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Thread: Considering more surgery and need advice

  1. #1
    Join Date
    Mar 2017
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    Ohio
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    9

    Considering more surgery and need advice

    I am new to the forum. Sounds like my story is familiar here and I would very much appreciate any advice that I can get. I had a spinal fusion with a Harrington rod put in a little over 30 years ago and now have problems with my lower back below the previous fusion. I am considering surgery now because of increased pain and foot numbness. My understanding is that this surgery would involve fusion down to my sacrum and I have some concerns. First off, I was wondering how people fused to the sacrum do, especially one to five years after the surgery. Also, does anyone have any recommendations for surgeons in Ohio, particularly the Northeast Ohio area?

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
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    Quote Originally Posted by OhioSwimmer View Post
    I am new to the forum. Sounds like my story is familiar here and I would very much appreciate any advice that I can get. I had a spinal fusion with a Harrington rod put in a little over 30 years ago and now have problems with my lower back below the previous fusion. I am considering surgery now because of increased pain and foot numbness. My understanding is that this surgery would involve fusion down to my sacrum and I have some concerns. First off, I was wondering how people fused to the sacrum do, especially one to five years after the surgery. Also, does anyone have any recommendations for surgeons in Ohio, particularly the Northeast Ohio area?
    Hi...

    Sorry to hear that you're having an issue.

    The good news about being fused to the sacrum is that most people do relatively well. (After all, you'll no longer have any risk of adjacent segment problems below the fusion.)

    I have a story similar to yours. I had revision surgery 6 years ago. I'm glad I had the surgery, in that I no longer have back pain. I hate, however, the loss of flexibility. I'd give almost anything, to feel normal again. Nonetheless, I'd make the same decision today. So, my only advice would be to not expect perfect.

    I'm sorry, but I don't have any recommendations for a surgeon. Cleveland is actually known as a great place for scoliosis specialists, but they're mostly (or entirely) pediatric surgeons. Hope you find someone good.

    Regards,
    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.

  3. #3
    Join Date
    Jan 2012
    Location
    Yacolt, WA
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    Hi there! I am fused T1-Sacrum. Of course the surgery comes with a loss of some flexibility, the that trade is minor to the loss of pain that the surgery alleviated.

    Best of luck,
    Susan
    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

  4. #4
    Join Date
    Dec 2015
    Posts
    12
    You also sound very similar to my story: Harrington rod placed in 1978 at age thirteen, T4-L4, with increased leg pain and foot numbness about 18 months ago. I had fusion from L2-S1 with Elevate cages (last 2 levels) 3/23/2016. So I have just passed my 1 year post op. Everyone is different, but I honestly have not noticed much less flexibility than what I already was experiencing due to previous fusion and pain. I really do everything the same way as before BUT with much less pain if any at all. I too was concerned about losing what flexibility I did have before surgery. I would personally do it all over again if I needed to make the decision again. I wasn't on pain meds besides Tylenol and aleve before surgery and that is all I ever take now. I TRY to exercise 3 times/week on our elliptical machine because I still favor no impact exercising. Pain doesn't keep me from exercising, lack of motivation does! I am from the Indianapolis area and the surgeon I used specializes in adult scoliosis and problems happening after adolescent scoliosis such as ourselves. For me, the decision came down to quality of life and getting something done while still relatively young.
    Good luck!

  5. #5
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    Northern California
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    Quote Originally Posted by robera2 View Post
    You also sound very similar to my story: Harrington rod placed in 1978 at age thirteen, T4-L4, with increased leg pain and foot numbness about 18 months ago. I had fusion from L2-S1 with Elevate cages (last 2 levels) 3/23/2016. So I have just passed my 1 year post op. Everyone is different, but I honestly have not noticed much less flexibility than what I already was experiencing due to previous fusion and pain. I really do everything the same way as before BUT with much less pain if any at all. I too was concerned about losing what flexibility I did have before surgery. I would personally do it all over again if I needed to make the decision again. I wasn't on pain meds besides Tylenol and aleve before surgery and that is all I ever take now. I TRY to exercise 3 times/week on our elliptical machine because I still favor no impact exercising. Pain doesn't keep me from exercising, lack of motivation does! I am from the Indianapolis area and the surgeon I used specializes in adult scoliosis and problems happening after adolescent scoliosis such as ourselves. For me, the decision came down to quality of life and getting something done while still relatively young.
    Good luck!
    Hi Robera...

