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Thread: "The L5-S1 Question" Is it worth it?

  1. #1
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    "The L5-S1 Question" Is it worth it?

    I had my pre-op today for my revision on November 13 and walked away slightly confused on what is best. I am currently fused T12-L2 and am looking at going T3 but the question is do I stop at L4 and risk another fusion or go ahead and fuse to the sacrum? Any thoughts?

    TAMENA
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

  2. #2
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    How healthy are your L4 and L5 vertebraes? My L5 was in a grey area and Dr. Hu gave me a choice of either stopping at L5 or going down to S1. She said that stopping at L5 will preserve a little more motion, but I will be back for a revision and extension to the sacrum in 5-10 years. I was debating a little about losing flexibility and she asked me: "How would you feel about having to go through this surgery again in several years?". I responded that I would absolutely hate it and she said that here is my answer. So, we went down to S1 and I am glad we did.

    Yes, you lose flexibility with a fusion to the sacrum, but it's not the end of the world. I still can do whatever I need to do, but differently - I can even put my socks on without a sock aid at 7 months. Last week I managed to put on a thick pantyhose (not a sheer type) and I thought that would never be possible. I had to dance around it somewhat, but I got it on without a sock aid. And even if I had to use that sock aid for the rest of my life, that would not be a terrible thing.

    Tamena, did you have a second opinion or you are just going to the doctor who did your first surgery? Ask the doctors(s) what are the chances of you having to go through another surgery to extend the fusion to the sacrum in several years. May be your L4 and L5 are healthy and that is not a threat, but if you hear that you're somewhere in a grey area... my advice would be to go to the sacrum.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  3. #3
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    Quote Originally Posted by tae_tap View Post
    I had my pre-op today for my revision on November 13 and walked away slightly confused on what is best. I am currently fused T12-L2 and am looking at going T3 but the question is do I stop at L4 and risk another fusion or go ahead and fuse to the sacrum? Any thoughts?

    TAMENA
    Is your surgeon recommending you go all the way to the sacrum? Since I know what the difference between being fused to L3 and being fused to S1 is, I would personally do anything I could to avoid being fused to the sacrum, even if the chance that I would need surgery later on is great. For example, if a surgeon told me there was a 90% chance that I'd need additional surgery later on, I'd take that chance. I don't, however, know about 91%. ;-) While I'm glad I had the surgery, and delighted to be out of pain, I really hate having to be fused to the sacrum.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  4. #4
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    I have to admit I didn't do a lot of research about being fused to sacrum (or in my case, pelvis), I just went for it. I didn't even get a second opinion when Dr. Errico told me that's what he wanted to do. But I'd seen my X Rays, and that area of my spine just *looked* so misshapen and crushed. And that's where all my pain was localized. So I just felt in my gut that it was the right thing to do. So I guess, I have the same question as Tamena, how do you know when you should fuse to sacrum or not? (I probably should have asked that question before my surgery, but most of the time I still feel good about my choice.)
    Surgery June 18 by Dr. Errico at NYU Hospital for Joint Diseases at age 41.
    Fused T10-Pelvis.
    "Ask me about my brand new lordosis!"

  5. #5
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    My gut tells me to just do it, especially after I was told that there is a high chance that we would eventually have to extend in the future. This will be my second major surgery is one years time and I am ready to just be done with the whole thing. I just want to make sure I have no regrets before making the final decision, because right now I keep second guessing myself.

    Tamena
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

  6. #6
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    Tamena,

    If the doctor tells you there is a high chance of extending the fusion in the future - think if you want to take that chance. Different people have different risk tolerance. Linda mentioned in the post above that she would take that chance, but I would not. I wanted to have only one surgery and would absolutely hate it if I had to go through the whole ordeal again. The goals of my surgery were to stop progression, reduce pain and as lame as it sounds, get a good cosmetic result. I thought that losing flexibility was a fair trade-off for the benefits I was getting.

    As of today, the only thing I can't do is to clip my toenails, but I am very tall with long legs and I was always getting pedicures anyway, so that's not a big tragedy for me. I can look awkward doing some things, but the point is - I can do anything I want albeit differently. It can be tricky, but doable.

