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Thread: Calling All Fully Fused

  1. #1
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    Calling All Fully Fused

    Hi all, I am currently fused T2-T12 and I am potentially needing to have T12-S1 fused with pelvic fixation. At only 28, almost 29, and with a toddler and an infant at home I am worried about loss of flexibility and/or mobility. Can anyone attest to either one of these? What age did you have your surgery? Do you regret it?
    Feb 2003 - Diagnosed C (35) T (45) L (25)
    Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
    Oct 2019 - Lumbar curve progressed to 40
    Nov 2019 - Thoracic curve progressed to 31
    ??? 2020 - T10-S1 Fusion with SI fixation

  2. #2
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    Quote Originally Posted by JScoli91 View Post
    Hi all, I am currently fused T2-T12 and I am potentially needing to have T12-S1 fused with pelvic fixation. At only 28, almost 29, and with a toddler and an infant at home I am worried about loss of flexibility and/or mobility. Can anyone attest to either one of these? What age did you have your surgery? Do you regret it?
    Just a heads up that it's very unlikely that you'll find anyone as young as yourself who has been fused T1 or T2 to S-1 (or S-2). It's rare for anyone your age to need it, and even if you find a few like that, I'm guessing most surgeons would be very reluctant to perform such a long fusion on someone so young.

    With all the thousands of scoliosis patients I've met or communicated with over the years, I honestly cannot remember anyone so young having it done.

    --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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    Any idea what the average age is? If itís really rare for someone as young as myself to have it done then maybe I should suck up the pain and discomfort for now and put it off? All just so confusing. I would hope my surgeon wouldnít present it as an option if he didnít feel it was appropriate or not for my best well being.
    Feb 2003 - Diagnosed C (35) T (45) L (25)
    Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
    Oct 2019 - Lumbar curve progressed to 40
    Nov 2019 - Thoracic curve progressed to 31
    ??? 2020 - T10-S1 Fusion with SI fixation

  4. #4
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    Quote Originally Posted by JScoli91 View Post
    Any idea what the average age is? If it’s really rare for someone as young as myself to have it done then maybe I should suck up the pain and discomfort for now and put it off? All just so confusing. I would hope my surgeon wouldn’t present it as an option if he didn’t feel it was appropriate or not for my best well being.
    I think it is really important that you do not assume you are not handling the pain as well as others. It could be you are having more pain. There is an age range as Linda mentioned and someone has to be the youngest who has to have this fusion due to pain. Not saying you are the person but someone has to be.

    I do think it would help if Linda knows why people your age have not had their lumbar fused to treat pain. It may be they spend decades trying every conservative treatment like Ed. It may be you are unusual in the amount of pain. I googled fractional curve because I had never heard of it before Linda mentioned it. There is plenty on that topic and it can cause a lot of pain. It may be people your age generally don't have a fractional curve. Who knows.

    I still think that if your surgeon thinks that just fusing the one level of the fractional curve can ease your pain enough to put off fusing the rest of the lumbar then it is not crazy to ask one of the tethering surgeons if you can have that one level fusion and tether the rest of your lumbar.

    If you are that unusual in possibly needing a full fusion at 28 then maybe you are also a candidate for tethering. Who knows.
    Last edited by Pooka1; 12-25-2019 at 11:25 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."

  5. #5
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    Quote Originally Posted by JScoli91 View Post
    Any idea what the average age is? If itís really rare for someone as young as myself to have it done then maybe I should suck up the pain and discomfort for now and put it off? All just so confusing. I would hope my surgeon wouldnít present it as an option if he didnít feel it was appropriate or not for my best well being.
    The research I looked at all appears to indicate that the average age for patients having long fusion to the sacrum is about 55-60 years old. Here's an example study: https://www.ncbi.nlm.nih.gov/pubmed/18520944

    Just because you're well below the average age, it doesn't mean your pain and disability is not real. There are always a few outliers in any cohort. You may have some underlying genetic factor that no one knows about. Why it's occurring is really unimportant. Just file it under "sometime shit happens".

    I sent an email to a handful of deformity surgeons about your case. Hope you don't mind. I've received responses from the two who always take the time to respond to me. I'll send them to you via PM. If you need more info, send me a PM with your email, as that's a much easier method of communicating.

    --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

  6. #6
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    Quote Originally Posted by Pooka1 View Post
    I think it is really important that you do not assume you are not handling the pain as well as others. It could be you are having more pain. There is an age range as Linda mentioned and someone has to be the youngest who has to have this fusion due to pain. Not saying you are the person but someone has to be.

    I do think it would help if Linda knows why people your age have not had their lumbar fused to treat pain. It may be they spend decades trying every conservative treatment like Ed. It may be you are unusual in the amount of pain. I googled fractional curve because I had never heard of it before Linda mentioned it. There is plenty on that topic and it can cause a lot of pain. It may be people your age generally don't have a fractional curve. Who knows.

    I still think that if your surgeon thinks that just fusing the one level of the fractional curve can ease your pain enough to put off fusing the rest of the lumbar then it is not crazy to ask one of the tethering surgeons if you can have that one level fusion and tether the rest of your lumbar.

