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Removal of cervical spine rib?

Posted , 4 users are following.

steve60988
steve60988

Walter ReedHospital told mymother that I should have the cervical spine rib removed and that whenIgot older, it wouldcause alot of difficulty. Man was he right. I have occasional unexplained and unknown severe pain and disfunction due to the pain in both  wrists. That is in remission at present but now I have severe pain in cerv rib area and from it, up the center of neck and into head with bad constant headaches. /This is my first reach out. I have got to get the right medical group and procedural cure. Help? 

1 like, 14 replies

14 Replies

  • lsurgeonpatient
    lsurgeonpatient steve60988

    Posted

    Hi Steve,

    Which country do you live in?

    And how old are you?

    • lsurgeonpatient
      lsurgeonpatient steve60988

      Posted

      If you live in the USA you are lucky. There are specialist centres where the diagnostic skills & surgical expertise are concentrated.

      I recommend Dr Hugh Gelabert at UCLA. He operates more than 90 patients a year & is one of the leaders in this very unusual field. He is not only a very skilled surgeon but he is kind & compassionate. He operated on me twice, with miraculous results.

    • steve60988
      steve60988 lsurgeonpatient

      Posted

      Anything closer to the Augusta,Georgia area. I can not afford all of the testing and procedures on the West coast. Thank You for your reply.
  • Snowcraher
    Snowcraher steve60988

    Posted

    I had this done on 6/23/16. It took me YEARS to diagnose. I switched Primary Care Doctors and he was so super excellent he sent me to the Physiatrist for ECGs, Xrays where it was obvious. Only left side has been problematic. No feeling and chronic INCREDIBLE pain. My PCP put me on Lyrica 200mg 3x daily... This was the ONLY way I could have made it through to surgery. I used Tiger Balm Patches (stinky) or Lidocaine that actually helped topically on my neck area. Physical Therapy was a waste of time. My Vascular Surgeon is MY ULTIMATE HERO!!! Dr. Kaj Johansen. He is AMAZING!!! He got me on the cutting room floor in good time. Surgery went flawless. I was in the hospital one night with the pain pump. I couldn't stop giggling... if you have never had this before, it is the wildest feeling EVER. Think dead arm... I would get up to go to the bathroom and leave my arm behind. I'd have to pick it up an shove it back in it's sling with my other hand. Other than that, recovery has been going well. I started school, 1/2 day, 4 days out of the hospital if this helps you with timing. I didn't feel great but it's doable. I can ALREADY say that this is LIFE ALTERING! I can't blow dry my hair yet but I can raise my arm over my shoulder. Woopie!!! Life's little accomplishments. Still in a bit of pain but I also have Psoriatic Arthritis so I'm a hot mess already. Happy Surg!

    I sent this to someone else... hope this helps you as well...

    BEST thing I EVER did. Still have some pain with ongoing recovery but not even CLOSE to what I was experiencing. Getting better with time. Do it soon. I wish I had done this sooner. I can now blow dry my hair and put on deoderant on my right arm pit. YAY! :D Happy Day!

    • steve60988
      steve60988 Snowcraher

      Posted

      Thank you so much for sharing your story. Tell me more about the electrocardiographs. What did they produce? Did you have a cervical spine rib removed? Mine is at the base of right neck where the neck meets the colar bone. Was Dr. Kaj Johansen the surgeon who took oiut your rib? How long was the actual surgery? My pain goes from the cerv spine rib, up the center of my rear neck to my brain w/ constant headaches. What hospital in what state? What is your age and gender? I ask only to understand your activeness of daily routine. Are you a student or teacher? It sounds like your recovery proccess has been wonderful. I have to do something soon. I can not continuelife this way. I will probably need to change my primary physician as well. I have already gone through a series of x-rays, scans and electrical shock tests for carpal tunnell syndrom. The doctor after all this saId he thought I had suto gout. Thanks again, Any further info will br very much appreciated. Gof Bless You.
  • Snowcraher
    Snowcraher steve60988

    Posted

    No Prroblem Steve. I'm 39, female and I live in Seattle, WA where I had surgery done at 1st Hill Swedish Medical. The ECG's were done by a physiatrist Dr. Margaret Forgette, the one who refered me to my surgeon Dr. Kaj Johansen. These showed that there was reduced nerve conduction running down my Ulner part of left arm and into my hand. I have cervical ribs on both my left and right side but the left side (the one I removed) was approx 3 inches long as opposed to 2inches on right. Just like you, in my neck area. I was laughing with my psyiatrist because when she first saw me she stated how tight that area was... "Yah, because it's BONE!" tehehe (little Thoracic Outlet syndrome humor)  I also was getting headaches, Horrible headaches that would spider out like a boiling hot starfish across my face and into my left eyeball. Sometimes I would get facial spasms on my left side of my face which was becoming alarming. I thought I was having a stroke at first! The surgery itself was about 1.5 hours, if that. I'm a full time student now and am pretty active in general. I also have ADHD so I'm kindof all over the place, even with Psoriatic Arthritis and this nonsense. My whole life I was thinking it was from a pinched nerve or from getting hit by a car when I lived in NYC. Imagine my surprise when I saw the X-rays for the first time. The X-ray tech was training someone so we were having a field day. They even made me a dvd of the images! Great learning experience for all involved. 