    You're also younger, 34, and I am 45, and may be that's why the doctor wants to preserve your flexibility. Do you dance or do any sports that require good flexibility? If so, then your logic might be different. Fusion to the sacrum would definitely affect your ability to dance or do yoga. I feel for you - you had your surgery last year, and now facing another decision...
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  7. #7
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    I do not do anything that requires that much flexibility. All that disappeared the day the pain became bad to begin with. My family is active in sports, but my role now is more coach/mom. I called Kelly's office today and let them know that I do not want to risk another surgery. Two in a year is too many for me! I am going to do T3-sacrum with pelvic fixation. Now I just need to Woman up and get my mind set and ready. I am ready physically because I am tired of the pain, but having this surgery a year ago I have not forgotten the recovery. That I do not look forward to, but with the strength of you guys here on the forum, my family and friends, and of course my faith I have no doubt that I will over come the nerves and pain and will push through to a much stronger woman! Thank you all!

    Tamena
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

  8. #8
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    Tamena,
    I am so sorry you have to go through another surgery. Was it a surprise to Dr. Lenke that you needed to extend the fusion so soon after your first surgery?
    I was much older than you at the time of my surgery, but was never asked my opinion by Dr.Lenke. I was fused T4-sacrum and never questioned it. Actually, I am thankful that he didn't ask my opinion since I really wouldn't have know how to respond. I am now 63 and don't feel a bit cheated out of life because of my lack of flexibility. Check out my video in my surgery which was when I was finally given permission to play golf. I want to put an updated video with my signature because I feel so much more flexible now at 2 1/2 years post op. I might have had a different opinion about the length of the fusion if I had been younger at the time.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  9. #9
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    Like Karen, I don't feel cheated and am happy to be fused to sacrum. I wasn't given the option, the surgeon made the decision for me and if I'd been given the option and told that if I don't get fused to sacrum, I may be in the running for more surgery down the track, there'd be no question. We are all different and our tolerances I guess, are also different, but I would not have risked it.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  10. #10
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    Peabody, ma
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    Iam also fused from t5 to s1 and less than one year of recovery. I am able to tie my shoes, and sort of reach my toes to cut my nails. Putting on pantyhose is a little different now and takes a little longer, but I can do it. You just don't know how flexible you are going to be. Good luck. Just as a side note, I would not want to go through a second surgery in one year, never mind have the possibility of a third down the road. Wishing you well.

  11. #11
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    I've now completed my third week of PT, and while I still can't bend, and I don't know if I ever will be able to, yesterday I leaned way over the bed, bent ever so slightly at the hip flexor area, and pet my cat who was sitting on the middle of the bed. I never believed I would even be able to do that much! So there might more flexibility in your future than you may think!
    Surgery June 18 by Dr. Errico at NYU Hospital for Joint Diseases at age 41.
    Fused T10-Pelvis.
    "Ask me about my brand new lordosis!"

  12. #12
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    I am fused to the pelvis and really do not think that I am limited. I have difficulty putting on my R sock most of the time....and that's about it. I have not tried panty hose, but I suppose that if I [and Mark] am going out to dinner with Irina and Dave near San Francisco soon, maybe I should try them! Seems strange to hear Linda wish that she was not fused to the pelvis, but I find little limitation and great happiness at the prospect of getting on with my life and being in so little pain now. I use my thighs a lot for getting up and down and that is a big change for me. Have I tried back bends, horse back riding, rafting, running....no, but I will try rafting and horse back riding in the future. I used to be great at back bends....maybe 50 years ago or so.

    Neither surgeon that I saw for my 2 opinions gave me a choice, mainly because of my age I suppose [66] and the fact that my lumbar area was pretty much shot. I never asked about not going to the sacrum as from the beginning, that was the only route that sounded rational.

    Would being fused to the spine limit you professionally?

    Susan
    Last edited by susancook; 10-20-2013 at 07:37 PM.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  13. #13
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    Susan, that was one of my fears but realistically I don't think it would affect me too much at work. All my tables, with the exception of the casting (which we don't use very often.)table raise to my height so it does not require me to bend. Taking X-rays may be tricky, but I have been strengthening my legs and practicing my squats so hopefully I will be able to adapt there too. My only fear is catching a patient if they go to fall (for I have many older patients in their late 90's who still only use a can but trip quite often) and if the need arrives to have to transfer a patient from a wheelchair to the table for tougher procedures. I won't start back to nursing home rounds till next May/June so that gives me 6-7 months before having to deal with patients that try to fight us.

