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Thread: Chances of needing to be fused to sacrum later in life?

  1. #1
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    Chances of needing to be fused to sacrum later in life?

    Hi all,

    I am using this question to see if there is any knowledge or advice on how to best take care of my lower spine.

    I am fused T4-L4, so L-4 is my own, then I have a small fusion from L5-S1 (ALIF so no bars, just 2 big screws and an artificial disk). My surgeon explained how the long fusion puts strain on the vertebrae that are not fused and I am starting to worry how to protect poor L4 from getting totally destroyed over the rest of my life. I know there is a good chance I will need a later surgery-my surgeon guessed my 60's, but he also said it could be much sooner or I might not need it all.

    So are there any measures I can take? He said no to running/jogging. I know keeping fit and exercising is important, but does this mean I should avoid high impact stuff? I also know of a man who broke a rod doing crunches (granted he was doing like 100 a day) so I just wondered if any of you have any input on what to do or not do. Or is it likely I will need the second fusion? Also, if you did need to go back for a further fusion, how did you know you needed it?

    Thanks. I want to do this recovery right. Now time for my glorious afternoon nap

    Jana
    Diagnosed with idiopathic scoliosis at age 11
    Dr. Edgar Dawson of UCLA
    Braced and "stopped" below 50 degrees
    Age 25: 47 degrees, 48 degrees
    Age 38 (3 babies later): 60 degrees, 63 degrees and 2.5 inches shorter
    Age 41: 64 degrees, 70 degrees
    Dr. Gregory Mundis Jr. of Scripps Hospital, La Jolla CA
    June 2015-ALIF on L5-S1 for a slipped and degenerated disk
    June 14, 2016-T4-L4 spinal fusion with instrumentation
    Post-surgery: 16 degrees, 12 degrees and 2 inches taller

  2. #2
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    I don't know for sure but once you are healed I would say keep yourself strong. Be mindful of lifting and mindful of your posture. Keep your legs strong.
    I would say you will know because of pain or numbness. Also your doctor will take X-rays at certain intervals and watch your spine.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  3. #3
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    Quote Originally Posted by Jjohnsonphd View Post
    Hi all,

    I am using this question to see if there is any knowledge or advice on how to best take care of my lower spine.

    I am fused T4-L4, so L-4 is my own, then I have a small fusion from L5-S1 (ALIF so no bars, just 2 big screws and an artificial disk). My surgeon explained how the long fusion puts strain on the vertebrae that are not fused and I am starting to worry how to protect poor L4 from getting totally destroyed over the rest of my life. I know there is a good chance I will need a later surgery-my surgeon guessed my 60's, but he also said it could be much sooner or I might not need it all.

    So are there any measures I can take? He said no to running/jogging. I know keeping fit and exercising is important, but does this mean I should avoid high impact stuff? I also know of a man who broke a rod doing crunches (granted he was doing like 100 a day) so I just wondered if any of you have any input on what to do or not do. Or is it likely I will need the second fusion? Also, if you did need to go back for a further fusion, how did you know you needed it?

    Thanks. I want to do this recovery right. Now time for my glorious afternoon nap

    Jana
    Hi Jana...

    I think the risk is significant, but I can't tell you the percentage. You might want to ask Dr. Mundis, as he's done a huge amount of research, and probably has at least an educated guess.

    I was fused to L3 originally, and desperate not to require fusion to the sacrum. I avoided high impact things like the plague. It didn't matter. About 15 years after my original fusion, I knew it was a lost cause. I realized I had degeneration at L3-4, L4-5, and L5-S1 when I started have new lower back pain when standing or walking, and leg pain (radiculopathy).

    I do think it's a good idea to stay as fit as possible, and keep your core strong. You might still need additional surgery, but I can't tell you how strongly I feel that you should do what you can to avoid the need for more surgery.

    Hope you're one of the lucky ones.

    --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. #4
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    Susie*Bee is at 8 or 9 year post op I think and is fused to L4. She has no issues she has expressed. She got a very good correction and maybe that is the key factor in avoiding extensions of fusion at the distal end. I think she takes it very easy too but I am not sure.
    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 Pooka1 View Post
    Susie*Bee is at 8 or 9 year post op I think and is fused to L4. She has no issues she has expressed. She got a very good correction and maybe that is the key factor in avoiding extensions of fusion at the distal end. I think she takes it very easy too but I am not sure.
    I don't think the amount of correction has any affect on the risk of distal degeneration. The one thing that reduces risk in long fusions is a level LIV.

    --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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    Well Boachie included mention of the issue of alignment when he said a person fused to T12 or L1 probably won't need an extension. I took that to mean if the alignment was't good then the chance of needing an extension were higher.

    Also Dr. Hey has stated that better alignment saves unfused discs.
    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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    Quote Originally Posted by LindaRacine View Post
    Hi Jana...

