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Thread: Before surgery it was the scoliosis, after surgery it is the fusion

  1. #1
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    Jun 2009
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    Before surgery it was the scoliosis, after surgery it is the fusion

    Hi,

    While my surgeon who promised at least 50% improvement in pain after surgery has no idea why my symptoms got worse after surgery, all the other doctors (pcp, pain, neurology, etc) blamed the scoliosis, "of course with a 45 degree curve and passing 40 what do you expect?" Now after the surgery and fusion T4-L1 they are blaming the fusion, "of course with such long fusion what do you expect?" How strange! I don't know what to believe. I feel like I'm in the fair inside the distortion mirrors room.

  2. #2
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    Hi....

    If your surgeon truly promised you an improvement in pain, than s/he's guilty of malpractice. I have to say, though, that I've never heard a surgeon actually say something like that to a patient. I hear things like "most patients get some improvement in pain" or "you have an x% chance of having some improvement in pain", but never "I guarantee that you'll get at least 50% pain relief". It's difficult to take in everything you're being told when you're thinking about something as devastating as scoliosis surgery. BTW, the doctors that I work with tend to tell patients things like "spinal fusion isn't very reliable in terms of reducing back pain".

    I hope you eventually get some relief.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  3. #3
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    Linda...
    there are several threads on forum that i will not name...people who
    have clearly said they are looking forward to being in less pain after
    surgery....with nary a hint of doubt as to whether or not that will come
    true....those threads lead me to understand why patients expect pain relief...many...many threads mention EXPECTING pain relief...
    this is not to criticize forum...or you, or any moderator....
    but when patients say they are disappointed if/when they do not feel
    much (if any) pain relief, i am not surprised....
    personally, i do not feel i can count on pain relief...one reason i am
    frozen in my tracks as to surgery (to sacrum), though i was told by every
    top surgeon i have gone to see that i need to have it done.
    re reading certain threads, it is clear which people state that they expect
    pain reduction...while other patients advise them to look forward to less
    pain after surgery. it creates expectations on the part of patients who
    are pre op.

    jess...and Sparky

  4. #4
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    Jun 2009
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    Too late now

    Quote Originally Posted by LindaRacine View Post
    Hi....

    If your surgeon truly promised you an improvement in pain, than s/he's guilty of malpractice. I have to say, though, that I've never heard a surgeon actually say something like that to a patient. I hear things like "most patients get some improvement in pain" or "you have an x% chance of having some improvement in pain", but never "I guarantee that you'll get at least 50% pain relief". It's difficult to take in everything you're being told when you're thinking about something as devastating as scoliosis surgery. BTW, the doctors that I work with tend to tell patients things like "spinal fusion isn't very reliable in terms of reducing back pain".

    I hope you eventually get some relief.

    --Linda
    I got myself into a big mess in hopes of living half a decent life. I thought I researched the subject carefully. I read two books about scoliosis surgery and none of them mentioned the possibility of worsening in the pain. The books turned out to be infomercials posing as objective sources. Those people who post about how glad they are to have done surgery are a self selected population. Those not doing well are too much in pain to be able to send messages. My pain keeps on worsening and I do not know where I'm heading.

  5. #5
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    i am so sorry to read of your worsening pain, Sami...
    is there any chance the pain is below the fusion and could be
    caused by not being fused to sacrum...?
    is the pain in lumbar or thoracic area...?

    i truly hope there is a doctor who has an answer for you....
    since the surgery is done, and cannot be reversed...would you consider
    being fused to sacrum IF a doctor told you it would relieve the load the
    unfused portion of your spine is taking...?
    have you talked to a pain management doctor to see if there is any
    tx, like shots, that might get you out from under the pain long enough
    to get a break from constant suffering...????

    i really hope you do not give up on doctors completely...
    there may be one...like Dr Hey?...who could still help you.

    jess...and Sparky

  6. #6
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    Quote Originally Posted by Sami View Post
    I got myself into a big mess in hopes of living half a decent life. I thought I researched the subject carefully. I read two books about scoliosis surgery and none of them mentioned the possibility of worsening in the pain. The books turned out to be infomercials posing as objective sources. Those people who post about how glad they are to have done surgery are a self selected population. Those not doing well are too much in pain to be able to send messages. My pain keeps on worsening and I do not know where I'm heading.
    Has anyone evaluated you for complex regional pain syndrome? There is a time window of treatment as I understand this. Good luck.

    http://www.mayoclinic.com/health/com...ndrome/DS00265
    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."

  7. #7
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    Sammie,
    I can relate in a way. I chose to do a short fusion and still have some pain; however, my pain come above and below the fused area. The actuall area that was fused feel 100% better. I new there was a risk of the strain, but wanted to try it anyway.

