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Thread: considering being fused to my sacrum I need advise!!!!

  1. #1
    Join Date
    Nov 2011
    Location
    Utah
    Posts
    59

    considering being fused to my sacrum I need advise!!!!

    Hello,
    My name is Annabelle and I have been reading this forum for a while now. But I need to have some people let me know how their surgery went before I drive myself crazy trying to make a decision. I am 31 years old with scoliosis and I had my first surgery when I was 15. Since then it has not bothered me much til the last few years. But this last year my lower back has been killing me to the point I was stuck in bed for at least 6 months. I didnt have insurance so I couldnt see a Doctor. Well I finally got insurance a few months ago and saw a orthopedic surgeon. He took xrays and I had a mylogram done as well. He said that I needed surgery because my rod had broken at the bottom due to the bone never fusing at the bottom and the rod isnt meant to hold that much pressure. I have a antieor single rod in the mid area of my back right now. He said the few vertabres left at the bottom were leaning overlike they we tipping over to the left and that he would need to fuse me down to my sacrum. And that if I didnt have the surgery I would be in a wheelchair in 3-4 years! So that scared me. And then he took it back and said he never said that. But my case is really rare. He said he will have to go thru my sidie and take out 2 of the screws in my spine that are broken.
    Then do a second surgery to fuse the rest of my lower spine down to my sacrum. I am afraid I wont be able to sit and do thing like a normal person again with that fusion. Granted I know that some mobility will be taken but how much? I am afraid that I will go thru with this surgery and be in major pain for months to have it not help with my back pain and I am worse off. So I am waiting to have the surgery in Jan. after Christmas.....maybe. I really dont want to have it. But it looks like I do. Help me calm down about this. I keep myself up at night worrying about what decision to make. And what will the process be like if I do go thru with it.
    Last edited by annabeller; 11-16-2011 at 04:53 PM.

  2. #2
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,531
    Hi Anna

    Welcome to the forum.

    Check out the mobility thread in my sig, there are pics and hopefully a little comic relief....

    I am doing well and Iím pain free. Since you are pretty much in trouble with your lower levels, there really isnít much choice but to have it done. Even though we are pretty tough and can handle high amounts of pain, it really isnít worth it. If I would have known, I would have had my surgeries done 10-15 years sooner.

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,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

  3. #3
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    I'm also fused to the sacrum. While it doesn't feel 100% natural (neither does the disability you're experiencing now, I'm sure), it's far less disabling than it sounds. It seems to me that if you're as disabled as you say, the decision should be a relatively easy one.

    --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
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    2.5 years ago I was fused to sacrum with pelvic fixation. I am pain-free and can do anything I want. I wouldn't have it any other way considering how I was before surgery.

    Don't be afraid of being fused to sacrum. There will be some minor awkwardness doing some chores, but it's going to give you your life back with hopefully, no more surgery in your life-time. (Something we all hope for.)
    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

  5. #5
    Join Date
    May 2009
    Posts
    3,745
    hi Anna
    i need fusion to sacrum as well, and have gone back and forth with a decision....for medical and
    personal reasons...
    you have my sympathy about how hard the decision can be to make, even when one is in pain and
    suffering....what we know is always easier to deal with than the unknown...
    (that phrase about "the devil we know...")

    i sent you a private message...
    welcome to the forum...

    jess

  6. #6
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Welcome to the forum. The first item you need to address is a second opinion before you do any surgery. You, also, need to have a surgeon that you feel
    comfortable with
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  7. #7
    Join Date
    Jun 2011
    Location
    South Jersey
    Posts
    133
    Welcome to the forum - you're story sounds so similar to mine especially with going back and forth trying to make a decision. After seeing 4 specialist for opinions (Yes, i saw 4 ortho spine doc praying somone would say i didn't need surgery - but no luck), crying praying and talking it over, i finally decided to have the surgery in January 2012 (2-stage operation 1 week apart). So you are not alone - there are alot of us on here going thru the same things - - i hope you find comfort here in this forum as it has been a great source of support for me! I would agree with the previous poster who said to get a 2nd opinion (or 3rd...) - you have to find a doctor you feel really comfortable with and one who has experience with this - and you have to find one who feels confident he can and will give you the very best outcome possible! I wish you the best - this decision is really difficult and having just recently made mine, i feel for you - - - take your time deciding though - ask a lot of questions and you'll know when you've found the right doctor and you'll know when it's the right time to move forward - - my catalyst was pain. I'm scheduled Jan24 and Jan31 - and at this point, i'm looking forward to moving forward - so that i can start to feel better...i wish you the best....

