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    Old 07-14-2005, 12:46 AM   #1
    carrot16
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    Question I cannot get a diagnosis

    I have had severe left scapular pain for years now. I also had neck pain which was releived by a spinal fusion of C5-6 3 months ago. The problem is that although I told both my orthopedic surgeon and my neurosurgeon that I thought these problems were separate, they insisted that the scapular/ arm pain would be relieved by the surgery. Well the pain is not relieved and now I can't seem to get a diagnosis. If anyone has suggestions I would appreciate any help. It feels as though someone is stabbing me with a knife underneath my left scapula constantly. I've had some diagnostic tests after begging for them, but no real answer. I have scoliosis, bone spurring, and an arthritic rib on x-ray. I had an MRI which shows dorsal spondylosis at one of the thoraciclevels, but my doc says it's too low to account for the pain I'm having. This has been going on for years and has ruined my life. I am always in pain. I cannot work and don't have any income. Each time I see my doctor,(the orthopedic surgeon,) I leave in tears feeling as if I'm getting nowhere. I really need help and don't know where to turn. I used to be very active and not being able to do anything is really adversely affecting me. If anyone has had something like this and found a solution please help me.

     
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    Old 07-14-2005, 02:36 AM   #2
    shamrocks2121
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    Re: I cannot get a diagnosis

    Where is this arthritic rib located? Although I wouldn't rule out the bone spurs being a cause for the problem, an arthritic rib that is located in the upper chest could very well be the problem. I broke a bunch of ribs in a car accident when I was young and the pain ran right through my rib cage to my spine. If it is in the upper area of your chest, that would be right in the area of your scapula (which i also broke too - wasn't fun).

     
    Old 07-14-2005, 03:18 AM   #3
    Josie115
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    Re: I cannot get a diagnosis

    Have you considered a sports med orthopedic? Shoulders and all the parts that work together can cause severe pain and they are sometimes difficult to diagnose. I knew what happened to mine.. I fell skiing, but since my fall and my upcoming surgery, I've done alot of reading on shoulder injuries and problems..it can cause referred pain or it could be a mechanical issue. Just a thought..

     
    Old 07-14-2005, 04:11 AM   #4
    flyonthewall
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    Re: I cannot get a diagnosis

    Is your ortho a spine specialist? Have you run this past a physiatrist?
    fly

     
    Old 07-18-2005, 10:28 AM   #5
    carrot16
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    Re: I cannot get a diagnosis

    Thanks for the ideas. It's nice to hear from everyone. As far as it goes the rib is the bottom one, my physiatrist sent me to the orthopedist who is a sports med guy. I have had scapular fils which don't show anything. Please keep the ideas coming, though. Thanks again.

     
    Old 07-18-2005, 12:38 PM   #6
    flyonthewall
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    Re: I cannot get a diagnosis

    But is the sports med guy a spine specialist? Does he have a spine fellowship.

     
    Old 07-26-2005, 08:00 PM   #7
    carrot16
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    Re: I cannot get a diagnosis

    I'm not sure if he is a spine specialist or not. He did do my spinal fusion. How can I find out if he is? If he isn't, how do I find one? Thanks again for the help. Also I went for my annual hematology consult today and that doc suggested that I see a neurologist. Any idea how to find a good one of those? Oddly enough he didn't make a recommendation.

     
    Old 07-27-2005, 04:32 PM   #8
    carrot16
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    Re: I cannot get a diagnosis

    Thanks so much. I'm going to check out the thread right now. Honestly I've had more support and suggestions here than from any physician all these years. It seems like each one has their own little idea, and either it pans out, or they pass me on to the next guy. At least now I have some hope that my next specialist, (spine as you've suggested,) will be the one who can get it figured out and maybe I can get rid of some of this pain. Thanks again. I'll let you know how it goes.

     
    Old 07-27-2005, 05:10 PM   #9
    carrot16
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    Re: I cannot get a diagnosis

    Well, as it turns out the guy is a spine specialist. I don't know what to think. I guess I'll have to find another spine specialist for another opinion. Maybe I'll try a neuro. Thanks for the info, though. At least I can make sure I get a spine specialist. By the way, that thread was very informative- thanks. If you guys can think of anything else I should be doing, please let me know. I think I'll spend some more time poking around the site too. I'm sure there's lots more info here. Thanks again.