    I hope you find a solution to your pain.

    Tamena
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

  8. #8
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    Mar 2010
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    Sami,
    I'm so sorry to hear this has happened to you. My doctor specifically told me that surgery would make my pain worse. I know how you feel when you said you just wanted to live a half way decent life. My scoliosis isn't one of the HUGE ones, but it is and has been very painful for most of my life. I honestly don't know what life without pain is. If a doctor promised me pain reduction, I probably would have been all about having surgery, too. Don't beat yourself up about it. I don't remember if you said where your fusion is, but there are things that they can do if they can get to your spinal cord. I was offered an intrathecal morphine pump at one time. I turned it down at the time. Now I'm on so many meds, it makes me sick to think about AND I'm still in pain. Is your pain much worse after surgery or about the same? I would definitely go and see a pain management doctor.

    Sharon,
    That syndrome you posted about sounds awful! At first I thought it was like a "fibromyalgia" type of thing, but not so. There are definite symptoms that can be pinpointed, unlike fibromyalgia which is pain of unknown origin. The treatments seem to be similar, though.

    Okay, I reread your post. You are fused T4 to L1. Depending on where your pain is, they may be able to get in above or below your fusion with the catheter if you choose to have a pain pump. For those who say scoliosis is not painful, Ppppbbbbllllaaa! There seem to be more of us with the curves in the 40 to 50 degree range or less that have very painful curves. I don't know what separates those with painful curves from those with no pain, but it is very real pain and this deformity really makes our lives living torture! Whatever the source of the pain is with the scoliosis, surgery obviously isn't always the solution. So why do surgeons even do the surgery with pain being a major criteria in adults? Arghh.

    Sorry if this post sounds odd. I'm having a VERY bad pain day. =(
    Last edited by rohrer01; 04-13-2013 at 04:32 PM. Reason: reread Sami's original post.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  9. #9
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    I have been on here over 5 years and there have been many people posting, especially awhile ago that would mention continuing to experience some pain. I believe most surgeons also mention that the general population (not just scolis) experience back pain as well, so there would be no promise in not having pain any longer.

    I myself g-r-a-d-u-a-l-l-y experienced a decline in pain, and weaned off the hard meds at 5 months, but continued with tramadol periodically after that for awhile. I am pretty good now, but have to say I still have tightness through my shoulder blades and lower back pain on occasion. I can tell when I overdo things. If I REALLY overdo it I will get sciatica. But I know that my back is stabilized and my angles won't progress. The pain isn't anything like it was before my surgery. You may still be having the pain from the surgery... I had that for about a year. I am sorry you were misled. My surgeon said there were no promises at all about any improvement in pain level. Best wishes with all you are going through.

    Rohrer-- sorry you are having a bad day.
    Last edited by Susie*Bee; 04-13-2013 at 04:43 PM.
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  10. #10
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    Jun 2009
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    Reply to all

    Quote Originally Posted by rohrer01 View Post
    Sami,
    I'm so sorry to hear this has happened to you. My doctor specifically told me that surgery would make my pain worse. I know how you feel when you said you just wanted to live a half way decent life. My scoliosis isn't one of the HUGE ones, but it is and has been very painful for most of my life. I honestly don't know what life without pain is. If a doctor promised me pain reduction, I probably would have been all about having surgery, too. Don't beat yourself up about it. I don't remember if you said where your fusion is, but there are things that they can do if they can get to your spinal cord. I was offered an intrathecal morphine pump at one time. I turned it down at the time. Now I'm on so many meds, it makes me sick to think about AND I'm still in pain. Is your pain much worse after surgery or about the same? I would definitely go and see a pain management doctor.

    Sharon,
    That syndrome you posted about sounds awful! At first I thought it was like a "fibromyalgia" type of thing, but not so. There are definite symptoms that can be pinpointed, unlike fibromyalgia which is pain of unknown origin. The treatments seem to be similar, though.

    Okay, I reread your post. You are fused T4 to L1. Depending on where your pain is, they may be able to get in above or below your fusion with the catheter if you choose to have a pain pump. For those who say scoliosis is not painful, Ppppbbbbllllaaa! There seem to be more of us with the curves in the 40 to 50 degree range or less that have very painful curves. I don't know what separates those with painful curves from those with no pain, but it is very real pain and this deformity really makes our lives living torture! Whatever the source of the pain is with the scoliosis, surgery obviously isn't always the solution. So why do surgeons even do the surgery with pain being a major criteria in adults? Arghh.

