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  1. #46
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    Quote Originally Posted by JScoli91 View Post
    Linda, blaine you say? We live in Sunnyside WA sandwiched right in the middle between yakima and tri-cities in eastern WA. I am probably having my second opinion at UW Spine Clinic with Dr. Bransford soon, are you close enough that we might be able to meet up? I have met only a couple fellow scoliosis brothers and sisters so far and would be interested in meeting another.
    Unfortunately, I'm about 100 miles from there. If I'm available on the day/time of your appointment, it's in the middle of the day, and there's little to no snow, I'd be willing to make the drive.

    --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

  2. #47
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    Quote Originally Posted by titaniumed View Post
    The hook only construct is interesting. You must have been small.
    C-D implants involved only hooks. That's what I have from my original surgery.
    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. #48
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    Quote Originally Posted by JScoli91 View Post
    I was told that pregnancy can increase curves, is there any merit to that?
    The research says that pregnancy has no effect on scoliosis, but I've heard it from enough women that I have my doubts. It's possible that it's a soft tissue issue.

    Quote Originally Posted by JScoli91 View Post
    Anyway, so far the surgeon I have talked to locally in my area has been very up front with the risks and potential challenges, etc. He wanted me to have a second opinion to ease my mind, it wasn’t me wanting a second opinion to double check him. I think that speaks to a surgeons merit and character when he can put his personal pride and ego aside thats attached to his opinion and be willing to welcome in the voice of another surgical colleague, don’t you think? If I were to do either surgery locally instead of in Seattle at UW I don’t have a lack of confidence in my surgeon but rather the rural area that we live in and the hospital it would be at and the resources that it has. Is that grounded in a solid concern or makes sense?
    Your concern about having a big spine surgery in a rural hospital is valid. When I worked at UCSF, at least half of our revision cases came from outside the SF Bay Area.

    While I think your surgeon sounds like s/he knows what they're doing, I think it's a good idea to get a second opinion. (I think this is true in almost all cases.) I think the best tools we have for choosing the best surgeons are 1) referrals from other patients who have had similar surgeries and 2) checking out each surgeon's training. Whenever possible, I recommend choosing a surgeon who is fellowship trained, preferrably with surgeons who are known to be the best. Training centers known to produce great surgeons include Hospital for Special Surgery (NY), Columbia (NY), Washington University (St. Louis), and UCSF. With that said, I'm fairly certain all those centers have also produced surgeons who are less than great.

    Quote Originally Posted by JScoli91 View Post
    In terms of long term comfort and function, that is what had me taken aback by your previous reply. You had said you can’t stay in one position comfortably for very long? Getting onto or off the floor is extremely difficult? Being on the floor sitting for example is out of the question? Sleeping without a pillow? If that is realistically what is in store for me then I really need to start re thinking things I think. I guess it’s hard to get a good judgement on what basic day to day things will be like after a full fusion. I know everyone is different but if there were a way I could get even some semblance of an idea I think it would help at least a little bit. This might be too personal, but...with a full fusion and without the rotation, how is something as personal as wiping when going to the bathroom? Random question I know but I keep thinking about how I would do everything after a surgery like that and I am fully healed.
    Unfortunately, this is an area that is incredibly variable. As mentioned previously, we've seen people with long fusions who are incredibly flexible. They can do things like touch their toes, play golf, sit on the floor, etc.

    With that said, those of us who ended up with less flexibility, suffer from everyday function, including issues with dressing, bathing, wiping, sex, etc. If I knew why there's such a disparity, I'd probably be famous. I suspect that the biggest factors are age and how active and flexible one is before surgery. Unfortunately, as many of us know, this can all be a real Catch 22. Daily pain, especially when it involves nerve pain in the legs, can definitely lead to inactivity. I personally was incredibly active until my early 30's. I hiked, skied, and played competitive sports. As I started having pain, I stopped doing all of those things one-by-one.

    --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

  4. #49
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    Is there any idea, in a general sense, at what age range a surgeon wouldn’t do a full lumbar fusion for the sake of flexibility and mobility, even if the curve continued to increase while it wasn’t fused?

    I just can’t wrap my head around how my curve started at 25 and corrected to 20. But then 5 years after surgery it’s documented back to 28. Then 10 years later it’s up to 40.
    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
    June/July 2020 - T10-S1 Fusion with SI fixation

  5. #50
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    Quote Originally Posted by JScoli91 View Post
    Is there any idea, in a general sense, at what age range a surgeon wouldn’t do a full lumbar fusion for the sake of flexibility and mobility, even if the curve continued to increase while it wasn’t fused?

