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  1. #1
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    Sep 2016
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    Dr's appointment today.

    Today I met with two different surgeons in NYC about my scoliosis. I do have an atypical curve with daily pain in my lower back and into my rt buttock area and thigh. It is getting worse.

    Dr. Lenke suggested fusion from T10- L3, although he was concerned with L4 disk and wants to get a catscan of this area as the disk above and below it look great, he said he was shocked that my disc look liked that because he just didn't expect it. He did say that this would help me but I'd probably need more surgery under the fusion with signs of degeneration in L4 but could maybe do minimly invasive on that disc with an associate of his. He measured my curve to be 56. The local orthopedic Dr said it was only 41 about a month ago. Dr Lenke wants to get an MRI of my cervical and thiracic area also.

    Dr Lonner was my second appt. and after Lenke my heart was already saying, I need to fix this and fusion is the best way if that's what Lenke said. Dr Lonner thinks I'd be a candidate for VBT and said he'd tether t11- l3. I did not get bending xrays done yet so will have to do that as he needs me to be flexible. And also a dexascan done. He feels he could preserve those discs with tethering.

    My head is full of information and I have to figure all this out and of course am overwhelmed and scared. Fri everything I've read, both are great surgeons and have offered to help me. I had no idea my curve was that size and now I think it will just keep growing and causing me more pain. I'm terrible at making big decisions. Everyone here has been so great with support and acceptance.
    Melisse
    Age: 42: with 42* Lumbar, 32* Thoracic.
    Diagnosed with Adolescent Scoliosis @ 12 y.o. Thoracolumbar curve was around 28*
    Wore Boston Brace 2 -3 yrs

  2. #2
    Join Date
    May 2008
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    Melisse

    I am surprised you got in to see Dr Lenke....and it would be interesting to get Dr Lenke’s thoughts on tethering.....T10-L3 is a short fusion.

    T11-L3 is also short.... Did Dr Lonner say how “low” he could tether? Was this brought up?

    You don’t have to make a decision right away......

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  3. #3
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    Jan 2008
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    Although tethering is new in general and especially new in mature adults (the Facebook tethering group only reports one that they know of), there is almost no downside to tethering instead of a fusion, especially for lumbar. The only potential downside is another operation to fuse if it doesn't stabilize your spine and remove your nerve pain. Most of the few hundred patients so far are growing kids.

    If you want access to information from a patient and parent lead group on tethering, you can ask to join this group...

    https://www.facebook.com/groups/ScoliosisTethering/

    There is another FB group called "Vertebral Body Tethering" or something like that that is run by chiros. They have no expertise and shouldn't be dealing with scoliosis.
    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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    Sep 2016
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    Dr Lenke really thought my case would be fairly easy until he saw my MRI. He said L4 and L5 did not look right and it could make things complicated with his suggested fusion. It's not settled yet I guess and up in the air. I think because I have a severe rt lumbar curve with pain is why I should fix it now. He of course is wanting a full MRI and bone scan also so his plan could change on me.

    I only had a short visit with Dr Lonner and I'm just not sure if I should even think about VBT with having atypical curves and daily pain. He said I could call him to discuss more with any questions I have on it but he thinks it could work on me. I didn't ask how low he could go either.

    Either way, screws and surgery sound like my future, and I'm not ready for that!
    Melisse
    Age: 42: with 42* Lumbar, 32* Thoracic.
    Diagnosed with Adolescent Scoliosis @ 12 y.o. Thoracolumbar curve was around 28*
    Wore Boston Brace 2 -3 yrs

  5. #5
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    Jan 2008
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    Quote Originally Posted by Kay1974 View Post
    Dr Lenke really thought my case would be fairly easy until he saw my MRI. He said L4 and L5 did not look right and it could make things complicated with his suggested fusion. It's not settled yet I guess and up in the air. I think because I have a severe rt lumbar curve with pain is why I should fix it now. He of course is wanting a full MRI and bone scan also so his plan could change on me.

    I only had a short visit with Dr Lonner and I'm just not sure if I should even think about VBT with having atypical curves and daily pain. He said I could call him to discuss more with any questions I have on it but he thinks it could work on me. I didn't ask how low he could go either.

    Either way, screws and surgery sound like my future, and I'm not ready for that!
    It will be interesting to see what Lonner says on the issue of resolving pain with tethering. I can't imagine he has any evidence at all to speak to the issue. There is ONE mature patient who has been tethered as far as anyone knows. He will necessarily be using the information from the growing kids which may not be relevant. The FB group will have no information on this unless the one mature patient had a curve like yours with pain. And even then that is just one patient.