    Sorry if this post sounds odd. I'm having a VERY bad pain day. =(


    Thank you all for your responses. I did not have any pain until I turned 41 when I started to have occasional pain between my shoulders that worsened with sitting. The pain got worse gradually, but my life was still decent. At 43 I woke up one day at dawn with severe pain that felt like labor pain all over my back. The next day I was unable to sit or stand for more than a few minutes before experiencing severe pain, forcing me to start walking. The pain moved around and included my back, hips, and legs at one point or another, but I was always in pain. I tried shots, Pt, water therapy, you name for 2 years with little improvement. Whenever I sat more than 15 min my pain would go from 3 to 8 and I would have to take a 30 min walking break to calm the pain back to 3. My inability to sit and stand for any significant amount of time pushed towards suregery. Weeks 3-6 after surgery were the best then as the meds got reduced I went to the same old problems. I started to go to a pain specialist and do PT. As time passes my pain is getting worse, but after seeing 16 doctors still no answers. The stiffness in my back started a few months ago for 2 years after surgery I did not feel much stifness in my middle back, but now I do. My stifness was limited to the abs and legs. My pains move around so much and manifest themselves in so many way, it's driving me crazy. Is there anybody out there that is like me?

  11. #11
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    Oct 2008
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    Sunshine Coast, Queensland, Australia
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    Me too Rohrer. Hope tomorrow is much better for you.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  12. #12
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    Mar 2010
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    2,755
    Jennifer, you have a reason to be sore today. I didn't do anything extraordinary. I hope you feel better.

    Sami, I have pain in several different locations. If it's not in one place, then it's in another. I have pain in my spine. I have pain in my neck. I have pain between my shoulder blades. I have had constant pain in the left arm. I have pain in the lower back and down my left leg. Now, I've torn the ligament in my right shoulder, so I can add right shoulder and arm pain to the list. Sometimes it hurts to even breathe because my ribs hurt. It's like chasing the wind with my pain. When I get one area under control, it pops up in another area. It's so frustrating! It all seems to come from my back, though. Well, excluding "female" pain. My pain is so bad that I didn't even realize I had a bad gallbladder, even when I had attacks! I remember the gallbladder tenderness and waking up at night in pain, but it was so minimal compared to the rest of my pain that I never even mentioned it to my doctor. It wasn't until I was having a laparoscopy that my gynecologist said I had one angry gallbladder. It was all white and shriveled up. Needless to say, it had stones and I had to have it removed. The point of that story is to say, YES, I know what the pain is like. It's worse than gallstones. =(
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  13. #13
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    Sunshine Coast, Queensland, Australia
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    I'm aghast, Rohrer. As one who had her gallbladder removed last August due to stones, I'm not sure how you cope with such pain on a daily basis. I wish there was an easy answer for you.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  14. #14
    Join Date
    May 2009
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    Sami...
    i am in pain, but have not had surgery...
    so i can not relate to what it must be like to hurt the way you do, post surgically....especially after getting your hopes up to be at least in less pain after fusion than you were in before...
    but i need fusion to sacrum, and it is my lower lumbar that is really bad...
    i believe that is part of your spine that was NOT fused...

    have you considered seeing someone for revision surgery consult...
    like Dr Hey in Carolina...???
    perhaps he could tell you if he thinks the lack of fusion in your lower
    lumbar is contributing to your pain...or if that may have nothing to do
    with what you are going thru...?
    i was under the mis-impression that you had no pain at all before surgery....it does sounds as if you had quite a bit of pain pre surgery...
    i hope you will be able to muster the strength and hope to find another
    doctor, one who will be determined to make your life better and relieve
    at least some of your current suffering!
    16 doctors...????? SINCE you had the surgery....? or total from when you started
    consulting with scoliosis doctors...????
    have you seen Dr Hey...?? have you seen revision specialists...?????

    jess...and Sparky

  15. #15
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    Indianapolis area
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    Sami,

    Are you sure this pain is from your back? If it started pre-op, could it be something else? Fybromyalgia? Have you tried doctors that aren't in the scoli field? This may sound crazy, but even depression or low serotonin can cause unexplained physical pain. Have you tried taking antidepressants?

    I agree with the others who say surgeons should not promise pain reduction. Mine did not. However, since you already are in significant pain, maybe it makes sense to seek a revision surgery if your scoliosis is the cause of your pain.

    Dr. Lenke definitely does revision surgeries, and your curve doesn't need to be above 65 degrees or whatever the cutoff is for revisions. I think his assistant must have been confused when you spoke with her. Please call back or call Dr. Hey and get them to review your records. This is no way to live, and there are always possibilities for improvement. In the meantime, can you get yourself back on whatever meds you were taking post-op? Sounds like you need a pain management specialist for sure.

    Hang in there and don't give up!!! I believe you will eventually get the answers you need.
    Best wishes,
    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

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