    I just can’t wrap my head around how my curve started at 25 and corrected to 20. But then 5 years after surgery it’s documented back to 28. Then 10 years later it’s up to 40.
    That's an interesting question. Other than some surgeons not fusing past L3 or L4 and going to great lengths with osteotomies to reduce fused levels in the lumbar in teens, I don't recall any young adults talking about their surgeon trying to avoid lumbar fusion. I would not be surprised if they treated young adults similarly. But kids and young adults are probably only dealing with progression and not pain. You have great pain at a fairly young age so I think you are off the usual spectrum on this and the normal rules such that they are do not apply.

    Your progression is not out of the ballpark for a structural curve over time. That is yet another reason i think your lumbar is structural. They are other cases of lumbars collapsing like that in young people. One case was that woman with the small structural T curve and small compensatory L curve wherein her T curve stayed small but her lumbar collapsed into a big structural curve. She is a case that shows some small percentage of people might benefit from lowering the trigger angle for surgery on her T curve. But we will never know who these few people are ahead of time and it is not certain that fusing her T curve in the thirties would have prevented to lumbar collapse but it might have because the T curve was likely able to be hyper corrected driving the lumbar pretty darn straight. Who knows.
    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. #51
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    Do many people have their curves collapse? I have never heard of that happening. What does it look or present like? I’m assuming since everyone’s case is different it’s hard to attribute a general curve angle that that would happen at?
    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
    June/July 2020 - T10-S1 Fusion with SI fixation

  7. #52
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    Quote Originally Posted by JScoli91 View Post
    Do many people have their curves collapse? I have never heard of that happening. What does it look or present like? I’m assuming since everyone’s case is different it’s hard to attribute a general curve angle that that would happen at?
    That is just my word for a small curve progressing quickly absent growth as in an adult. So I don't mean my one daughter whose growth fueled a 5* progression a month for several months.

    I think I used it in the context of that one women a I mentioned who had a small compensatory L curve that got very large while her structural T curve stayed pretty much the same. This is easily one of the weirdest cases I have ever read about.

    Once I started using that word, some other posters thought their curve qualified as collapsed just on the basis of having a large progression in a young adult.

    HOLD THE PHONE!!! Here is a thread I started a while ago with a surgeon talking about "collapsed" curves in people.... that is where i got the term.

    http://www.scoliosis.org/forum/showt...quot-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."

  8. #53
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    here is the case I was banging on about so much... talks about pregnancy also. Lots of parallels to your case I think.

    https://drlloydhey.blogspot.com/2007...scoliosis.html

    Yesterday Jaclyn and I saw a lovely 29 yo woman at Hey Clinic who was diagnosed with a R thoracic scoliosis as a young teenager. The curve was followed with serial X-Rays, and by the time she turned 17 and had stopped growing, her thoracic curve was 30 degrees, and her lumbar compensatory curve was 18 or so degrees. At that time the patient remembers being told that “she did not need to worry” since she was “done growing” and her curve was not that large.
    She came in to Clinic today with questions about getting pregnant and having children with her scoliosis.

    Her X-Ray shown above shows that her thoracic curve was still around 30 degrees, but her lumbar curve was now approximately 39 degrees, with severe disc collapse especially at L23 level.
    She was really surprised to see the degree of progression over the past 12 years.

    Why did the curve below collapse? The answer is that the asymmetric disc and facet loading over the past 12-18 years has caused an increased rate of wear of these joint surfaces. Once the discs and facet joints begin to settle and wear out, ongoing collapse can occur, which causes a vicious cycle of asymmetric loading, leading to further collapse, and so on. We use the analogy in clinic that the “car is out of alignment”, causing the “tires” (Disks) to wear out prematurely. In this young lady’s case, her spine may have been quite stable for years, then at some point the disc and facet joint wear progressed to the point that rapid curve progression and posture change occurred.
    Could this collapse have been prevented? It is hard to say for sure, but it is possible that if the thoracic curve had been straightened and fixed when she was young, then the lumbar curve would have gone down to near zero degrees. This centering of the load may have prevented the asymmetric disc collapse in that mid-lumbar area. This possible prevention of later lumbar and/or thoracic collapse and degeneration is one of the benefits of early fixation of scoliosis in the adolescent or young adult.
    --------------------

    Here are some threads discussing collapses, saving lumbar levels, among other things that maybe relevant to your situation.

