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Thread: When do you say no more

  1. #1
    Join Date
    Dec 2008
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    When do you say no more

    I am having a very difficult time with my right arm. I really thought we had the answer last summer when the surgeon did the partial removal of my shoulder blade. But I started having a nerve problem in October. I have had numerous tests and scans that do not show the problem. The shoulder dropped again and the shoulder blade is winging out. If you are not familiar with scapula winging it is when the scapula lifts off of the back and sticks out perpendicular. It causes extreme weaknesses in your shoulder movement. So you can't lift, push or pull. So you basically can't use your arm.
    I have completed 3MRI's one ultrasound an EMG and nothing unusual shows up. We have checked the brain, the muscles and nerves and for ALS. Nothing shows up as being the reason. Or as the neurological said , if we just read the test results, we would think nothing is wrong. However if we look at the patient it is obvious that there is a major problem. So is this were you give up and just accept it as it is. Is this were you turn yourself into a left handed person because you can not use your right one.
    I have been told it will be extensive persistent PT to try to recover it. I just finished PT in November so it winged off in December. I don't think starting over is going to fix it. Do you just give up and accept it as the way things go. I have been to the spine, shoulder, neurological and upper extremity specialist and no answer.2say PT and 2 say not until we figure out what the problem is. You just have to wonder about who is right.
    Sorry about this post but it is so frustrating.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  2. #2
    Join Date
    Jan 2008
    Location
    NC
    Posts
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    Did they rule this out?

    I hope they find the cause.

    One fix, depending on a bunch of things, is it fix the scapula to the rib cage per that wiki page. You might have less ROM but maybe you could still use the arm more than now.

    I hope you catch a break soon.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
    Join Date
    Dec 2008
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    illinois
    Posts
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    Sharon I don't think the link came through. We did discuss the scapula fusion. Last summer before the scapulectomy at that time the surgeon said no way because he said it would be permanently debilitating.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  4. #4
    Join Date
    Mar 2010
    Posts
    2,755
    Jackie,

    I haven't followed your case, so don't exactly know what kind of problem you are having with your right arm, yes?

    The reason I'm replying to your thread is because I have extensive trouble with my left arm. My right arm has started to be affected within the last year, but nothing like the left arm. I have had diagnosed an upper (and I mean upper into the c-spine) left convex curvature of the spine with left radiculopathy since I was 16 years old (I'm 47 now). So I've been battling arm pain/weakness for 31 years now. Recently, within the last three or so years the pain and weakness has been constant, whereas I used to have flare-ups.

    Honestly, I have never heard of a scapulectomy. Which part of the scapula did they remove and how much did they remove? What are your symptoms?

    I've done research on muscle diseases since the last year and a half or so when I developed a LOT of trouble walking AND upper torso weakness. I "thought" my dad died of ALS. He had all of the typical symptoms and once he started needing a walker only lasted less than nine years. He gradually became paralyzed until he could no longer have the strength to cough to clear his lungs and basically drowned in his own fluids. I thought nothing of it until I suddenly had trouble walking. I looked on the MDA website after my neurologist diagnosed me with an unknown muscle disease. Actually, I think it's affecting my nerves more than my muscles. The weakness is a side-effect of the dying nerves. I was also checked for everything. But, to my surprise, the MDA website said there is no test for ALS. That particular disease is diagnosed based solely on symptoms. There is also RARELY familial ALS. However, in my case, my sister has strong symptoms. Between us we have six biological children. One of her three children shows strong signs of having "whatever" this is and two of my children show signs. The two of my children that have symptoms are 23 and 25. My niece is 31, but showed signs since her teens, as did my children. But, like I said, I didn't correlate anything until I, myself, showed symptoms. Is there a reason why your doctor would suspect ALS or another dystrophy type illness? Is it just your arm and scoliosis?

    Back to the arm:
    As it turns out, part of my illness includes muscle spasms and nerve pain. I was diagnosed with Cervical Dystonia as part of this illness (but was diagnosed with the dystonia before the muscle disease). With this condition you have unusually tight neck muscles, some more pronounced on one side more than the other. You can have this disease independently of any other illness so don't let me scare you off. The treatments that I get that help my arm are aggressive trigger point injections every two weeks and Botox injections every three months. I get these injections in my neck and upper scapula muscles. The reason is to keep these muscles loose enough that my arm gets proper blood flow AND so that my nerves don't get pinched by my rigid muscles.

    On two separate occasions I either missed an appointment or couldn't get in within the two week time period (don't remember this part). I just know that my arm was weak and very, very painful. My hand started to turn red and swell plus I had some pretty significant nerve pain and nerve posturing where the arm and hand actually curl up and inward. My PCP, who usually does these was able to get me in the first time. He gave me only three trigger point injections (I usually get six to ten injections each time). By the time I got home (about a five minute drive) the pain, swelling, and nerve posturing were gone! The second time it happened my PCP was out of town and my Botox doctor was willing to come to his office ASAP. Now this guy is at a different, larger hospital about an hours drive away. He gave me the same three injections and my symptoms were gone.

    Now I'm telling you this story not knowing what your symptoms are. But if they sound anything like mine, you might have Cervical Dystonia. These treatments are life savers, no joke. So you might want to look into Cervical Dystonia as a cause for the problem in your arm. If/when you look up Cervical Dystonia you will find that it can cause some very significant head jerking. I had a very small tic that no one could see unless it was happening and I would tell them to look. It was not noticeable at all. My doctor never saw it and seemed to have a hard time believing me when I told him about it, as I had been receiving treatments for quite awhile at that point. Regardless, you don't have to have tics to have Cervical Dystonia. My dad had a HUGE upper trapezius build-up that forced his head to the side and downward. Fortunately for him he had no pain with it and no arm symptoms that I knew of so never had it treated.

