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Thread: How do you make the decision on whether or not to have surgery?

  1. #1
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    How do you make the decision on whether or not to have surgery?

    I am new to the forum and to the whole scoliosis scene. I am 65 and was diagnosed 9 months ago when I had physical therapy for back pain for a year and wasn't getting better. I finally asked for an xray and much to my surprise have a 36 degree thoracic/lumbar curve. I was getting no where with the MD/ortho that I was seeing locally, so I self referred myself to the Spine Center at Oregon Health and Sciences University [about an hour away] and found a great team of surgeon, pain specialists, psychologists, physical therapists....a really supportive team. I have pain, starting about an hour after I wake up that progresses depending on my activities of the day. If I am active, then I am easily an "8-9" in the evening even if I am using the IF setting of my TENS unit and Lidocaine patches. The Pain Specialist MD is going to do a Medial Branch Block and then a Denervation if that is successful. That supposedly takes care of arthritis pain?

    How does an individual decide to have the surgery? How much pain should you be in to have the surgery? Whenever I do decide to have surgery, I plan to get a second opinion. I am taking pain pills now and pain management classes.

    Thanks.

  2. #2
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    Hi Susan,

    I'm sending you a PM. I live in Oregon also and been followed by Dr Hart at OHSU for about three years. Although I have had some bumps in the road to recovery, I am very pleased with Dr Hart and have found him to be very responsive and willing to answer all questions. He also has a great staff.

    If you do a search for "Hart" you will find several other people here who have had surgery with him. You can also ask for the names of several patients who had similar surgeries as what is being proposed for you, and talk to them by phone. I talked to three patients this way and found it to be very informative. My situation was different from yours, but I am also happy to talk with you by phone if you would find that helpful.

    Best of luck,
    Last edited by leahdragonfly; 04-18-2012 at 10:02 AM.
    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

  3. #3
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    Lilburn, GA
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    Surgery

    If I had a curve like yours I would do everything in my power to avoid surgery. My curve was 60+ and progressing which gave me little choice.
    Good luck!
    Marina
    50 years old!!!!!
    Wore Milwaulkee Brace 1976-77
    Original curve 36 degrees ( measured in the 70s)
    Advanced to 61 degrees 01/2011
    Surgery 07/11/2011
    Fused T1-L2 (curve now in the 20s!)

  4. #4
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    i would be surprised if you find a surgeon who will operate on a curve of 36 degrees...
    surgeons have always said the curve must be at least 45 degrees, some say 50 degrees...
    i agree that non surgical tx would be the way to go....

    best of luck....
    jess

  5. #5
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    NJ
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    Lightbulb Surgery for 36 deg curve?

    Even though your curve appears below scoliosis surgical threshhold pain levels like 9 are too high. Perhaps there is an associated spinal abnormality, like spondylolisthesis, which is correctable by itself using a spinal fusion. A thorough investigation is in order. Malformed vertebrae are also a possibility.
    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
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    Do you have a trunk shift? I posted a case from a surgeon's blog about someone with a smallish curve but lots of pain due to the associated trunk shift. He still didn't offer her surgery but there may be some PT to address the trunk shift. I have no idea.

    Good luck.
    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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    Here is that thread I started. Does this seem to fit your situation also?

    http://www.scoliosis.org/forum/showt...-be-so-painful

    The other thing is if nothing else is found, unless the surgeon thinks fusion is likely to ease your pain, I agree with the folks who say it might be hard finding a reputable person to do it.
    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."

  8. #8
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    Northern California
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    Hi....

    I think, in the last 5-10 years, surgeons have stopped focusing on curve magnitude in adults, as it's not an adequate predictor of the need for surgery. This week, we had back to back patients who demonstrate why this has happened. The first patient had about a 70 degree thoracic curve with a smaller lumbar curve. While she has some pain, it's not significant, and she is very motivated to stay out of the OR. She is doing regular daily exercise. The very next patient was a women with ~25-30 degree S curves. She says she has extreme pain every day. She'd sign up for surgery today if the surgeon was willing to do it. (He sent her off for 6-8 weeks of PT.)

    In terms of determining when it's time, I think it's a process. Generally, people start reducing their function. For example, if you have pain when you stand, you stop doing things like cocktail parties and museums. Then, when the pain gets so bad that you have to significantly reduce the things that are more important (work, taking care of your family and yourself), people generally make the decision to have surgery. In my own case, it was really obvious to me when it was time for surgery. I had back pain prior to my surgeries last year, for about 15 years. Although it definitely had a negative affect on my life, I could still function fairly well. But, when leg pain made it difficult to do my job, and after having several rounds of PT and injections, I knew it was time.

    Best of luck with your decision.

    Regards,
    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

  9. #9
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    May 2009
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    i thought curve progression is supposed to be an important indicator as to the need for surgery....
    to stop the progression from getting worse....that is what i have heard from every surgeon, and
    from every pain management doctor...the pain management docs were ALL against having scoliosis
    surgery for any other reason....
    and...supposedly, surgery is NOT a guarantee of being pain free, or of even reducing pain levels,
    after healing...
    i thought progression of curves is an indicator that the spine is getting worse, even collapsing
    in some cases....