    http://www.scoliosis.org/forum/showt...ult&highlight=

    http://www.scoliosis.org/forum/showt...age&highlight=

    http://www.scoliosis.org/forum/showt...ter&highlight=

    http://www.scoliosis.org/forum/showt...ity&highlight=
    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. #54
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    Quote Originally Posted by JScoli91 View Post

    Anyway, so far the surgeon I have talked to locally in my area has been very up front with the risks and potential challenges, etc. He wanted me to have a second opinion to ease my mind, it wasn’t me wanting a second opinion to double check him. I think that speaks to a surgeons merit and character when he can put his personal pride and ego aside thats attached to his opinion and be willing to welcome in the voice of another surgical colleague, don’t you think? If I were to do either surgery locally instead of in Seattle at UW I don’t have a lack of confidence in my surgeon but rather the rural area that we live in and the hospital it would be at and the resources that it has. Is that grounded in a solid concern or makes sense?
    Yes.......

    I think that it does take some guts to take on a serious procedure like a stacked scoliosis ALIF, and he wouldnt offer unless he knew he could do it, and that his team was sound, along with the equipment at the hospital. So I would say yes, he has scored some bonus points.

    I had 2 scoliosis surgeons, and a vascular surgeon. They did not perforate the Peritoneum. They use blades to slide everything over and do not get into the intestines. My vascular surgeon started the hole, and my scoliosis surgeons came in later. The vascular surgeon is also the person who closes everything up coming back out. This is meticoulous work..
    I would address his team.....who is the vascular surgeon, and who else will be there for the operation.
    https://en.wikipedia.org/wiki/Peritoneum

    Its also nice to be close to home. I did my surgeries in Reno which is not a scoliosis mecca like some of the big centers in the US. The one thing about larger centers like UCSF is that you have 1000 plus medical experts all located together. There has to be some value in this.

    Linda had a "Should I Have Scoliosis Surgery" test years ago on her website. A series of questions relating to scoliosis with a numerical score at the end. I took it a few times and failed miserably. In other words, I needed surgery. I tried searching for it and couldnt find it. It's a good test with pertinent questions. Linda could you post this sticky? Sure would like to see it again.

    Ok, so bonus point add 1 (smiley face)

    I am in Colombia till Jan 21st. The Christmas parties are going full force down here so having a little trouble keeping up with the forum.

    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

  10. #55
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    Thank you all for all of the information, it is so helpful to be talking with everyone and keeping the dialogue open. It is truly appreciated.

    My husband and I have met with the vascular surgeon that works with the surgeon I would be using if we were close to home in having it all done. A very matter of fact, straight to the point, sharp shooting kind of guy. We have nothing but confidence with him. We spent over an hour talking with him about what his role in the procedure would be the possible benefits but also a long discussion of the possible risks. I am sure from a legal standpoint he was having that discussion with us to cover his own hiney in terms of liability and wanting us to be fully informed but it was nice to know he was being completely transparent.

    When he was talking about all the risks, especially with the aorta and vena cava being right there and what could possibly happen if things would go wrong; all that kept flashing through my mind were the faces of my babies (2 years and the other 6 months) I kept thinking, fear taking over my mind, “if I were to die my babies would have no first hand memories of me, it would all be photos or videos or stories”. Nothing in regards to the risks of the procedure were earth shattering to me (grew up with my mom as a cardiovascular OR nurse and I’m a dairy farmer so I know my way around anatomy) but it brought the risks much closer to home and cemented the reality of what the situation is and the cards we are shuffling around as we try to figure this all out.
    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
    June/July 2020 - T10-S1 Fusion with SI fixation

  11. #56
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    Quote Originally Posted by JScoli91 View Post
    Is there any idea, in a general sense, at what age range a surgeon wouldn’t do a full lumbar fusion for the sake of flexibility and mobility, even if the curve continued to increase while it wasn’t fused?
    It depends on the surgeon and the patient. One of the surgeons I worked with is a very conservative surgeon. He really tries to get his younger patients to avoid fusion in the lower lumbar area, for as long as possible. If a 50 year old patient is very active, he's most likely to still try to discourage them from lower lumbar surgery. If a 35 year old tells him they can't tolerate another day with their pain, he'll reluctantly agree to lower lumbar surgery.

    Quote Originally Posted by JScoli91 View Post
    I just can’t wrap my head around how my curve started at 25 and corrected to 20. But then 5 years after surgery it’s documented back to 28. Then 10 years later it’s up to 40.
    As you know, I'm not a surgeon, but I think it's likely that you have a fractional curve. That's a curve below your L1-L4 lumbar curve that is clearly seen in your most recent radiograph. While your lumbar curve is tilted to the left on the radiograph, the L5 vertebra is tilted to the right. Your curve probably increased as a reaction to the fractional curve.

