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Thread: New info. re: pain...please help!!

  1. #1
    Join Date
    Jan 2005
    Location
    Woodbridge, Va (near Washington, D.C.) USA
    Posts
    6

    New info. re: pain...please help!!

    My 3rd physical therapy appt. was yesterday, and it was determined that the pain I have suffered for 15 years may be caused by (1) severe nerve damage that causes muscle spasms and/or (2) significant muscle shortening caused by my two previous surgeries and post-operative recovery whcih would have resulted in the muscles and bones contracting more than they should have.

    The PT appts. are successful in alleviating my pain while I am there. However, I find that resuming normal activities even minutes afterward bring on significant pain. I have been continuing the stretches and exercises at home. But, long term, I am still in a lot of pain.

    Please contact me or reply if you have had a similar experience to mine. Bascially, I underwent a 2nd successful Harrington rod/spinal fusion surgery, but have suffered from left scapular pain since then. At first, the pain was occasional. Over the last few months, the pain has become a daily issue.

    Please help,
    Mylinda
    Mylinda

  2. #2
    Join Date
    Apr 2005
    Posts
    913
    Mylinda,

    I can only tell you that every PT, ortho, doctor and acupuncture specialist has told me that when we do a certain exercise, and it gets worse, to STOP doing it and try something different. I have found that Pt helps me at the beginning but then it gets too much for my body and creates more pain, so I either do my exercises less frequently or do something else. Swimming has helped me a LOT as far as loosening the muscles, as it is a light but still very strenghtening exercise, and all orthos will tell you that it's the best exercise for any person with any back problem.

  3. #3
    Join Date
    Oct 2005
    Posts
    5

    Talking scapula pain

    Is it just me, or do the rods really get in the way of the scapulas?

    A year after my first surgery i had to have a revision surgery because some of my right scapula movement seemed to get irritated on the rod. For example, when I'd be getting changed and taking off my sweater, I'd feel this electrical-shock type of pain at the top beside my fusion. It happened all the time, and I went to physio almost weekly to deal with it. Then my ortho just did a simple revision surgery where he cut off the top bit of my rod in that area (and gave it to me in a jar!)

    Today, i am having very very similar pain near the bottom, left side of my fusion, which seems to be linked a lot with my scapula again. I'm going to physio for the first time tomorrow morning, and I've just requested to get on a wait-list to see an orthopaedic surgeon.

    My solution: get the rods out!

    That's my dream now.....get them out! out out out!

  4. #4
    Join Date
    Jan 2005
    Posts
    96
    I don't know if my experience is similar, but here goes. I had spinal fusion at age 56 last November, including a rib removal. Since then I have had continual pain and extreme spasms. The pain is irritation from a cross-link - easily dealt with by taking the cross-link out. The consultant now thinks the spasms (and pain associated with them) are 'intercostal neuralgia', from damage to the nerves controlling the muscles between the ribs. The idea is that removing the rib caused damage which means these nerves are permanently stimulated, so always making the muscles between the ribs tighten to their maximum degree. Physical therapy or any movement makes them worse, and they never let up below their base level, day or night. The next step is to look at confirming this diagnosis and then investigating what can be done - he mentioned putting a freezing probe into the nerve to put it out of action. I don't know how successful and/or applicable the freezing treatment is. Just hope it works at least to some extent!

    Best of luck,

    Lavinia

  5. #5
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    pain after one year

    Lavinia:
    I see that you are just a year post-op. I still had assorted pains that time also. My pain specialist taught me how to employ an ALPHA-Stim (aka TENS) unit to painful areas as they heal. The parts that drove me nuts were the shoulder blade and the side incision.

    If I did a new activity I would feel it. Also scar tissue drove me nuts. I went to a muscle therapist who manually broke up scar tissue under my skin. It is painful but it works in the long run. Sometimes nerves can be bound-up in scar.

    I also have a theory about "suit of armor"feeling:
    I recently went on a long auto trip around the US for 4 weeks. I found I got that same feeling after not having it for a long time. With the extensive fusion I have, many chest/abdominal muscles seldom get used - so they shorten and tighten. I went to my Pilates trainer who devised some ISOMETRIC chest/abdominal exercises as part of my usual program. These in no way make any movements against my fusion.
    It helped tremendously after only one session. Also some breathing exercises to expand my back ribs.

    I guess we are like cars which are high maintenance. Doing these things keeps me pain free.

    Karen
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  6. #6
    Join Date
    Apr 2005
    Posts
    913

    Taking out rods

    I also had a lot of pain in my scapula, and after a year and four months and it getting worse, they also took out one of my hooks, at the top/right level. The pain was gone after, but now it's acting up again, wether it is caused by a loose screw or bursitis I will know after my surgery soon.