    So, if you have a prominent muscle on that side or tight neck muscles, I would suggest looking into Cervical Dystonia as a cause and try the treatments. My muscle mass has gone down significantly over the past couple of years. When I look back at my scoliosis x-rays before I started treatment vs. my most recent ones, I am shocked at the difference. I have way less trouble with my arm and I can turn my head farther to the left. It's truly amazing the difference in my arm, neck and head that I have since starting the treatments.

    I hope you found this somewhat helpful.

    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  5. #5
    Join Date
    Jan 2008
    Location
    NC
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    Quote Originally Posted by jackieg412 View Post
    Sharon I don't think the link came through. We did discuss the scapula fusion. Last summer before the scapulectomy at that time the surgeon said no way because he said it would be permanently debilitating.
    Jackie it is just the wiki page for winged scapula.

    https://en.wikipedia.org/wiki/Winged_scapula
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  6. #6
    Join Date
    Dec 2008
    Location
    illinois
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    Yes that is what a winged scapula is like. However the nerves and muscles have been checked twice by neurologist and an EMG. None of them are showing as the problem . Not that you want a problem but finding the correct nerve would help in the treatment. It truly makes it hard to do normal activities.
    Thank you for your help and interest.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  7. #7
    Join Date
    Dec 2008
    Location
    illinois
    Posts
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    ROHRER, thank you for your information. I had 25 percent of my scapula removed in June. It was the lower point at the spinal side. It had trapped the shoulder blade down under deformed ribs from my scoliosis. I was told rib 3,and 5 where the problem. The section of the scapula was trapping since thoracic hardware was placed. Then it just got so trapped that I couldn't get it out. That surgery appeared to help for about 5 months.
    Now it winged off my spine. It is dysfunctional and causes an abnormal movement in my right arm. I have had an ultrasound of the brachial plexus so some of the muscles of the neck have been checked.
    I was also surprised that there isn't a test for ALS. However they don't think it is ALS.. other then my arm everything else is working OK.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  8. #8
    Join Date
    Mar 2005
    Location
    east coast
    Posts
    359
    Quote Originally Posted by jackieg412 View Post
    ROHRER, thank you for your information. I had 25 percent of my scapula removed in June. It was the lower point at the spinal side. It had trapped the shoulder blade down under deformed ribs from my scoliosis. I was told rib 3,and 5 where the problem. The section of the scapula was trapping since thoracic hardware was placed. Then it just got so trapped that I couldn't get it out. That surgery appeared to help for about 5 months.
    Now it winged off my spine. It is dysfunctional and causes an abnormal movement in my right arm. I have had an ultrasound of the brachial plexus so some of the muscles of the neck have been checked.
    I was also surprised that there isn't a test for ALS. However they don't think it is ALS.. other then my arm everything else is working OK.
    Hi Jackie,

    I Just wanted to share this article I found with you.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2729973/

    Probably unlikely cause of your scapula winging, but just so you can see there are cases where winging occurs without nerve/neurological causes.
    30 something y.o.

    2003 - T45, L???
    2005 - T50, L31
    bunch of measurements between...

    2011 - T60, L32
    2013 - T68, L?

    Posterior Fusion Sept 2014 -- T3 - L3
    Post - op curve ~35



  9. #9
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,161
    Poor 12 y/o girl, she weighed 83 lbs and was carrying a backpack that weighed 40 lbs, half of her body weight. No wonder she ruptured her back muscles!
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  10. #10
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    Thank you for the article. I will be sure to ask about the possibility of an injured muscle. There could be an injury during these long fusions. It is also possible that I have lifted something that caused a problem. I am hoping that the upper extremity s at the University of Chicago has another idea. When I saw him on December 24, he wanted everything big ruled out first. Like a brain lesion or ALS. Then he said we will look further into the reason.
    I don't feel more PT is the answer unless we know the reason. I have been to PT for years for a scapula problem. The actual winging is new. About 5 or 6 weeks Ago.very frustrating..
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  11. #11
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    Just an update. All tests are coming back normal. That would be a good thing if my arm was acting normal. This is a puzzle. The neurologist has sent me back to all my specialists to show them ,while test results are showing that there isn't a problem, that there is indeed a major problem. I will see the University doctor on Tuesday and will be bringing him all of these results. We even did blood work for some genetic diseases and nothing showed up. As my spine specialist said, let's hope the doctor at the University can put the puzzle pieces together.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  12. #12
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    I hope you find an answer. But if not, maybe you can try the Mayo clinic. I think they specialize in solving medical mysteries.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  13. #13
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    Thank you. Mayo had crossed my mind. I live in Illinois so it is a possibility. A winged scapula problem is hard to describe . It is another disability that doesn't show. It comprises most of arm movement. it is hard to treat and hard to fix. I go on Tuesday to the University doctor. I have copies of 8 different tests. I have 4 discs for him to review.I hope he can shed some light on what to do.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  14. #14
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Hope you get some answers.
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  15. #15
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    That's Melissa. Tomorrow is the day. The trip to Chicago is difficult but I hope he can shed some direction on the next step. I will post what happens.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

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