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Thread: How is range of motion, quality of life affected if T11-L3 is fused?

  1. #1
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    How is range of motion, quality of life affected if T11-L3 is fused?

    I am looking for people who have had experience with fusion into the lumbar (to L3 or below).

    My 13-year-old daughter dreams of singing and dancing on Broadway. Will a fusion like this be the end of her dreams?

    Alternative practitioners tell us that if she has fusion surgery, she will live a life of pain and disability.
    Orthopedists say that if she does not have the surgery, she will live a life of pain and disability.
    It is so confusing!

    I don't think she is a candidate for tethering because she appears to be done growing.

    Thanks for sharing your experience.

    Mary

  2. #2
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    Hi Mary,

    That's a relatively short fusion. Are they talking about going anterior or posterior?

    I doubt that having a fusion (especially one that short) would hurt her ability to dance and sing at all. But your questions would be best answered by a highly-experienced scoliosis specialist orthopedic surgeon. I am so bothered that you are being told that she will live a life of pain and disability if she has surgery, especially coming from alternative practitioners (are these chiropractors?). Sure, surgery is a last resort, something every parent wants to avoid, but I believe most if not all surgeons would agree she needs surgery for a 60 degree curve.

    If this were my daughter I would stay away from the alternative practitioners. They have nothing to offer you at this point. I would focus on getting some opinions from experienced surgeons such as Newton, Skaggs, etc, then making your decisions from there.
    Last edited by leahdragonfly; 07-24-2013 at 11:13 PM. Reason: typos
    Gayle, age 49
    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)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  3. #3
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    I would just like to agree with Gayle on all her points.

    I especially agree that 5 levels is among the shortest I have seen mentioned on this forum. It sounds like they might be considering an anterior fusion based on that but of course you have to ask. The only thing I will bring up is we have a member here who is a singer and I believe her ability to sing was compromised by the anterior approach. I suggest you ask specifically if she is having an anterior approach and if it will compromise her ability to sing.
    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."

  4. #4
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    Thank you all! I really appreciate your feedback. I will definitely ask about the singing and the anterior method!

    You will NOT want to know that a woman I have known for many years told me a few days ago that she had healed her own scoliosis (serious enough that a doc wanted to put Harrington rods into her as a child) through another technique called "somatic healing," which enables a person to connect to their innermost self. Through this practice, she said she was able to de-rotate her spine. She also used it on her three kids with success.

    If I had read this story on the internet, I would deny it point blank. But I know her and trust her! I am not sure if my child and I are "evolved" enough to do this, but as a parent, I feel I must at least look into it. But all of this alternative therapy is exhausting (and expensive). We are still going to see the surgeons in S. California, and in fact, have added a third visit based on a contact's recommendation: Dr. Mundis, a very young doc who works with Dr. Ahkbarnia (sp) in La Jolla/Scripps.

  5. #5
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    Quote Originally Posted by laakea77 View Post
    You will NOT want to know that a woman I have known for many years told me a few days ago that she had healed her own scoliosis (serious enough that a doc wanted to put Harrington rods into her as a child) through another technique called "somatic healing," which enables a person to connect to their innermost self. Through this practice, she said she was able to de-rotate her spine. She also used it on her three kids with success.
    How does she know she de-rotated her spine? I notice she isn't claiming she reduced her curve so you might want to consider that. Simply having a curve over the years seems to damage the spine, something folks who like to mention adjacent level disease often (conveniently?) forget to mention.

    Also, I assume she has before and after radiographs proving this claim of de-rotation, yes? If not then there is no reason to believe it and every reason not to believe her.
    Last edited by Pooka1; 07-24-2013 at 09:37 PM.
    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."

  6. #6
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    I think that seeing Dr Mundis is a great idea as a next step. Go ahead and talk to him and see what he thinks. If you can get x-rays burned to disc that would be a great idea.......Having these dated digital records will come in extremely handy in the future, and will help other scoliosis surgeons in the future. A full x-ray should be shot of the whole spine. From the lower neck to the pelvis, from the coronal (front) and sagittal (side) plane.

    https://en.wikipedia.org/wiki/Sagittal_plane

    I know that you donít what to do with all of this, it can be confusing for someone, a patient or a parent to try to absorb all of this scoliosis stuff! Technical medical words are not the easiest things to absorb and remember! Itís a handful.....Try to relax and breathe. One step at a time.

    There is also quite a bit of wisdom on this forum..... Its hard for me to add when Gayle and Sharonís posts are right on the mark as we sit around this table discussing scoliosis. (smiley face)

    Your decisions on your daughters spine depend on your scoliosis education. Having a 60 degree curve is certainly not a curve that you can ignore since she is a surgical candidate. You will be told this. I waited till I was 49, did the alternatives, and maintained for many decades but my case and situation was different in a few ways. ďIfĒ you decide that you donít want to do surgery, she will need to be monitored with x-rays. Ask Dr Mundis about what frequency he would recommend. X-rays are the only way to monitor spinal shape.

    I think you are on the right path.....I like the forum, attending scoliosis meetings to talk to other surgeons and patients, and getting multiple opinions.

    My scoliosis surgeon went to 19 years of schooling, residency and fellowship. Orthopedic surgeons are top of the class in any medical school, scoliosis residency slots at UCSF, or HSS, or TCSC are extremely tight slots and only accept the best of the best medical students in the country. Hope I didnít make you nervous but just something to consider. (smiley face) MDís that want and easier route DO NOT become scoliosis surgeons, they become psychologists. (This is a med school joke BTW)

    Have you read Dave Wolperts book on scoliosis? This would be a good one to read....and can buy it here from NSF.

    I also want to remind you that you can PM anyone here, exchange phone #ís to chat if you wish.