     
    Old 07-28-2005, 12:53 PM   #10
    Wingingit
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    Re: I cannot get a diagnosis

    Well the pain is not relieved and now I can't seem to get a diagnosis. If anyone has suggestions I would appreciate any help. It feels as though som
    eone is stabbing me with a knife underneath my left scapula constantly.

    I have lived with severe chronic shoulder and scapula pain for years and I feel your pain! I know how difficult it is to be suffering without a clear diagnosis, all the while, doctors keep trivializing your pain and telling you that you "shouldn't have this much pain"...I've heard those same words many a time from ignorant doctors who find it easier to discount it as being psychological...I'm sorry.
    I am curious...do you know if your scapula is "winging" at all?
    Do you have, or did you ever have any difficulty lifting your arm over your head?
    Try pushing against a wall in a bathroom with a mirror behind you to see if your scapula wings out when you do this. If it does, you may be dealing with a nerve injury to your long thoracic or accessory nerve. These nerves supply the muscle which holds the scapula to the chest wall. If injured, they cause scapular muscle weakness and PAIN. If this is the problem, you will need an EMG/NCV test from a qualified neurologist to get a proper diagnosis. Have you had these tests?
    It is entirely possible that the nerve was injured during spinal surgery, especially if you noticed this soon afterward...could also account for the surgeons unwillingness to admit that there is anything to be concerned about.
    I look forward to your response and in the meantime you must insist on something to help control your pain. I know how devastating the pain can be and how it can completely turn your life upside down. You have the right to adequate pain control.
    Take care

     
    Old 08-01-2005, 11:32 PM   #11
    carrot16
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    Re: I cannot get a diagnosis

    It is so comforting to know that others understand and have gone through these problems with doctors. Qietcook and Wingingit thanks so much for your replies. It has been so frustrating to go through this constant pain and have to beg for diagnostic tests. My surgeon finally decided that I should have some pain management, so he said he'd call my primary to prescribe. After waiting weeks for that to take place my primary finally heard from him and gave me some pain medication. I don't understand this guy at all. He sits there and says," I don't want you to suffer like this," but he won't order any tests and won't prescribe anything for pain. Ah well, I'm done with him now and I have an appointment with another spine specialist on the 10th. As far as the scapula goes I do have winging. I did have some before the surgery, but it's much worse now. So is he pain. I have weakness in my arm that I didn't have before and I get pins and needles all the time. Nothing in my life has ever hurt like this constant stabbing pain in my scapula. Post op it was all I could feel. It kept me awake for an entire week and after a week with no sleep I couldn't think straight and I fell down the stairs trying to go get a cup of coffee at 7AM. The surgical pain was minimal, but the scapula was and is horrible. I kept telling myself that it would go away as I healed to try and get through, but it never did. Finally now after 5 months of constant suffering I have some pain control, but truthfully I don't think they make enough meds to stop this pain. I literally spend my life trying to find a position that I can tolerate. I am sure you guys know how this is, so I won't go on about it anymore. Thanks for letting me get it out. It's so good just to be able to tell someone. By the way I asked my primary about seeing a neurologist in addition to the new ortho and he said he'd consider it after my first visit with the new guy. I figure I might as well try to get the docs lined up in advance since it seems like I'm probably going to have to see many a spine specialist before I hit the right one. Thanks for the advice.

     
    Old 08-01-2005, 11:39 PM   #12
    carrot16
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    Re: I cannot get a diagnosis

    Also, quietcook and wingingit, if you don't mind, I'd like to know what injuries you guys had or have. You have both obviously been through a lot and you have so much knowledge to offer. I just wondered what you guys are going through. Thanks for taking time out from everything to give me support. You are terrific.

