TOS...diagnose... not the rib surgery?

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I am 30 years old and live an active life. I have had on going isses the entire year...and finally have answers.  PT has done nothing for me.  My doctor does average 10 a year.  At this point my rib went down. I have the nerve pain. The surgery is not removing my rib at this point. However, he said he would go in and make it not so narrow.  Im not sure what all this involves but he said its risky and there is no gurantee.  Has anyone had this surgery? I was left with the options of living life and keep doing PT ...or trying to have this.   opinions???  

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7 Replies

  • Posted

    First of all a little background might help, cervical rib or first rib? Also what facility are you going to for treatment or surgery? I had the surgery a year ago and the surgeon disabled me for life. I'll try to answer any questions I can for you.. I have learned a lot over the past year and facing more surgery to fix the problems.

    • Posted

      Hershey, PA  Penn State.  Dr. Rizk.   My first rib was elevated...however, it has went down.  I would not be having a rib removed. surgery for making it not narrow I am assuming.  I have many questions I plan to ask but i wanted to hear from people who have gone through this. I have had all sorts of tests this year and seeing the MRI of the brachial plexus i am confident with the diagnosis. 
    • Posted

      OK not the same place I went to.. I'm being treated at John Hopkins now but have they tried botox injections into the neck muscles yet to see if surgery will work? From what I have learned that is one of the first test that should be done.

    • Posted

      well, how did they mess you up? botox is not something i was interested in. I want the fix not a bandaid for temp relief.    Im confident in my doctor and appreicated his honesty.  Which is why i am taking the time to talk to people.  I live an active lifestyle and really want to heal.
    • Posted

      Yea I did to was very active but only test they did was CT, MRI, and emg. Therapy for a year then advised surgery in which I agreed. The surgeon cut the wrong rib "cervical rib" stretched my nerves that control my upper arm, shoulder, and color temp. They also herniated my upper lung which is now attached to the nerves by scar tissue. Surgeon put in his notes that he cut the first rib bit didn't . I lost the use of my upper arm and shoulder and with the lung issue I have pain 24/7 went from 260 lbs all muscle down to 180 since Feb with loosing all mass. Haven't been able to drive or even pick anything up without sever pain. The botox injections can have a permanent results but takes about 4-5 weeks work to see if they will actually work. I'm glad your surgeon is not knife happy that's a plus. Also it's important to make sure to do the surgery under the arm and not the clam shell on the neck. That from what I understand now is what caused all my problems. John Hopkins Dr said your blind going that way and really can't see everything and where they made the mistake on cutting the wrong rib. Now I have permanent nerve damage and lung of course . I have been through it all over the past couple of years really wish I would have went to the facility I'm working with now at first for a second opinion.

    • Posted

      Thats horrible!  I am sorry to hear all that! I'm glad you are in better hands now! luckily my scalenes are not very involved. He said it would be around the arm pit area not the neck.  And my rib is NOT being removed at this point.  its a lot of pec area and right below the clavicle.  The minute i become active it begins to pain me....however, i cant stand sitting around and doing nothing.  I cant even walk my two dogs together anymore.  can only steam mop one floor at a time as well! So it sounds like the rib removal is more riskier....and as long as my dr is comfy w the bundle of nerves...I should come out decent.  I appreciate yo sharing all of that with me.  Its scary! John hopkins is amazing! I have done much research on the team there bc I thought that is where i was going to have to go. Stay positive <3 

  • Posted

    Hi Cleo

    I'm 3wks post op from partial rib resection and scalenectomy after 2yrs exhausting conservative therapies, mostly physio. Honestly, I feel great!! Unlike poor Roger there I had a fantastic vascular surgeon who is very knowledgeable regarding TOS and highly experienced in decompression surgery. It was his last resort. He only decided to do it after ultrasound showed my artery and vein had narrowed significantly over 18mths, posing a serious risk of clotting. My Dr only takes out what is absolutely necessary to decompress the area, which in my case was a small part of the rib and scalene. Pain afterwards has been minimal and I'm already back at gym for cardio and should be back into weight training later this month.

    I'm afraid my Dr's opinion disagrees wih Roger's Dr on the surgical approach. My Dr uses the supraclavicular (above collarbone) approach as he says it is less invasive and allows him to see more clearly. The difference comes down to the skill level of the surgeon and location of the problem. Under the armpit (transauxilliary approach) carries higher risks with lung problems and infection apparently. Luckily though I dont have cervical ribs as these almost always have to come out in the case of TOS because they are extra ribs that crowd out the space and can cause greater damage to the SCA and SCV.

    My best advice is do your research and find a vascular surgeon how is really skilled with TOS. Maybe look to those who treat athletes. This injury is apparently more common in swimmers and baseball players, so maybe looking in that direction could help you?

    Hope this helps... best of luck

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