    ???

    jess

  10. #10
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    Feb 2011
    Location
    Lilburn, GA
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    Progression

    Quote Originally Posted by jrnyc View Post
    i thought curve progression is supposed to be an important indicator as to the need for surgery....
    to stop the progression from getting worse....that is what i have heard from every surgeon, and
    from every pain management doctor...the pain management docs were ALL against having scoliosis
    surgery for any other reason....
    and...supposedly, surgery is NOT a guarantee of being pain free, or of even reducing pain levels,
    after healing...
    i thought progression of curves is an indicator that the spine is getting worse, even collapsing
    in some cases....

    ???

    jess
    I'm with you, Jess. I thought the same thing and you are right that the surgery doesn't guarantee decreased pain. I went from 30 curve to a 61 curve in 15 years. I didn't have much pain.
    50 years old!!!!!
    Wore Milwaulkee Brace 1976-77
    Original curve 36 degrees ( measured in the 70s)
    Advanced to 61 degrees 01/2011
    Surgery 07/11/2011
    Fused T1-L2 (curve now in the 20s!)

  11. #11
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    Sep 2003
    Location
    Northern California
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    6,949
    I was talking specifically about the issue of a single curve measurement as being unimportant. Progression is definitely one of the variables that a good specialist will look at, but it's just not applicable to this discussion.
    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

  12. #12
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    I'm with Karen Ocker on this one. You need a really thorough investigation of what's going on. I would be surprised if 36 degree curve alone would cause that much pain. Find one of the VERY BEST doctors to check you out. I'm sure Linda can recommend someone in your area. Good luck! I'm sorry you're in so much pain.

    Best,
    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.

  13. #13
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    Jan 2012
    Location
    Yacolt, WA
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    Quote Originally Posted by leahdragonfly View Post
    Hi Susan,

    I'm sending you a PM. I live in Oregon also and been followed by Dr Hart at OHSU for about three years. Although I have had some bumps in the road to recovery, I am very pleased with Dr Hart and have found him to be very responsive and willing to answer all questions. He also has a great staff.

    If you do a search for "Hart" you will find several other people here who have had surgery with him. You can also ask for the names of several patients who had similar surgeries as what is being proposed for you, and talk to them by phone. I talked to three patients this way and found it to be very informative. My situation was different from yours, but I am also happy to talk with you by phone if you would find that helpful.

    Best of luck,
    Thanks Gayle. I don't know what a "PM" is???? I do like Dr. Hart. I see him again next week. When I saw him 3 month ago, I was in severe pain. He saw me and described the surgery and then asked me to bring my husband back the next week and we reviewed everything again. My surgery would involve T3 to S1, if we decide that is what we want to do. I see Dr. Sibell for conservative treatment. He did volunteer to give me names of people that had surgery similar to mine, so maybe that is what he will do next week. I don't have any idea how and if mine will progress. My first xray was in Aug 2011 and that one showed a 33 degree curve [boy was I surprised!, that was my initial diagnosis] and then the Jan 2012 xrays showed a 36 degree....the change might be different machines or unknown varience, not a change in the curve. The fall xray of 2012 will be helpful to give more info on progression. I am glad that I found a supportive local person like you. Susan

  14. #14
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    Jan 2010
    Location
    Syracuse, NY, USA
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    Susan,

    My primary motivations that pushed me towards having the surgery were:

    (1) I developed neurogenic claudication (due to lumbar stenosis), which made it very difficult to stand and very difficult to walk. This was somewhere during the January to March timeframe in 2009; I had had warning symptoms as early as June/July 2008, but during the winter months in 2009, it became so painful that lifting my left leg high enough to move my left foot forward one step was excruciating. It improved after I started parking closer to my downtown job, but eventually it got to the point that I could never complete my list of things to do during a given week because it was just too painful to walk far enough to do what I needed to do.

    (2) My lumbar curve progressed from about 25 degrees in July 2007 to about 42 degrees by September 2012; I assumed it would just keep getting worse and worse, and the surgeon also told me that my spine was collapsing. I knew that surgery would get more difficult and complex the longer I waited, so I decided to go ahead and get it over with.

    Before my leg problem started, I was able to control the pain via exercise and NSAIDs for the most part. But I had to stop all of my exercise classes once the neurogenic claudication set in, because exercise just made it worse.

    -- Mary

  15. #15
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    Quote Originally Posted by Marina63 View Post
    If I had a curve like yours I would do everything in my power to avoid surgery. My curve was 60+ and progressing which gave me little choice.
    Good luck!
    Marina
    I plan to keep going to physical therapy and try to figure out how to control the pain. The evenings are tough, but I'm optimistic that maybe things will get better. Yes, surgery is a very big decision. Mine would be from T3 to S1 if I have it. Best of luck to you.

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