    Do you have pelvic screw(s) or bolt(s)?

    --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.

  6. #6
    Join Date
    Apr 2017
    Posts
    1

    Activity limitstProblems with other parts of the body due to Fusion/hardware and rods

    I am new to this site and facing a fusion from T10 to S1. There will be rods implanted in my pelvis. I was highly active and am trying to stay that way despite the constant pain so for now I am active as I can be with the distortions of my thoracic & lumbar spine + a previous cervical fusion from C3 to C6. Will I be able to dance Zumba, walk 4 miles on a treadmill, ride my horse, work out with weights at the gym, garden or even drive my car on the highly packed and crazy S Cal freeways? Also, I am wondering if I am able to go back to these activities that bring me joy will I be faced with further hip, knee or foot problems down the line since I will not have the mobility/flexibility I used to have?

  7. #7
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    Quote Originally Posted by LeanneJ View Post
    I am new to this site and facing a fusion from T10 to S1. There will be rods implanted in my pelvis. I was highly active and am trying to stay that way despite the constant pain so for now I am active as I can be with the distortions of my thoracic & lumbar spine + a previous cervical fusion from C3 to C6. Will I be able to dance Zumba, walk 4 miles on a treadmill, ride my horse, work out with weights at the gym, garden or even drive my car on the highly packed and crazy S Cal freeways? Also, I am wondering if I am able to go back to these activities that bring me joy will I be faced with further hip, knee or foot problems down the line since I will not have the mobility/flexibility I used to have?
    Unfortunately, there's no way of knowing whether you'll be able to do any or all of the things you mention. The fact that you're staying active is definitely in your favor. Patients with T10/11-pelvis fusions are definitely happier with their outcomes than patients with T3/4-pelvis. I would recommend that you talk to your surgeon about the risk of proximal junctional kyphosis. The risk is relatively high. There's a decent amount of literature on the subject. HERE'S one that is of particular interest.

    --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.

  8. #8
    Join Date
    Sep 2016
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    83
    Quote Originally Posted by LindaRacine View Post
    Unfortunately, there's no way of knowing whether you'll be able to do any or all of the things you mention. The fact that you're staying active is definitely in your favor. Patients with T10/11-pelvis fusions are definitely happier with their outcomes than patients with T3/4-pelvis. I would recommend that you talk to your surgeon about the risk of proximal junctional kyphosis. The risk is relatively high. There's a decent amount of literature on the subject. HERE'S one that is of particular interest.

    --Linda
    Linda,

    Dr. Lenke proposed to fuse me from T10 to L3. Should I be worried about this also, PKJ?

    Thanks,
    Melisse
    Melisse
    Age: 42: with 42* Lumbar, 32* Thoracic.
    Diagnosed with Adolescent Scoliosis @ 12 y.o. Thoracolumbar curve was around 28*
    Wore Boston Brace 2 -3 yrs

  9. #9
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    Quote Originally Posted by Kay1974 View Post
    Linda,

    Dr. Lenke proposed to fuse me from T10 to L3. Should I be worried about this also, PKJ?

    Thanks,
    Melisse
    Hi Melisse..

    Yes, although I think it's more common in patients fused to the sacrum. With that said, I wouldn't obsess too much about the issue. The most common serious complication of spinal fusion is degeneration above and below the original fusion.

    Complications are an interesting topic. A complication can be very uncommon (e.g., 1 in 100,000). While that can help you decide whether or not to proceed with surgery, if you're the 1, you're going to be unhappy. Conversely, a complication can be fairly common (e.g, 1 in 5). I don't know about every facility, but I think all of our fusion patients are warned that there is a significant risk of adjacent level issues. If that ever changed anyone's mind, I don't think I've heard of it. Either your pain/disability is bad enough that the risks outweigh the potential rewards, or, it isn't bad enough.

