and nerves around the 1st rib. Have you had this done? I will get to see my actual Xrays on wednesday so I am hoping my physio knows all about this stuff because he is goi f to hate me with my magnitude of questions!

      Did you have some relief of pain after surgery or has it been a constant downward spiral in regards to pain?

      I hope you get something sorted soon! I wouldnt wish that kind of pain on anyone

    • wendy176
      wendy176 KayBear

      Posted

      Hi kay. Had my left side done first. And went great. No pain on that side . Then two months later right side done. But the swelling would not go down . And pain never went. But soon as the swelling started to go down (6 weeks or more) all the pain came back worst on both sides. Could not hold things for long without dropping them. Yes I saw my x rays on a rotation. Showing enlarged cervical ribs. But with our trying the op. I would never know!! I know this is not helpful. Make sure you get a good vascular surgeon and he or she will stick with it after op.
    • KayBear
      KayBear wendy176

      Posted

      Hi wendy,

      Thanks for the advice. I will definitly look into it! I am unsure whether i would need both sides out or just the left as that one has been the cause of all my problems. When you first got diagnosed did they put you through physio again or were you referred straight away?

    • wendy176
      wendy176 KayBear

      Posted

      Pyhsio was to painful and made it worst so know once was enough. It took 8 years to get the right consultant and then he took two weeks for op. But it was along road.
    • donna6074
      donna6074 KayBear

      Posted

      Hi KayBear,

      It sounds like the doctors may be on the right track now. So many nerves go through the thoracic outlet and can get squished there causing nerve pain (or blood clots like myself.)  An x-ray will show the ribs (I also had two cervical ribs jointed to the first ribs) and the location of them which could help start the diagnosis. My conclusive tests were the CT dye scans that showed the arteries squished based on the blood flow (showing aneurisms on both sides.) You almost have no choice but to take out the two ribs on each side and cut the muscle IF this shows to be the issue. The longer the area is compressed the more damage is being done. I am nine weeks post op for the second side. I think the median nerve got damaged some because of some numbness in my pointer and index finger (and palm) but I am hopeful it is repairing itself over time. My other surgery was flawless. Find a surgeon who has done many of these (not an easy task but well worth the effort) if it turns out you do have TOS. 

      Best of luck to you!

    • KayBear
      KayBear donna6074

      Posted

      Hi Donna,

      Thanks! How did they do your dye test? Ive read there are 3 ways, did they just ibject you with it? I am hoping to get referred for one tomorrow after i meet with the physio to see my Xrays. I have alreast had the confirmation from my doctor that its the ribs. I seem to be in more pain and discomfort as the days roll on so hopefully I can find a good surgeon. I honestly wouldnt know how to go.about that. I live in Newcastle Upon Tyne in the UK so i guess my care provider should be able to point me in the right direction. Fingers crossed! I am happy to read your surgerys have been succesful (depsite the nerve being cut). I have read a lot of failed surgerys but i guess it really is down to the surgeon!

    • wendy176
      wendy176 KayBear

      Posted

      Hi kay. I had two ways one injected and next time threw a drip.

      Get to know your surgeon you got to get trust with them if not get rid! I did until I had convinced the right surgeon for me.

      Good luck for tomorrow

    • donna6074
      donna6074 KayBear

      Posted

      Hi Kay,

      Yes, they injected the dye. Very easy and fast procedure. They made my incisions just above the collar bone for the surgeries (I hear some docs go under the arm?) Yes, ask the direct question to your vascular surgeon.. “who has done the most of these surgeries, which include a cervical rib.” Please let me know if I can answer anything else for you. Good luck!

    • KayBear
      KayBear donna6074

      Posted

      Well officially diagnosed with TOS and finally being referred! Will be receiving a letter very soon with the next steps. I am having tests done on my nerves so will go from there. Cannot believe i finally have some answers and Im so happy i found this forum with all of you. Youve all been so helpful smile
    • donna6074
      donna6074 KayBear

      Posted

      Hurray!! You are way too young for all of this! 💛

    • wendy176
      wendy176 KayBear

      Posted

      Great news. Wish you all the best. Keep us all updated.
    • yolonda92221
      yolonda92221 KayBear

      Posted

      Hang in there.  It's a relief just having an answer to know you haven't lost your mind.  You will feel better sooner than you know.

      Keep us up to date on your progress.

      Yolonda

    • dres777
      dres777 donna6074

      Posted

      Hello Donna6074, 

      I am having my cervical rib on the right removed in October by Dr. G. Pearl in Dallas, TX. 

      They have told me I will be off for 2-3 months after surgery (YIKES). I would like to know the whole process and how did they go in to take yours out? They are going in under my arm to remove mine. Did they collapse your lung to do the surgery? Who did you see? I am nervous but ready for some relief!!

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