    I think the risk is significant, but I can't tell you the percentage. You might want to ask Dr. Mundis, as he's done a huge amount of research, and probably has at least an educated guess.

    I was fused to L3 originally, and desperate not to require fusion to the sacrum. I avoided high impact things like the plague. It didn't matter. About 15 years after my original fusion, I knew it was a lost cause. I realized I had degeneration at L3-4, L4-5, and L5-S1 when I started have new lower back pain when standing or walking, and leg pain (radiculopathy).

    I do think it's a good idea to stay as fit as possible, and keep your core strong. You might still need additional surgery, but I can't tell you how strongly I feel that you should do what you can to avoid the need for more surgery.

    Hope you're one of the lucky ones.

    --Linda
    Thanks for this note Linda. Your situation is exactly what Dr. Mundis explained can happen and it happens for some. I hope I am a lucky one too. Especially with my eye complication, I will be very nervous about going under for surgery again. I will ask Dr. Mundis about this next time I see him. I started looking through his published articles last night. I had no idea he was so published. So glad there is so much active research in the scoliosis world. Thanks again, your feedback is invaluable on this site.

    Jana
    Diagnosed with idiopathic scoliosis at age 11
    Dr. Edgar Dawson of UCLA
    Braced and "stopped" below 50 degrees
    Age 25: 47 degrees, 48 degrees
    Age 38 (3 babies later): 60 degrees, 63 degrees and 2.5 inches shorter
    Age 41: 64 degrees, 70 degrees
    Dr. Gregory Mundis Jr. of Scripps Hospital, La Jolla CA
    June 2015-ALIF on L5-S1 for a slipped and degenerated disk
    June 14, 2016-T4-L4 spinal fusion with instrumentation
    Post-surgery: 16 degrees, 12 degrees and 2 inches taller

  8. #8
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    Quote Originally Posted by Pooka1 View Post
    Well Boachie included mention of the issue of alignment when he said a person fused to T12 or L1 probably won't need an extension. I took that to mean if the alignment was't good then the chance of needing an extension were higher.

    Also Dr. Hey has stated that better alignment saves unfused discs.
    I'm totally confused about both statements. Are you saying that having a straighter spine saves levels? I've always thought it was balance. That is, if the curve is balanced, with the LIV being as close to horizontal as possible, the risk of distal adding on is greatly reduced. Are we saying the same thing, but in a different way?

    --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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    Linda, This could be what Sharon was referring to....


    .https://www.hss.edu/professional-con...l-stenosis.asp

    Those with deformity with low back pain and radicular symptoms and degeneration are a tough group. The adolescent or the young adult who comes in with a 60 degree scoliosis is otherwise healthy. They may have pain, but they have no stenosis, no degeneration, no segmental instability. So we measure the curve, assess the fusion levels, and fuse them to whatever levels we chose and you are done. You don't have to worry about the junctional levels until maybe 20 years later when they come in with junctional degeneration especially if they haven't been properly aligned, functional deformity may result from excessive activity causing the unfused segments to eventually go through an early degenerative process.

    If you fuse a 13-year-old to L4, 20 to 25 years later, at the most, he or she is going to have problems at L4-5 and L5-S1 levels. So I tell them to take it easy a little bit, and avoid excessive high impact, rotational sports and activities, no other things that will cause early degeneration. But if you fuse them to L1 or T12, they can do very well for the rest of their lives, provided the remaining lumbar spine is properly aligned and has not shifted.

    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. #10
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    Yes thanks Ed. Exactly.

    And there are several posts about Dr. Hey talking about aligning the spine with earlier and better correction so that the load on the unfused lower discs is even. I have posted about him doing osteotomies to help younger patients avoid fusion of the lumbar.

    I don't think this stuff is the same as achieving balance because a person can have two 25 degree curves with the top being a fused structural curve and the bottom being the compensatory curve that comes to match the thoracic. That is balanced yet that 25 degree unfused lumbar has obvious uneven loading on the discs that could cause damage over time. If the T curve is straightened more to drive more straightness in the unfused lumbar or if a surgeon stands on their head doing osteotomies to achieve a straighter unfused lumbar, the loading on the unfused level discs is more even.

    This is part of what Dr. Hey means a stitch in time saving nine as I understand it. Get a better correction perhaps by fusing a bit earlier and hope to avoid damage to the discs in the unfused levels by having them aligned better. He has used the tire alignment analogy where you get uneven tire wear when the car is out of alignment. It is the same with discs.

    By the way, I think adding on is only one form of progression. I think you can get progression without the phenomenon of adding on.
    Last edited by Pooka1; 07-23-2016 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."

  11. #11
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    Dr Boachie says “Take it easy a little bit” I get a kick out of that, if he only knew what I was doing on skis years ago....talk about spinal abuse!