    --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

  12. #57
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    Quote Originally Posted by JScoli91 View Post
    Thank you all for all of the information, it is so helpful to be talking with everyone and keeping the dialogue open. It is truly appreciated.

    My husband and I have met with the vascular surgeon that works with the surgeon I would be using if we were close to home in having it all done. A very matter of fact, straight to the point, sharp shooting kind of guy. We have nothing but confidence with him. We spent over an hour talking with him about what his role in the procedure would be the possible benefits but also a long discussion of the possible risks. I am sure from a legal standpoint he was having that discussion with us to cover his own hiney in terms of liability and wanting us to be fully informed but it was nice to know he was being completely transparent.

    When he was talking about all the risks, especially with the aorta and vena cava being right there and what could possibly happen if things would go wrong; all that kept flashing through my mind were the faces of my babies (2 years and the other 6 months) I kept thinking, fear taking over my mind, “if I were to die my babies would have no first hand memories of me, it would all be photos or videos or stories”. Nothing in regards to the risks of the procedure were earth shattering to me (grew up with my mom as a cardiovascular OR nurse and I’m a dairy farmer so I know my way around anatomy) but it brought the risks much closer to home and cemented the reality of what the situation is and the cards we are shuffling around as we try to figure this all out.
    While I applaud your desire to know all the answers, I caution wanting to know too much. I've known more than a few people who thought they wanted to know it all, but who eventually had to pull away because all the details ended up freaking them out. It's good to have a healthy, realistic expectation that complications can and do occur, but be careful about obsessing too much. :-)


    --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

  13. #58
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    Quote Originally Posted by titaniumed View Post
    Yes.......

    I think that it does take some guts to take on a serious procedure like a stacked scoliosis ALIF, and he wouldnt offer unless he knew he could do it, and that his team was sound, along with the equipment at the hospital. So I would say yes, he has scored some bonus points.

    I had 2 scoliosis surgeons, and a vascular surgeon. They did not perforate the Peritoneum. They use blades to slide everything over and do not get into the intestines. My vascular surgeon started the hole, and my scoliosis surgeons came in later. The vascular surgeon is also the person who closes everything up coming back out. This is meticoulous work..
    I would address his team.....who is the vascular surgeon, and who else will be there for the operation.
    https://en.wikipedia.org/wiki/Peritoneum

    Its also nice to be close to home. I did my surgeries in Reno which is not a scoliosis mecca like some of the big centers in the US. The one thing about larger centers like UCSF is that you have 1000 plus medical experts all located together. There has to be some value in this.

    Linda had a "Should I Have Scoliosis Surgery" test years ago on her website. A series of questions relating to scoliosis with a numerical score at the end. I took it a few times and failed miserably. In other words, I needed surgery. I tried searching for it and couldnt find it. It's a good test with pertinent questions. Linda could you post this sticky? Sure would like to see it again.

    Ok, so bonus point add 1 (smiley face)

    I am in Colombia till Jan 21st. The Christmas parties are going full force down here so having a little trouble keeping up with the forum.

    Ed
    Unfortunately, that was a document that I put up on my ScoliosisLinks website that I abandoned several years ago. I apparently didn't save a copy of the questionnaire. Sorry.
    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

  14. #59
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    Quote Originally Posted by LindaRacine View Post
    One of the surgeons I worked with is a very conservative surgeon. He really tries to get his younger patients to avoid fusion in the lower lumbar area, for as long as possible. If a 50 year old patient is very active, he's most likely to still try to discourage them from lower lumbar surgery.
    --Linda
    Why is this, Linda?

  15. #60
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    Quote Originally Posted by Tina_R View Post
    Why is this, Linda?
    I think mostly because he does everything he can to secure a good outcome. He knows that many patients are unhappy with their inflexibility.

    When I talk about my own inflexibility, I always say I'm unhappy with my restrictions. It's really important to understand that doesn't mean I made the wrong decision. Because of really bad leg pain, I could only stand for a minute or two before my revision surgery. So, although I hate that inflexibility, I'd actually still make the same decision to have surgery. While I have several functional issues, I can at least stand, and I no longer have lower back pain. For many of us, it's all a tradeoff. The best advice I can give you is to not expect perfect. It rarely happens.

    --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

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