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Thread: New To Forum - Revision needed?

  1. #16
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    Oct 2019
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    Washington state
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    I have been noticing more and more tightness around my shoulder blades and rib like pain that is centered in the middle of my back but other than that itís mainly my sciatica and the SI joint.

    I feel like even though a larger fusion would be limiting in flexibility I would learn to over come especially with so much of my life yet, I just canít keep doing this daily pain while at the same time knowing the problem will continue?

    How would SI fixation be more limiting in terms of flexibility compared to the lumbar fusion? From what I understand there isnít much movement of the SI joint in daily life and it is meant to stay pretty stable in and of itself.

    When my surgeon said that if we did the smaller fusion I would be back in 5-10 years to do the rest, that didnít seem like a good rate of return for how risky the fusion is in and of itself. Iím normally the type of person where if i know Iím going to be in pain and itís going to suck, I donít want to have to do it over again. Plus I canít imagine that leaving unfused vertebrae in between two separate fusions is a good idea...right?
    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

  2. #17
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    Sep 2003
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    Quote Originally Posted by JScoli91 View Post
    Ed, I donít know if I can do much more of the daily pain. On a normal or good day my pain is at a 4 or 5. On a bad day I am in bed crying at an 8. I am refusing to go religiously on narcotics because I am afraid that it would eventually lead to needing to mask the pain with a cocktail of narcotics while the curve and degeneration progresses further and further. I have heard of cases where once a patient opens the door to using narcotics doctors tend to latch onto that and defer surgery farther and farther into the future until the point where the person is on so many narcotics that they donít work and surgery is their only option. Plus the idea of being dependent on narcotics at such a young age and with two little ones to care for scares me.
    That's a healthy attitude about narcotics. Good pain docs will tell you that narcotics are good for short term traumatic pain, but not a good strategy for structural spine problems, where the pain will be ongoing. What happens is that more and more pills are needed to get even minimal improvement. Eventually, your brain sort of switches and the meds don't really do anything, but at that point, the patients are addicted, and weaning off them is very difficult, because on top of the pain, they feel very ill.

    Have you thought about trying injections? They work well for some people, and might help you avoid surgery for awhile.

    --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. #18
    Join Date
    Nov 2016
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    5
    Quote Originally Posted by JScoli91 View Post
    I have been noticing more and more tightness around my shoulder blades and rib like pain that is centered in the middle of my back but other than that itís mainly my sciatica and the SI joint.

    I feel like even though a larger fusion would be limiting in flexibility I would learn to over come especially with so much of my life yet, I just canít keep doing this daily pain while at the same time knowing the problem will continue?

    How would SI fixation be more limiting in terms of flexibility compared to the lumbar fusion? From what I understand there isnít much movement of the SI joint in daily life and it is meant to stay pretty stable in and of itself.

    When my surgeon said that if we did the smaller fusion I would be back in 5-10 years to do the rest, that didnít seem like a good rate of return for how risky the fusion is in and of itself. Iím normally the type of person where if i know Iím going to be in pain and itís going to suck, I donít want to have to do it over again. Plus I canít imagine that leaving unfused vertebrae in between two separate fusions is a good idea...right?

    I am also relatively young (34) facing revision surgery. Be sure your second opinion is a deformity specialist who performs a high volume of deformity surgeries (not a general spine surgeon). If you are looking for one,
    look at the part of the forum where people review their surgeons and you can ask there. Feel free to pm me if you want to talk and I can share with you my journey, especially as a young person.

  4. #19
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    Quote Originally Posted by JScoli91 View Post
    I have been noticing more and more tightness around my shoulder blades and rib like pain that is centered in the middle of my back but other than that itís mainly my sciatica and the SI joint.

    I feel like even though a larger fusion would be limiting in flexibility I would learn to over come especially with so much of my life yet, I just canít keep doing this daily pain while at the same time knowing the problem will continue?

    How would SI fixation be more limiting in terms of flexibility compared to the lumbar fusion? From what I understand there isnít much movement of the SI joint in daily life and it is meant to stay pretty stable in and of itself.