    I wouldn't recommend getting all the hardware out, the curve might come back. I also believe that time, exercises and strenghtening helps a lot, and if not one small area of the hardware can be taken out if it gets worse.

  7. #7
    Join Date
    Oct 2005
    Posts
    5

    Thumbs up physio and ribs

    I just got back from physio this morning....

    now, although I thought that perhaps my scapula was involved in the current issue, my physiotherapist has suggested that is more related to where the rib meets the spine.

    he has suggested that I lie on my back on a tennis ball moving it to push under each rib.....he called this 'compression work'........he did compression work with his hands on my ribs on my back, and i must say that for the next hour, I felt like I could breathe in a new and refreshing way.

    something for you all to try?

  8. #8
    Join Date
    Jan 2005
    Location
    Woodbridge, Va (near Washington, D.C.) USA
    Posts
    6

    Thank you!

    Many, many thanks to all who replied with ideas and thoughts. I will definitely try the techniques and I will use the information to arm myself with knowledge before seeing the surgeon again. I hadn't even considered having part of the instrumentation out....I thought it was an "all or nothing" deal!

    Thanks again!
    Mylinda
    Mylinda

  9. #9
    Join Date
    Oct 2005
    Location
    Kansas
    Posts
    22

    scapula pain

    It seems we are in the same boat. After my second fusion surgery I too have had worsening scapula pain and muscle spasms. I fired the surgeon that did my second surgery because he claimed the problems I am having couldn't have anything to do with my most recent surgery since he did not go anywhere near those muscles. I found a new surgeon and he and I are going to get to the bottom of the problems. I go for a bone scan to see if the fusion took and if any hardware is loose. and then a nerve injection to stop the headaches, and possibly removing the new hardware. My pain has been getting increasingly worse over the past 8 months and the reason for that is because most of my back was numb immediately after surgery and as the nerves grow back together the feeling comes back more and more and I'm in more pain.

    I'll let you know how this works out, all I can say is you are not alone and hang in there. If one doc doesn't give you the answers you seek go to another one and another one until you find one that will fix the problem and not just medicate it.

    Good Luck
    Georgian

  10. #10
    Join Date
    Apr 2005
    Posts
    913
    Gigi...

    Just want to mention that bone scans and X-rays are not 100% accurate when it comes to see if hardware is loose/and or broken, and if you have pseudoarthrosis. I did both and everything came out fine, but my rod is broken and they think I could have pseudarthrosis and maybe some loose screws and only when they operate me next month they will see all that is wrong. Also, if you have a pain that is located only in a certain area(like the scapula), maybe just having that portion removed is best instead of all the hardware. I just wouldn't want you to go through additional surgery and wanted to share some of my experiences.

    Good luck to you, hope you get better
    Last edited by sweetness514; 11-30-2005 at 02:22 PM.

  11. #11
    Join Date
    Oct 2005
    Location
    Kansas
    Posts
    22

    bone scan

    thanks for the info, another surgery is the last thing that I want right now, but I can't stand the pain anymore. If some doctor were to tell me that rubbing cow manure on my back would stop the pain I would try it. The Bone scan results have not yet been read by my doc but I can tell something isn't right. I've seen enough x-rays and such of my back to know that some portion if not all of the new fusion hasn't healed yet. I also had a ct scan yesterday and it doesn't look any better. Now the curve in my neck has gone from just a slight curve, to a dramatic s curve. Not sure of degrees as my surgeon hasn't seen it yet.
    I am just so sick of doctors at this point.

    thanks for the support
    Georgian

  12. #12
    Join Date
    Jul 2005
    Location
    California
    Posts
    269
    I too had that pain in my scapula. It was between my spine and right scap. It hurt for me to breathe, raise my right arm above my head (could only lift it to 90*), and I never regained the feeling in my skin from the surgery. My surgeon too did a bone scan and multiple x rays, but nothing gave him an answer. So...after months of wondering what was causing my pain, the only thing he knew to do was remove part of the rod on the right side where all the problems were. My first surgery was Feb. 1 2005 and I had my rod removed on Dec 15 2005. I have not had the pain since. I feel like I can breathe and I am getting the range of motion back in my arm. I can now feel the skin and know when someone is tapping me from behind.
    He contemplated how much of the rod to remove, and I told him "scars heal, get it taken care of!" He took the whole rod on the right side out and left the one on the left for stability. He also did a bit more bone grafting to help with the fusion. I feel so much better after the surgery, it feels like such a big burden was lifted from me. And...I too got to keep my rod and screws. They are fun to show off. lol.

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