    So, while it's smart to know that there are significant risks when undergoing spinal fusion, getting too involved in understanding all of those potential complications may actually serve to make it harder to make an informed decision.

    --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.

  10. #10
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,691
    I know that everyone is not as happy as I am following surgery 6 years ago with Dr. Lenke (fused T4 to sacrum), but I am more active than most 67 year old ladies. I ride a bike, work out at the gym, tap dance, do zumba, play golf several times a week, work in my flower gardens, etc. It's a tough decision to have scoliosis surgery, but I'm happy I did it.
    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/

  11. #11
    Join Date
    Mar 2017
    Location
    Ohio
    Posts
    9

    Additional surgery question

    Quote Originally Posted by OhioSwimmer View Post
    I am new to the forum. Sounds like my story is familiar here and I would very much appreciate any advice that I can get. I had a spinal fusion with a Harrington rod put in a little over 30 years ago and now have problems with my lower back below the previous fusion. I am considering surgery now because of increased pain and foot numbness. My understanding is that this surgery would involve fusion down to my sacrum and I have some concerns. First off, I was wondering how people fused to the sacrum do, especially one to five years after the surgery. Also, does anyone have any recommendations for surgeons in Ohio, particularly the Northeast Ohio area?
    First off, I really appreciate the replies that I have received and the support of this forum. It is very encouraging to know that I am not alone in this!

    In addition, I was wondering if anyone else has had issues with foot numbness and if that was alleviated with more surgery. Could having more surgery at least keep the numbness from getting worse? So I have increasing numbness in one foot that seams to be accelerating in the past several months. Also, would appreciate any recommendations for spinal surgeons in Ohio that handle this sort of thing.

    Thanks and regards.

  12. #12
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    Maybe we can get a 2 for 1 discount! I am having R leg numbness which has been increasing. I had an EMG done which was described as a "complex study", but did not help in describing what could be done to alleviate the numbess. Guess I will make another appointment for evaluation. Let me know if someone figures out how to help you.
    SUSAN
    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
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,801
    Quote Originally Posted by OhioSwimmer View Post
    First off, I really appreciate the replies that I have received and the support of this forum. It is very encouraging to know that I am not alone in this!

    In addition, I was wondering if anyone else has had issues with foot numbness and if that was alleviated with more surgery. Could having more surgery at least keep the numbness from getting worse? So I have increasing numbness in one foot that seams to be accelerating in the past several months. Also, would appreciate any recommendations for spinal surgeons in Ohio that handle this sort of thing.

    Thanks and regards.
    Foot numbness is really common. I'm not sure if there's any way to know if the damage is permanent, but a neurologist might be able to help. Be sure to let any surgeon know that you have the numbness, and that it's bothersome to you. Try to figure out what parts of your foot are affected.

    https://s-media-cache-ak0.pinimg.com...3c41229b46.jpg

    --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.

  14. #14
    Join Date
    Dec 2015
    Posts
    12
    Quote Originally Posted by LindaRacine View Post
    Hi Robera...

    Do you have pelvic screw(s) or bolt(s)?

    --Linda
    Yup. They are long screws and go across my SI joints. I occaisionally have sharp pain at the end (I think) of the right one - today I felt some pain there for the first time since January, so it is not consistent. I was prom shoe shopping after church with my daughter and I think I am lucky I only felt pain there! LOL

  15. #15
    Join Date
    Dec 2015
    Posts
    12
    Quote Originally Posted by robera2 View Post
    Yup. They are long screws and go across my SI joints. I occaisionally have sharp pain at the end (I think) of the right one - today I felt some pain there for the first time since January, so it is not consistent. I was prom shoe shopping after church with my daughter and I think I am lucky I only felt pain there! LOL
    I have X-rays , but not sure how you load them here. I just looked at my films again and they definitely look like screws. I have a copy of my op report somewhere here in my office. I can't remember if the surgeon specifically mentioned what he used.

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