    A total complete sedentary lifestyle? Do Monks have spinal surgery? (Someone needs to look that one up) He he

    People without scoliosis that have perfect alignment can have DDD that eventually leads to herniated discs. I would say that the initial force, that 1st damage event starts the downward spiral. Damage, heal 90%, more damage, heal 90% repeatedly leads to major problems. There is rarely a complete healing.

    Simply bending forward and lifting a box exerts high forces on the discs, forward means compressing the front of the disc into a wedge that forces material back towards the spinal cord. Funny how herniated discs always protrude or extrude in the direction of the cord. For scoliosis patients, this is a complete disaster. I have learned to avoid lifting if possible, its easier to ask someone to help. With young males, I always ask for someone “young and tough” that works well. LOL What? your not tough? Never mind....(tricks of the trade)

    Obviously, competitive pogo sticking is out, but it’s the simple everyday lifting events that probably do the most damage.

    Stress does insurmountable damage....I have been there, and avoid it at any cost. Deep Breaths....

    That’s where the bunnies come in. They only worry about one thing, and that’s carrots. LOL

    And hurdling competitions. (See photos)

    Ed
    Attached Images Attached Images
    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

  12. #12
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    Quote Originally Posted by titaniumed View Post
    If you fuse a 13-year-old to L4, 20 to 25 years later, at the most, he or she is going to have problems at L4-5 and L5-S1 levels. So I tell them to take it easy a little bit, and avoid excessive high impact, rotational sports and activities, no other things that will cause early degeneration. But if you fuse them to L1 or T12, they can do very well for the rest of their lives, provided the remaining lumbar spine is properly aligned and has not shifted.

    Ed
    For the record, my comments were specifically about fusing to L4, since that's where the conversation started. Fusing to T12 or L1 is a completely different animal.

    --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. #13
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    Yes....fusing down to T12, L1 is like a breath of fresh air. (In young patients)

    At first, I was wondering about which levels Jana had fused and see that he left the L4-5 for mobility....

    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

  14. #14
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    Quote Originally Posted by Pooka1 View Post
    He has used the tire alignment analogy where you get uneven tire wear when the car is out of alignment. It is the same with discs.
    Yeah....tires are important, so are discs. I have realized that nitrogen for tires is just a tire store scam since air is 79% nitrogen. I tried it in my RV (Nitrogen in the rear, air up front). There was no difference in leakage rates.

    One of these days, it would be nice to have some sort of stem cell injection or some simple way of dealing with discs. This would solve a few problems.

    The world is waiting

    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

  15. #15
    Join Date
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    Location
    Washington DC
    Posts
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    Same issue...

    Quote Originally Posted by Jjohnsonphd View Post
    Hi all,

    I am using this question to see if there is any knowledge or advice on how to best take care of my lower spine.

    I am fused T4-L4, so L-4 is my own, then I have a small fusion from L5-S1 (ALIF so no bars, just 2 big screws and an artificial disk). My surgeon explained how the long fusion puts strain on the vertebrae that are not fused and I am starting to worry how to protect poor L4 from getting totally destroyed over the rest of my life. I know there is a good chance I will need a later surgery-my surgeon guessed my 60's, but he also said it could be much sooner or I might not need it all.

    So are there any measures I can take? He said no to running/jogging. I know keeping fit and exercising is important, but does this mean I should avoid high impact stuff? I also know of a man who broke a rod doing crunches (granted he was doing like 100 a day) so I just wondered if any of you have any input on what to do or not do. Or is it likely I will need the second fusion? Also, if you did need to go back for a further fusion, how did you know you needed it?

    Thanks. I want to do this recovery right. Now time for my glorious afternoon nap

    Jana

    Hi Jana,
    I just had an extension of my fusion, so now I'm fused from T-4 to L-4. I asked Mike LaGrone the same question - what is the risk of needing that final fusion to the sacrum. He said the risk is actually negligible as long as I walk as much as possible. Also, don't wear heels. So my place of work bought me a treadmill desk and now I put in between 4 - 6 miles a day. I also invested in some incredible flats;-) Mike has never steered me wrong, so I'm going to be cautiously optimistic.

    Good luck to you!
    Last edited by Prfbones; 07-30-2016 at 08:57 PM.
    "The plural of anecdote is not data" --Frank Kotsonis

    Ph.D. in Bone Biology
    Harrington rod and Leuke sublaminar wires 2/1986, fused T4 to T12.
    First revision 3/1987 fused pseudoarthrosis, placed CD instrumentation from T10-T12.
    CD instrumentation removal 10/97 following breakage.
    Leuke wire removal 4/99.
    Salvage surgery; Harrington removal 1/2000, fused to L2.
    Ruptured disc, fusion extension to L4 3/2016.
    Surgeons: David Bradford, Francois Denis, Mike Lagrone

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