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Thread: 6 years post op and still in pain

  1. #1
    Join Date
    Aug 2009
    Location
    St. Louis Missouri
    Posts
    48

    6 years post op and still in pain

    Hello:

    I have had scoliosis since age 6. Had first fusion T4-L4 in 1969 at age 13 at Shriners Hospital in St. Louis. In 1996 I started having severe pain and saw many pain and orthopedic doctors. In 2002 I was referred to Dr. Lenke. In 2006 I had my 2nd and last fusion T3-S1.

    I still have pain and now have other problems. My thumbs/palms are very painful now due to continued use of grabbers. I cannot bend and cannot walk or stand very long.

    My mother is in her 80's and can do more than I can. I had to retire last year at age 55. I am afraid what the future holds me since I seem to get worse every year.

    Does anyone else have same or similar problems.

    Please let me know.

    Thanks.

  2. #2
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Hi and welcome. I am only 9 months out from my last surgery but I am in constant pain
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  3. #3
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Hi dailypain,

    I am four years out from my fusion and in pain to a greater or lesser degree every day. I have nerve pain in my shin and ankle on my right leg. I have muscular aches in my low back and on days when the barometer drops, I have pain where all of the screws are in my pelvis. That pain is by far the worst. I still am glad I had my surgery because before surgery I could barely walk to my mailbox and back, the pain was so bad. Now, at least, I am functioning fairly normally. Neurontin helps with the nerve pain. The muscular aches are worse when I vacuum, so I don't do that very often. I can't do anything about the weather, but am wondering if I had the screws in my pelvis removed if I would have less pain. I try to walk as much as possible. A mile is enough for me because then my knees, hips and ankles start to hurt from arthritis. I do core strengthening exercises daily. I love to sew, line dance, read and play cards with friends. Somehow, when I do those things, I hardly notice the pain.

    Have you been back to a scoliosis specialist to see if he has any recommendations that might help you with your pain? Have you been to a pain management specialist? What have you tried and what hasn't worked for you? You have my sympathies and I hope you can get some answers to help you.

    Sincerely, Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  4. #4
    Join Date
    Aug 2009
    Location
    St. Louis Missouri
    Posts
    48
    Hi Sally:

    Yes I have tried pain management and my spinal doctor never tells me what he can help with. Last visit was last year and I waited 5 hours for 15 minutes of his time. He gives me the immpression he is tired of my complaints. But that's for the advice and I have the weather problem too.

    I hope you will be ok soon.

    Take care,

    Karen

  5. #5
    Join Date
    May 2009
    Posts
    3,745
    Karen...
    i think you have the wrong pain management doctor...
    actually, i am SURE you do!
    a pain doctor is the place to take the complaints!!
    that is the person who is supposed to want to hear them!!
    so please....consider seeing a different pain doctor...you deserve better

    i have 2 pain doctors who do want to help...
    right now, trouble is i have super low cortisol...
    gonna find out this week what it is from....
    i think it is from steroid shots...
    GP thinks it is from pituitary....

    but i have never gone to a pain doctor who did not want to help....
    yours should really be in a different specialty, if he belongs in medicine at all!!!!

    hope you find someone who does want to help you

    jess

  6. #6
    Join Date
    Mar 2010
    Posts
    2,755
    I'm really sorry to hear that you are in pain. I have not had fusion, but am wondering if you have seen a pain management specialist? Is it possible that you have another condition not related to the scolisos, such as fibromyalgia? That's all I can think of. It really makes me sad to hear of people in so much pain. I hope you can figure something out. If it makes you feel any better, my mom is going to be 70 this year and she can also run circles around me. It makes me feel lame. Take care and I hope you get some answers.

    Rohrer01

  7. #7
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi...

    While sometimes, there is nothing that can be identified as causing pain. In those cases, there's not much a surgeon can do, as they can't identify anything to do operatively. However, in your case, I would definitely get at least one other opinion.

    Hope you can find some answers.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  8. #8
    Join Date
    May 2009
    Posts
    3,745
    Karen, did you get no help with your pain from your surgeon or pain
    management doctor....
    or both...?

    jess

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