     
    Old 08-03-2005, 09:11 AM   #13
    Wingingit
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    Re: I cannot get a diagnosis

    Hi carrot16
    My history is a long one but I'll try to explain it as briefly as possible.
    I was admitted to the ER in the summer of 2000 with severe abdominal pain.
    I woke up after a 6 hour surgery with weakness in my right arm (couldn't raise my arm over my head in the shower). The pain at this point was not too bad, but I was on a morphine pump for surgical pain, so undoubtedly covering up the scapula pain also. I was told that this was normal surgical weakness (?) which I bought at the time (I was just happy to be alive). After weeks of the pain in my scapula being unbearable I noticed my scapula was winging.
    It took 6 months to get an app. with a neurologist for an EMG (only in Canada eh) and then another 4 months to be refered to a neurosurgeon.
    At this point the neuro said that, had I seen him at 3 months he could have repaired the injured long thoracic nerve, but now it was too late and prescribed PT.

    I went to 3 different PT's over the course of 4 years and none of them really had a clue what to do with me. They were having me do strengthening exercises (which I found out later from other wingers is a definitely NO NO with this condtion...you cannot strengthen a muscle which is not receiving any nerve impulses.
    One of the PT's did what he called a "1st rib adjustment" which involved thrusting at the base of my neck. To date, I don't know why I let him do this!

    Desperation had set in I suppose. The result of this was a "whiplash" injury and a diagnosis of bulging cervical disks encroaching on nerves, stenosis in arthritis at 3 levels and...constant neck pain...that I never had originally.
    For years I was denied any pain meds stronger than T3 and was petty much confined to the couch. In 2004 I was finally prescribed Oxycontin, which did help some but the dosage has never been adequate to cover my pain levels.
    I can only sit, walk do minor household chores for an hour or so at a time...so I am still very limited in my activities. I can't travel any distance or make any plans. I need to lie down on an ice pack/heating pad several times a day just to cope...

    On the bright side...my scapula pain has eased some and I can now raise my arm to shoulder height...so I am trying to be optomistic that things are improving. I know that if my docs could only understand the amount of chronic pain that goes along with this injury (and how the serratus weakness throws off your entire upper body, leading to pain in the neck and the opposite shoulder)
    and would prescribe adequate pain meds, I would be much more functional...that's the part that angers me...and you...rightly so.

    Please keep up the good fight for answers and the pain relief you need and let me know if there is anything I can do to help.
    Be cautious of physiotherapists who have never dealt with this injury but say they can "fix" you...run the other way. You need a therapist who understands nerve injuries and particularly those which innervate the scapula.

    A PT who views this as solely a "muscular" problem will only cause you more grief...whatever you do, my advice is not to let them mess with your neck!
    I know this post is not very uplifting, I am sorry...but this injury needs to understood for what it is...a nerve injury. Injured nerves may or may not heal and when they do, it is a very slow process...there is really no quick fix. You will have to be as patient and take it a day at a time.
    Hang in there.

    Last edited by moderator2; 08-03-2005 at 01:19 PM.

     
    Old 08-04-2005, 10:31 PM   #14
    carrot16
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    Re: I cannot get a diagnosis

    Hi Wingingit.
    Wow. You have been through so much. It really is uplifting to hear from someone who understands. I really hope you're able to get your doseage increased for your pain med. I know what you mean about needing enough relief to be able to function. I spend an enormous amount of time on ice packs and hot water bottles. Sometimes I'm just plain writhing around trying to find a position I can stand,(which inevitably doesn't happen when it's that bad.) Thanks so much for sharing your experience with me. I have been to PT also and found that it definitely caused more harm than good. I'm hoping the new doc will be a good one. I will ask about an EMG. Have you had any experience with the TENS unit. My ortho,(the one I'm done with who was going to try and write me off,) ordered a trial for me. After I finally got him to order some diagnostics, he dropped that issue. I was wondering if you think it's worth looking into further. Thanks for being absolutely wonderful in your support. Keep fighting for the pain relief you deserve too. You're making all the difference in the world for me. I know you truly understand and it's good to talk to someone who does. Take care.

     
    Old 08-05-2005, 01:56 AM   #15
    lillian05
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    Re: I cannot get a diagnosis

    Psychiatrist?! Believe me, your pain is REAL because I suffer similar pain. Ask your Primary Dr for a referral to a Pain Specialist (they work out of local hospitals). The pain Dr I go to is an anesthesiologist (sp?) and I think he knows more than any other Dr I've been to. Good luck... PS--glad to see your got some pain relief from your fusion surgery. I had the same fusion surgery in 2000 and my health has only gone downhill from there...and my pain is through the roof ...please let us know what you find about your dx

     
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