    When my surgeon said that if we did the smaller fusion I would be back in 5-10 years to do the rest, that didnít seem like a good rate of return for how risky the fusion is in and of itself. Iím normally the type of person where if i know Iím going to be in pain and itís going to suck, I donít want to have to do it over again. Plus I canít imagine that leaving unfused vertebrae in between two separate fusions is a good idea...right?
    Since I haven't had my S-I joints fused, I can't tell you from first-hand experience, but I have heard surgeons talk about limiting flexibility. I think that SIJ devices severely limit pelvic thrust. I'd be curious to hear from SIJ fusion patients about the issue of sex after surgery.

    Here's a website where patients are discussing SIJ fusion:

    https://www.letsrun.com/forum/flat_r...thread=4392582

    Also, I found a website with some images that might be of interest to you:

    http://www.southcoastspine.com.au/sacro-iliac-fusion

    The top two radiographic images show pelvic fixation screws, which cross the S-I joints. The vast majority of us who have been fused to the sacrum have one or two such screws.

    The bottom image shows S-I joint fusion devices. My advice would be to get a second opinion about whether SIJ fusion is necessary, and to ensure that your chosen surgeon has done more than a handful of these surgeries. I attended a course for an S-I joint device. I didn't try placing the devices myself, as I found them to be way too complex. Even watching the procedures was very confusing.

    --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

  5. #20
    Join Date
    Oct 2019
    Location
    Washington state
    Posts
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    Linda thank you for all the links and the information, I will be sure to look into it tomorrow after some rest (in too much pain now to focus on much of anything). I have had an injection before with very minimal results and an adverse reaction to sedation afterwards.
    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

  6. #21
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    Sep 2003
    Location
    Northern California
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    Quote Originally Posted by JScoli91 View Post
    Linda thank you for all the links and the information, I will be sure to look into it tomorrow after some rest (in too much pain now to focus on much of anything). I have had an injection before with very minimal results and an adverse reaction to sedation afterwards.
    If you ever decide to try injections again, I recommend doing it without sedation. I had injections a bunch of times without sedation. It's relatively pain free with the exception of the pain of having to awkwardly lay on a relatively hard table.

    --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. #22
    Join Date
    Oct 2019
    Location
    Washington state
    Posts
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    What is your gut feeling on leaving unfused vertebrae in between two separate fusions? Bad idea?
    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

  8. #23
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,263
    My feeling is if they think they can leave those levels unfused and still achieve pain relief then you might be a tethering candidate.
    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. #24
    Join Date
    Nov 2016
    Posts
    5
    Quote Originally Posted by JScoli91 View Post
    Linda thank you for all the links and the information, I will be sure to look into it tomorrow after some rest (in too much pain now to focus on much of anything). I have had an injection before with very minimal results and an adverse reaction to sedation afterwards.
    The only type of injection that has worked for me after having 10 over the course of 4.5 years was a transforaminal injection. I donít know if this applies to you but may be worth asking your dr about.

  10. #25
    Join Date
    Oct 2019
    Location
    Washington state
    Posts
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    That was the injection I tried and I only got maybe 3 months at the most of pain relief from 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
    June/July 2020 - T10-S1 Fusion with SI fixation

  11. #26
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    May 2008
    Location
    reno,nevada
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    I never did injections since I had too many things wrong. It just didnt make sense to me having multiple pain producers on each lumbar level. I can understand getting the works done (Stacked ALIF) having as much pain as a lumbar trainwreck can produce. I wanted one stop shopping and didnt want to go back in. I got my wish. I was 49. I waited 34 years for my surgeries, pushed the pain threshold to the limits. Crazy me. There were no guarantees....The horse blinders went on and I stared straight ahead with the main goal. Susan and I are the only "stacked" ALIF members on this forum.

    I didnt lift more than a dinnerplate for the first 6 months. No BLT's (Bending, lifting, twisting) allowed. Picking up kids will be extremely difficult if not impossible after surgery. Getting down on the floor is a challenge. Once you get down there, its hard to stay down there as we constantly have to keep moving.....

    One surgeon who is fully capable of revision surgery in the Seattle area is Dr Hart. He worked on Susans revisions and did her L2-Sacrum ALIF.
    https://www.beckersspine.com/spine/i...ighlights.html

    Hi Standup, welcome to the forum....

    I didnt think you guys would be posting so late in the evening. You would think I would know better as patients in pain usually post late at night! Duh....

    Some great SI links and posts from Linda....I elect post #17, post of the month, a mandatory read.