    Ask me as many questions as you like. As I said, I JUST went through it. So, I'm the PERFECT person to ask. I'm supposed to have started my physical therapy but my insurance changed and I have to work that one out somehow. I went to PT before the surgery so I've been doing those exercises along with my surgeons suggestions. It's definately helping with recovery.

  • Snowcraher
    Snowcraher steve60988

    Posted

    I JUST noticed from re-reading your story. I was officially diagnosed with TOS or Thoracic Outlet Syndrome. I had never heard of it. When I read about it online I was amazed at how well it fit me. Perhaps you have been given the wrong diagnoses all these years? I don't believe this is very common, or that many doctors even know about it.

    http://www.medicinenet.com/thoracic_outlet_syndrome/article.htm

     

  • Snowcraher
    Snowcraher steve60988

    Posted

    I'm also still taking the Lyrica 200mg 3x daily. This is for nerve pain, and it WORKS... for me, at least. I tried Gabapentin (Neurontin) but my Doctors kept adding higher dosages, more pills, and I never got over the Gaba-hangover (as I not so fondly refer to it). I believe insurance needs this to be done anyway to be approved for more expensive Lyrica. It was worth it!

    I try to be mindful of my posture and trained myself to sleep on my back (NOT an easy feat!). Something like this needs to be attacked on ALL fronts.

  • Snowcraher
    Snowcraher steve60988

    Posted

    My link to info on Thoracic Outlet syndrome is being reviewed... BUT, I found this site looking for info myself. I found it under TOS. Again, you may have been misdiagnosed. This is rare. I'm having a GREAT time calling myself a Mutant... too bad there are no super powers with these extra appendages! I still maintain Mutant status with my right cervical rib still intact.
    • steve60988
      steve60988 Snowcraher

      Posted

      Hello my fellow Mutant. When I got drafted durin Virtnam, the questionaire asked if you have bone deformities. I checked yes, it is not normal, (what is normal?), however, they were going to give me 4F status, (Not fit for military service), then they wanted me to get xrays for confirmation. I did and it did show my old rib friend. Then this is where they got me, "Do you play sports"? I said, "Yes, football". The colonel wrote on my file jacket in big letters, Fit for Military Service, threw it at me and told meto leave. I was being honest, not looking to neccessarily trying to keep from going. My problems did not hit me untill I was attacked in my wrists at the age of 50 and then again at 63 untill present the full deal, wrists, neck and the headaches. Yes, I am sure you are correct, I have been misdiagnosed. I believe after reading about TOS that I also have the mutation. It is amazing to me that all of these supposedly learned doctors do not have a clue or ignorance maybe is more the word to use about he conditions. No one has ever been able to tell me WHY or Where DOES THE WRIST PAIN COME FROM. For now it is in remission. I never know when it is going to hit. When it comes on, it escolates finnally into total disability for that wrist/hand. And when both hits, I am a mess. Thank you again for your sharing. You sound like a wonderful person and I am glad you are back in school. I need to research for a closer venue of learned doctors for diagnose and remedy procedue. I simply Love Seattle. I did the city and the Space Needle thing back shortly after the needle was built for the 68 Olympics. If you have any contact information whereby I could get some East Coast collegue contact info, Well that would be wonderful. For now Mrs. Snowcraher, bye and God Bless. Untill...  
  • Jules100201
    Jules100201 steve60988

    Posted

    Hi Steve

     I have bilateral arterial and venous TOS but I do not have cevical ribs.  I have just had a right sided first rib removal and medial and anterior scalenotomy two weeks ago. My symptoms have been very varied but you are the first person that has described neck pain and headaches exactly the way I feel it.  Mine comes on as soon as I lay down or rest my head back. This had abated a few months after my initial onset of symptoms but now post surgery it is back with avengence.  I am assuming it is due to the aggravation and inflammation of the surgery but I am seeing my consultant on Monday and I will definitely be pinning him down on it as it is driving me mad.  I'm in the UK but it sounds to me like you need an MRA with arms raised and arms lowered to check whether you have any compression of the subclavian artery.  My MRA showed that I had complete compression of the artery and vein with my arms raised above my head but during surgery my surgeon discovered that there was complete compression even at 90 degrees which is why I would struggle to write or type sat at a desk.  I am assuming that you have checked that you still have a racial pulse with you arm raised?  

    • steve60988
      steve60988 Jules100201

      Posted

      Jules,

      I am in my infancy with the new study of TOS and such. As of date, I have not had the MRIs to search for the conditions you mention. Thanks to this discussion group, I am going to do so. God bless you on your post surgery rehabilitation. I am also finding that my pain starts being aggravated after I lie down. When I move around and do physical work, I have less difficulty. Thank you for your sharing.

  • Jules100201
    Jules100201 steve60988

    Posted

    Sorry, it should have read Radial pulse - like I said typing can be tricky! Lol 
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