    If you are that unusual in possibly needing a full fusion at 28 then maybe you are also a candidate for tethering. Who knows.
    I think fractional curves are often, but not always, a component of degenerative scoliosis.

    What is it with you and tethering? One would think you have stock in Zimmer Biomet. ;-) I'm not part of the Facebook group, but I'm guessing there are relatively few "adults" who have had tethers placed, and that there's little to nothing known about what will happen over time. And, for the record, I'm fairly certain a tether can't physically be placed at L5 or S1.

    --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

  7. #7
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    Quote Originally Posted by LindaRacine View Post
    What is it with you and tethering? One would think you have stock in Zimmer Biomet. ;-) I'm not part of the Facebook group, but I'm guessing there are relatively few "adults" who have had tethers placed, and that there's little to nothing known about what will happen over time. And, for the record, I'm fairly certain a tether can't physically be placed at L5 or S1.

    --Linda
    I don't have stock but you are giving me an idea! I like how Lonner sat on the sidelines for 5 years before jumping in. Something made him jump in and I hope it wasn't just the sheer interest/volume/(profit). Newton is turning away 80% of all comers for tethering so that is hopefully going to drive up the success rate.

    I am rooting for tethering as a great hope for my daughter and others who might need lumbar fusion in the future. You are right that it is in its infancy of study in kids and is almost primordial in adults.

    I am not a total fan for tethering in adolescents which is the main purpose at present given what I am reading about how it doesn't achieve the same straightness in the (unfused) lumbar as a T fusion would. At this point I would chose T fusion over T tethering for my kid if the surgeon told me the fusion would likely save the lumbar and the tethering probably would not. Who wouldn't?

    I think if JScoli91 was a candidate for tethering it would be along with fusing L5-S1, not in place of that fusion because her surgeon said she needs that level fused.
    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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    Quote Originally Posted by Pooka1 View Post
    I don't have stock but you are giving me an idea! I like how Lonner sat on the sidelines for 5 years before jumping in. Something made him jump in and I hope it wasn't just the sheer interest/volume/(profit). Newton is turning away 80% of all comers for tethering so that is hopefully going to drive up the success rate.

    I am rooting for tethering as a great hope for my daughter and others who might need lumbar fusion in the future. You are right that it is in its infancy of study in kids and is almost primordial in adults.

    I am not a total fan for tethering in adolescents which is the main purpose at present given what I am reading about how it doesn't achieve the same straightness in the (unfused) lumbar as a T fusion would. At this point I would chose T fusion over T tethering for my kid if the surgeon told me the fusion would likely save the lumbar and the tethering probably would not. Who wouldn't?

    I think if JScoli91 was a candidate for tethering it would be along with fusing L5-S1, not in place of that fusion because her surgeon said she needs that level fused.
    Our doc became a tethering fan because he hated fusing kids down to L4. He has said he just doesn't care about the top curve because he can fix that. The bottom one is the one that he's trying to manage.

    (But my understanding is that Linda is correct and no one has been tethered below L4, and even L4 is uncommon -- ABC will do it, and Lonner will do it reluctantly, but other than that, most docs won't.)

  9. #9
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    Quote Originally Posted by Concerneddad View Post
    (But my understanding is that Linda is correct and no one has been tethered below L4, and even L4 is uncommon -- ABC will do it, and Lonner will do it reluctantly, but other than that, most docs won't.)
    Why the reluctance to tether the entire lumbar among other surgeons??

    A reluctance to fuse past L3 (or at all) in kids is understandably but I didn't realize the same concern applied to tethering.
    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."

  10. #10
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    Quote Originally Posted by Pooka1 View Post
    Why the reluctance to tether the entire lumbar among other surgeons??

    A reluctance to fuse past L3 (or at all) in kids is understandably but I didn't realize the same concern applied to tethering.
    I think it's an access thing. They have to go through the psoas muscle, which is tricky and can complicate recovery. I've also heard that going down to L4 can result in more noticeable mobility limitations, but that is more anecdotal since relatively few have been tethered that low. Again, though, my understanding is that ABC has no problem doing it, and Lonner will do it if necessary.

  11. #11
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    Quote Originally Posted by Concerneddad View Post
    I think it's an access thing. They have to go through the psoas muscle, which is tricky and can complicate recovery. I've also heard that going down to L4 can result in more noticeable mobility limitations, but that is more anecdotal since relatively few have been tethered that low. Again, though, my understanding is that ABC has no problem doing it, and Lonner will do it if necessary.
    Okay I see that. Yes tethering does decrease ROM, even more so than stapling in some planes per one study in non-human but it still has to be more than a fusion which is what she is looking at. But it sounds like L4-L5 will likely remain uninstrumented even if she gets tethered along with the L5-S1 fusion and that may toast that disc in a New York minute. Who knows. I just think in light of Linda's comments about the incidence of full fusion in young adults that they may need to plow some new ground here.
    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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