Dr. tells me I have "Thorasic Outlet Syndrome"

Discussion in 'Fibromyalgia Main Forum' started by bubblegum, Mar 29, 2003.

  1. bubblegum

    bubblegum New Member

    Have any of you been diagnosed with Thorasic outlet syndrome? If so, what are you doing as far as treatment and what type do you have? After years of complaing, the following is my story that resulted in a diagnosis.

    I had back to back appointments first with an orthopedic surgeon who then sent me to a neurologist. After both appts I still had no answers as to the origin of this excrusiating pain in my upper body. I figured it was part of the FM but when the pain got so severe in my left arm and all tests were coming back negative I was sent to the specialists. I have severe burning in my neck and shoulders, down between the shoulder blades. Unable to lift laundry out of the washing machine because of intense pain and weakness. I was experiencing numbness in my left cheek and my lips. I can't hold my arm above my head or reach out in front of me. And I have noticed that I am swollen around the clavicle (? the bone in front by the shoulder) and that same shoulder is significantly lower. I can feel my heart throb in the tips of my fingers and at the top of my head.

    Anyways after seeing the ortho and neuro, I still had no answers. I felt like they thought I was a hypochondriac. The neuro did say that the only nerve damage that he detected was in my right thigh. He blamed everything else on weight gain! What an @##hole. I left crying.
    The following day I went to my PCP and he asked me how I was doing and I told him "not good". I asked him to go easy on me cause I have really hit bottom and I can't take this not knowing anymore. I have known my pcp all my life. He has really ticked me off in the past. Many times he acted like because he couldn't find anything on the tests that there must be nothing wrong with me. He is unsupportive with my SSDI case.

    Well he surprised me that day; he pulled up a chair and talked to me. He seemed like he really did care about me. He listened while I talked. I told him I want my life back, I want to work again so I can have my independence back. I reminded him of the many times I'd run in for a quick trigger injection so I could hurry and get back to work. He knew how dedicated I was to my work and how important financial independence is to me.

    He said it had been about 5 years since the last time my neck had been xrayed so he took some of the cervical spine. After he looked at them he came in the room with this big smile and said that I have an extra rib. He said I was born with it and it is growing from C7. He said that this rib is causing thorasic outlet syndrome and he even told me to look it up on the internet! I was clueless what he was talking about, but wondered why he was seemed so gratified. He said don't you get it Sandy, something has finally shown up on a test. You have the evidence you need to substantiate your pain. He was also surprised I was never told that I had a cervical rib considering all the xrays, catscans, mri's and even a myelogram that I have had after a car accident in 1981. He said people with a cervical rib are born with it and we are also considered the only true sufferers of TOS (thorasic outlet syndrome). I guess TOS is like FM as far as who believes it exists and the many that don't believe in it.

    Now I have to find the right surgeon and decide whether to have this risky surgery to have it removed. From what I have read so far, once the cervical rib becomes a problem and the pain starts, surgery is inevitable because it will only get worse. So to those of you who have posted about similar symptons that I had, don't take it for granted that it is FM. Always have it checked. And be persistant. I will keep you updated. I miss everyone. I haven't been posting in quite a while because it is so damn hard to sit and type at the computer. It has taken me almost 3 hours to post this cause I had to keep getting up and walk around to relieve the burining.
    I didn't mean to make this so long.
    Ciao 4 Now
    Sandy
  2. Lendi

    Lendi New Member

    I have thoracic outlet syndrome, diagnosed 19 yrs ago and had extra ribs on both sides. One of them was like an antler and had little "buds" growing off it. The surgery was not so bad, at least not in 1985. I had my left side done one day, it was the worse and the right side done the next day. They took out the extra rib and the first one below it. I'm very small, 4'8 so they felt I needed the extra room. The surgeon made an incision in my armpit so the scars don't even show much. I did have some problem and had to do a little physical therapy after, but gained full mobility back. I tried some exercises to avoid surgery, but they actually intensified the pain instead of eliminating it. I would have the surgery done again in a heartbeat if needed. I had a 2 year old who needed a mommy who could play. I still have some problems, not no-where near as severe. One of the primary symptoms is carpal tunnel like numbness but it is your little finger and ring finger and side of your middle finger. I hope this helped alittle to reassure you. If you have any questions I would be happy to answer if I can. Hugs to you. I know how painful it is. Lendi
  3. bubblegum

    bubblegum New Member

    Thanks for sharing your story! I have 2 kids, 9 & 11, and it is so hard to have to say no. They try to understand but they are only kids. They blame all of my problems on a fall I had in 1996. They saw me hydroplane off of 6 cement stairs and land on my back. I was taken by ambulance to the hospital. I fractured the sacroyliac and bruised the left kidney. I never fully regained my strength, and they have watched my health deteriorate over the years. I developed FM and MPS, sciatica and chronic low back pain.
    Who did your surgery? I want to find someone who specializes in this. Was your surgery done by a thorasic surgeon? I will probably have oodles of questions for you once I am evaluated by the right doctor. Thanks again Lendi.
    Ciao 4 now
    Sandy
  4. Tibbiecow

    Tibbiecow New Member

    I asked my husbsnd's orthopedic surgeoun what this incredible take my breath away pain in my arm/shoulder was that made it so I couldn't lift my arm over my shoulder and he said I probably had an extra rib and thoracic outlet syndrome. He gave me the name of a thoracic surgeon but it just sort of only came back a couple of times and has been gone ever since. I looked it up on the internet too- it seems the surgery sometimes just leaves you screwed up-yuck! So I must just be really lucky. Good luck to you.
    Tibbie
  5. lea

    lea Member

    How is this diagnosed, and do the symptoms differ from costochondritis?
    thanks a lot for any info.
    best,
    lea