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  7. #7
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    Thanks, Sharon and Ed,
    I so appreciate your feedback! It makes me not feel so alone.

    Sharon: we are going today to meet with the woman who said she healed her spine. Leave no stone unturned--right? We will listen with open minds.

    Ed, yes, I did read Mr. Wolpert's book. It was excellent! I sure wish he would update it.

    I made the appointment with Dr. Mundis, and today prepared all of the medical records to send to his office.

    Another mom emailed me and said that there may be a doctor in Vermont--Dr. John T. Braun--who's been tethering adults. I'm calling there next week. Keep hoping that technology will provide alternatives to fusion soon.

    thankfully,
    Mary

  8. #8
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    Quote Originally Posted by laakea77 View Post
    Sharon: we are going today to meet with the woman who said she healed her spine. Leave no stone unturned--right? We will listen with open minds.
    Hi Mary,

    Here's what I would do if I was meeting her:

    1. Make sure she has proof of her claims in the form of before and after radiographs.
    2. Ask what she does to maintain any correction.
    3. Ask is she is claiming ONLY de-rotation as opposed to decrease in the lateral curve.

    Could you please report back what she says?
    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."

  9. #9
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    Hi Sharon,
    I didn't see your questions til after we got back from the visit.
    She doesn't have any xrays--she's just a mom who had a big S curve and spent her whole life in pain. She was supposed to have Harrington rods but her family couldn't afford them...

    I saw her spine, and it looked perfect. She caught her children's curves early and so there are no xrays of their scoliosis, either.

    Yes, she showed me her maintenance exercise--very easy--takes a few minutes per day.

    And--I do not know if she had only rotation, or a curve. But I will ask her.

    All I can say is: if I read this story on a message board, with this little proof, I would not even pause to consider it. But since I know her and her family, I will continue sleuthing if we have time, and will report back.

    Thanks as always for your insightful questions and input.
    Mary

  10. #10
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    Hi there,

    I have read over this post several times and would love to believe it. I am not trying to change your opinion on anything. But.....if it sounds too good to be true it probably is.

    I would dearly love to have my children do a few minutes of easy exercise per day and cure their scoliosis. Who wouldn't? Will you describe the exercises she showed you. I was wondering though, if their scoliosis was caught so early that they never had x-rays, how did she know they had scoliosis? Can you cure something that didn't exist?

    Please continue to seek appropriate, expert medical care for your daughter. She has a very large curve. You need all the expert opinions you can get then decide which expert offers the best options and answers for your daughter's situation and future health.
    Gayle, age 49
    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)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  11. #11
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    Hi Gayle,
    Thanks for your response and concern. We leave next week to see three orthopedic surgeons in CA--(Skaggs, Newton, Mundis).
    If they say we have time to explore this, then we will.
    Just wanted you to know that I am not giving up seeking medical help for my child.
    BUT: if there is a chance this can help, I will look into it.

    After we have met with the healer, and if her practice helps, I will describe what we learned.

    Mary

  12. #12
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    Quote Originally Posted by laakea77 View Post
    Thanks for your response and concern. We leave next week to see three orthopedic surgeons in CA--(Skaggs, Newton, Mundis).
    I think you are covered!

    I just had a few questions that would help other patients if they knew the answer. But please don't feel like you have to answer.

    Do you plan on mentioning the woman to the surgeons? If you do, can you please report back what they said?

    Can you describe the exercises she did to cure her curve?
    When she started, how much time did she spend each day and how long did it take to fix her curve?
    How old was she when she started and how did she figure this stuff out on her own?

    Can you describe the maintenance exercises she does now?

    It might be possible she had a hysterical scoliosis. We have seen a case like that on the group. It is large but not structural and has no rotation so it can go away with no real treatment. When the woman said she de-rotated her spine, it's possible it was never rotated to begin with. That's the best rational explanation I can come up with to explain this situation. Alternatively, she may have had only a small curve that resolved on its own and she is misremembering whether she was actually surgical or whether the surgeons told her if it progressed she would need surgery and her parents determined they couldn't afford it if it did progress. There is no end to the misunderstandings when a patient and her parents are confronted with something like this. Also, a fair percentage of smaller curves never progress and some even resolve on their own.

    Is your daughter doing the exercises?

    Thanks.
    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."

  13. #13
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    I think I have it...

    Was she diagnosed by an orthopedic surgeon or an alternative treatment provider?

    Did an orthopedic surgeon ever confirm a large scoliosis? Does she have any evidence in the form of radiographs?
    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."

  14. #14
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    Hi! Everyone wants to avoid surgery. If there are exercises that can decrease painAND decrease the scoliosis curve, sounds great. I would be hesitant to spend money and time seeing an alternative practitioner who did not have ant evidence based research to back claims of curve/pain reduction.

    I would ask the spine specialist MDs about the risk if your daughter waits to have surgery. If there is no risk and she's not in a lot of pain, then exercises might be the way to go for a while to see if it helps. I would be hesitant to have my children invest their time and energy in an unproven treatment that could cause harm or even be a waste of time.

    Being a parent is hard wrk, huh?

    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  15. #15
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    seriously....somatic healing...
    seriously...??

    i am sorry...my own opinion....is not printable in polite company...
    i do not believe in hocus pocus "cures"
    there is NO such thing...

    not evolved enough...?
    that is just a way of people trying to be superior to others...
    no one is THAT evolved, to change the way a bone is...
    if it were do-able, it could be REPLICATED...

    did she claim it was a miracle...??

    of course she does not have X rays...

    sorry if i sound blunt...but i do not like when some make others feel
    they are not evolved enough!!!

    jess...and Sparky (the wonder dog)

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