    I think your case may indicate that disc damage can be expected below a curve whether or not it is fused. This point is missing completely by folks. Fusion is about cutting your loses. Normal is off the table. That is the lesson I have learned from my twin daughters being fused as teenagers. They are in college now and we never talk about scoliosis. They have moved on into active lives.

    I wish you 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."

  6. #6
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    Sep 2016
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    83
    Quote Originally Posted by Pooka1 View Post
    It will be interesting to see what Lonner says on the issue of resolving pain with tethering. I can't imagine he has any evidence at all to speak to the issue. There is ONE mature patient who has been tethered as far as anyone knows. He will necessarily be using the information from the growing kids which may not be relevant. The FB group will have no information on this unless the one mature patient had a curve like yours with pain. And even then that is just one patient.

    He did mention as I was leaving that I should get try injections to see if that fixes or solves the pain in my rt. side butt, thigh area. Either Dr. did not say that this would completely fix my pain but that it should take the stress off and it have a better chance as I get older to have a better quality of life.

    I think your case may indicate that disc damage can be expected below a curve whether or not it is fused. This point is missing completely by folks. Fusion is about cutting your loses. Normal is off the table. That is the lesson I have learned from my twin daughters being fused as teenagers. They are in college now and we never talk about scoliosis. They have moved on into active lives.

    I wish you luck.
    Yes, I agree Sharon with the Lumbar comment. There is no guarantee what happens below it either way I go for treatment. There have been older teen cases of the Lumbar tethering being successful and that is promising to me. I think their ages were 16 and up to 21. I will have pain to some degree and that just reality. I am a member of that tethering group you mentioned and have spoke some to a few members, great group also like this one. Its not the chiro site either, that's not what I'm interested in at all for myself.
    Melisse
    Age: 42: with 42* Lumbar, 32* Thoracic.
    Diagnosed with Adolescent Scoliosis @ 12 y.o. Thoracolumbar curve was around 28*
    Wore Boston Brace 2 -3 yrs

  7. #7
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    Quote Originally Posted by Pooka1 View Post
    there is almost no downside to tethering instead of a fusion, especially for lumbar. The only potential downside is another operation to fuse if it doesn't stabilize your spine and remove your nerve pain.
    Sorry, gotta disagree here. I don't want to rain on anyone's parade, but it takes 10+ years to find out what most of the potential complications are for new implant technology. With that said, the current technology of fusion with segmental hardware has a very high complication rate in adults, so that's no walk in the park either. However, I always worry that any new treatment might have a complication that cannot be fixed, which could be a disaster for young adults. No one should rush into any new treatment without truly considering what they might be signing up for.

    --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

  8. #8
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    Quote Originally Posted by LindaRacine View Post
    Sorry, gotta disagree here. I don't want to rain on anyone's parade, but it takes 10+ years to find out what most of the potential complications are for new implant technology. With that said, the current technology of fusion with segmental hardware has a very high complication rate in adults, so that's no walk in the park either. However, I always worry that any new treatment might have a complication that cannot be fixed, which could be a disaster for young adults. No one should rush into any new treatment without truly considering what they might be signing up for.

    --Linda
    Well, I don't disagree but will point out that even the flatback issues with the Harrington rods that extend below the thorax are generally salvageable as far as I know. Maybe there is something worse that tethering can trigger but I don't know what that might be.

    Speaking of the sagittal plane, if you need metals rods that are bent by tools to restore normal kyphosis and lordosis, I am not understanding how a tether could do anything but hypokyphose the thorax and cause flatback in the lumbar. That tether has to be damn tight to pull the curve out in the coronal plane. If it's that tight how can it allow curves in any other plane? I am sure I am missing something. If there is a long-term problem with tethering, my guess it will be the inability to address the sagittal plane.
    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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    I looked at some radiographs of tethered patients. It seems like they only do short segments, generally shorter than most fusions I have heard about. In that case maybe they won't hypokyphose the thorax or flatten the lumbar enough to cause a problem. If so, then the people who will benefit will be people who can get by with a shorter fusion it seems. I am just spitting in the wind here obviously.

    How long did it take to start seeing flatback with the Harrington rods? Maybe it is still too early to see that with tethering.

    I found a paper where they did a posterior tether on a sheep model for kyphosis. But all these tethers they are doing now are anterior as far as I know.
    Last edited by Pooka1; 02-23-2017 at 10:40 AM.
    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."

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