    Spinal's is a member that had her SI's done. She is in England. You could PM her on the SI question. I would want 100% verification before doing the SI joints. One thing that could be done is to delay the SI joint procedure should you persue any surgical options....Its an idea to discuss with your surgeon. She is the only member here to have her SI joints fused unless Linda knows otherwise.

    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

  12. #27
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    Quote Originally Posted by JScoli91 View Post
    What is your gut feeling on leaving unfused vertebrae in between two separate fusions? Bad idea?
    I think there's a high likelihood that you'll eventually have those segments fused. However, there's a possibility that they won't degenerate, or that they won't degenerate enough to cause significant pain. If I were in your shoes, I think I'd probably try the smaller surgery at this point, mostly because you're so young, and you have such young children.

    --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. #28
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    Oct 2019
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    Washington state
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    Quote Originally Posted by titaniumed View Post

    I didnt lift more than a dinnerplate for the first 6 months. No BLT's (Bending, lifting, twisting) allowed. Picking up kids will be extremely difficult if not impossible after surgery. Getting down on the floor is a challenge. Once you get down there, its hard to stay down there as we constantly have to keep moving.....

    Ed
    So are you saying that I wont ever be able to pick up small kids again with that fusion, or just during the very limited activity window during the immediate healing from surgery? I would imagine getting down onto the floor and up off of the floor is a multi-step process forever after a procedure like this is done. Is it just awkward or is it also painful? Being on the floor also for prolonged periods is the same way?
    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

  14. #29
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    Sep 2003
    Location
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    Quote Originally Posted by JScoli91 View Post
    So are you saying that I wont ever be able to pick up small kids again with that fusion, or just during the very limited activity window during the immediate healing from surgery? I would imagine getting down onto the floor and up off of the floor is a multi-step process forever after a procedure like this is done. Is it just awkward or is it also painful? Being on the floor also for prolonged periods is the same way?
    Hi...

    You will almost certainly be restricted from doing that for 3-6 months after surgery. Beyond that, it may or may not be possible. I do not have the ability to sit on the floor. I think that's from a combination of a long fusion and muscle tightness. If I end up on the floor (usually by mistake), it is incredibly awkward for me to get back up again. That's also because of multiple issues (for example, I've had small breaks in both of my kneecaps in the past. To get back up to a standing position after a long spinal fusion, I think one has to be able to get onto their knees. For me, that's incredibly painful.).

    So, you may be one of those who doesn't really have a problem. Your age is certainly on your side.

    --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

  15. #30
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    Oct 2019
    Location
    Washington state
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    Although slightly scary I appreciate the transparency in what could or could not be very real consequences of a procedure like that. I was told that whatever flexibility and mobility you have going into a procedure like that, the more likely you are to retain it especially in areas that are not being fused or made rigid. My hips are very flexible and I am pretty ambidextrous with my feet (picking things up off the floor, etc.), a skill I proudly kept as a quirk after my first fusion that may now prove very beneficial. I am hoping that if we go the route of the long fusion and SI fusion I would still retain a lot of my hip flexibility.

    This whole time I have been fighting with insurance to let me have a second opinion for this procedure I went ahead and started PT to hopefully get me in the best shape possible for the procedure when I have it done, no matter if its the smaller or larger fusion. I still have maybe 5-10 pounds of pregnancy weight to lose but alot of what I feel I need to do physically for prepping for another fusion would be core strengthening and muscle toning and working on flexibility in order to compensate for post surgical limitations and even longer term limitations.

    PT has been SUPER slow in terms of progress and abilities. I don't know quite clearly if it is my SI joint arthritis or if it is the bone-on-bone L5-S1 that hurts so bad but its always when I am doing my assigned exercises or when I am laying flat on my back and I try to get up to a sitting position. This is whenever I am in that position and trying to get out of it. When I try to walk afterwards it hurts so bad to put weight on that leg right in the same spot, by my iliac crest and deep in my butt cheek. For a while there I was thinking, maybe instead of my SI joint its Piriformis syndrome and if I just get that muscle working more like it should it would get better but I doubt thats what it is.

    I was told by my original surgeon that he would fuse the SI joints as a means to hopefully prolong the life of my hips. However, I would still more than likely need hip repair or replacement at an earlier age since all of my bending and flexibility will come from that area. Do they do SI fusions pretty regularly with longer lumbar fusions now a days?
    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

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