    Like you, my back bend cheer leading stunt day has long gone, lol! And I don't mind not being on the wrestling mat with my boys for I would rather be side line as they are getting too big and tough for me, hehe!

    I am at peace with my decision to bite the bullet and make adjustments now vs having to do this a third time. Now it is the waiting game. Three and a half weeks of being anal about germs, the house getting perfect, and training my temp so I do not stress about my patients. I'm sure in another week or so all the other nerves may show their ugly face, but I am not second guessing myself this time.

    TAMENA
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

  14. #14
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    San Jose, CA
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    Glad to hear that you came up with a firm decision and are not second-guessing yourself. These doubts are the worst, right? I think that fusion to the sacrum would have the same effect on your professional life as fusion to L4 would. I think that catching a patient who is about to fall would be difficult with either fusion to S1 or L4, and I hope you don't have to do that any time soon!
    Last edited by Irina; 10-20-2013 at 10:54 PM.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  15. #15
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    Quote Originally Posted by tae_tap View Post
    Susan, that was one of my fears but realistically I don't think it would affect me too much at work. All my tables, with the exception of the casting (which we don't use very often.)table raise to my height so it does not require me to bend. Taking X-rays may be tricky, but I have been strengthening my legs and practicing my squats so hopefully I will be able to adapt there too. My only fear is catching a patient if they go to fall (for I have many older patients in their late 90's who still only use a can but trip quite often) and if the need arrives to have to transfer a patient from a wheelchair to the table for tougher procedures. I won't start back to nursing home rounds till next May/June so that gives me 6-7 months before having to deal with patients that try to fight us.

    Like you, my back bend cheer leading stunt day has long gone, lol! And I don't mind not being on the wrestling mat with my boys for I would rather be side line as they are getting too big and tough for me, hehe!

    I am at peace with my decision to bite the bullet and make adjustments now vs having to do this a third time. Now it is the waiting game. Three and a half weeks of being anal about germs, the house getting perfect, and training my temp so I do not stress about my patients. I'm sure in another week or so all the other nerves may show their ugly face, but I am not second guessing myself this time.

    TAMENA
    Tamena, sounds you have thought this through and have decided on your surgery. When I had my first appointment with Dr. Hu, she asked me what I did professionally. I told her OB GYN internationally. She said that she did not want to do a surgery if it would not allow me to do what I wanted to do. I have not worked since surgery, but feel confident that I could work if I wanted. I would be a little bit slower, but I could do it.

    Forget about catching old folks. Not going to happen. My original lumbar disc problem started in the military when I moved a woman about to deliver a baby onto a delivery table. Mistake. Have someone help you figure out how you can do some of the things that you need to do, like X-rays. Forget about the transferring, that's what other support people are for. Don't be a martyr. The last thing that you want is another surgery. Get a great physical therapist that can help you figure out what you can do safely and how you can accomplish it with a fusion. Even if you were only fused to the lumbar area, would you be lifting people? I do not think so. My guess is that your employer values your expertise, so work out how you can do your job. Make a list right now on movements that might be a challenge. Someone can maybe help you at the older persons home. Hope that this helps you.

    So, stay away from ugly germs. Stay out of supermarkets with sneezing people, use lots of hand sanitizer and don't put your hands near your mouth.

    I don't have any magic in helping anyone calm nerves. I decided that I needed to have complete faith/trust in my doctor and just let go. Yes, I prayed for peace. Your patients have trust in you, now turn it around. I pasted a picture of my doctor in the back of my phone above the word, TRUST. Maybe that helped me. Maybe spend some time reminding yourself why you chose your surgeon. Because of expertise? Right?

    I wish you the best. Let me know if I can help you. If you want to talk, just let me know.

    Susan..... And girl, get those quads moving now to exercise! Strong quads are your friend.
    Last edited by susancook; 10-20-2013 at 11:00 PM.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

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