    Michele
    1993/1995: PSF w/ Harrington rods T3-L4
    Jan. 24, 2012: ALIF of L4-L5, L5-S1 w/ cage spacer and BMP
    Jan. 31, 2012: PLIF of L1-S1 w/ pelvic anchors
    Scheduled Nov.15, 2012: Fusion T2-S1 w/ pelvic anchors to fix T12 fracture
    http://i31.photobucket.com/albums/c3...ot/myback2.jpg - BEFORE
    http://i31.photobucket.com/albums/c3...CT2342x406.jpg - AFTER
    http://i31.photobucket.com/albums/c3...CT1410x229.jpg - AFTER
    www.jerseyot.blogspot.com

  8. #8
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416

    Red face Sunny

    Hi
    I agree that you need to get a second and even a third opinion on surgery. One must be comfortable with the
    decision and with the choice on surgeon before going forward. I have been fused to the sacrum for 2.5 years
    and can do most anything except heavy lifting, and running. I am pain free and work full time. There are
    many on this forum that are fused to the sacrum and have had successful surgeries...read more and do
    some research. This is a great place!
    May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

    March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

    January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

  9. #9
    Join Date
    Nov 2011
    Location
    Utah
    Posts
    59

    No idea what I'm doing weeeeee

    Michele[/QUOTE]

    Thank you so much for your answers. I have been to two orthos and I am comfortable with
    My surgeon. What I don't understand is I will be at a lever 9 in pain and bedridden for months then it will go away for a few months. Has that ever happened to you? Now I think I am just overreacting.
    But I have broken hardware in me and my bottom vertebraes are tipping over on the,selves.
    It's been this way for a few years but I wonder if I can just take pain pills
    The rest of my life. Lol I just don't want to be in that pain again. The first one
    Hurt so badly I don't want to ever experience again. And what if it doesn't help the pain.
    I hear story's that the pain gets worse sometimes. Ahhhh I'm so torn

  10. #10
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Annabelle,
    I was fused to the sacrum at age 67. It was a tough recovery at my age, but if I can do it, you can do it also. I was able to go back to rollerskating, gardening or almost anything I wanted to do. To be honest, I still have some pain, but nothing compared to before surgery. I was very close to being in a wheelchair and that was not an option for me. You will not be spending months in bed with severe pain. They get you up and walking the day after surgery and before you know it, you are climbing stairs and learning how to take care of yourself once you get home from the hospital. Gradually the pain gets less and less and you can cut back on the pain medication. Pain control is much better than it was when you had your original surgery. I was off all narcotics by three months post-op and the only thing I take for pain now is gabapentin and occasionally Tylenol. The decision for me to have surgery was easy because of so much pain. I was scared and nervous, but I would do it again in a heartbeat if I had that awful pain again. I am sorry you have to suffer so much at such a young age.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  11. #11
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Sally makes a good point in that the surgery skills today are far better than when you were 15 as is the hardware and the pain medication. I hope knowing that is enough to make you feel better. So long as your surgeon has a lot of experience in doing the surgery that you need, I believe you have an excellent chance of having a very good outcome.

    PS have you read this book? Scoliosis Surgery: The Definitive Patient's Reference by David Wolpert
    The knowledge it contains will help you feel more at ease with your decision.

    Best of luck!
    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

  12. #12
    Join Date
    Nov 2011
    Location
    Utah
    Posts
    59
    Ya I read the scoliosis book. It was very informative. Ya you guys are right I should just get it done with. So I can start living again. You guys are awesome I am so glad I found you all. No one understands me and my friends disappeared once I couldn't go bar hopping anymore but oh well

  13. #13
    Join Date
    May 2010
    Location
    NJ
    Posts
    70
    Hi Anna, I am fused to sacrum, I am also 68, the best thing I did, no pain and I could not stand upright without support, I used a cane for 1 1/2 years. My surgery was in May and June, I went back to work as hairdresser 3 days week, Now in Oct I felt a pop in my back and I have a old rod broke at the top of my back, He said I did nothing to make that break, they just do sometimes, I am having surgery after Christmas to replace the 2 old rods. and there is a good amount of pain when they break. Good luck get yourself a good Dr. and you will do good. Lu

  14. #14
    Join Date
    Nov 2011
    Location
    Utah
    Posts
    59
    Thanks guys. That makes me feel a little better. Its just going to be so hard with two little boys and healing. I am worried since I am only 31 am I going to need more surgeries after this too. Has anybodys doctor gone thru the side to remove part of the rod and then thru the back to fuse to sacrum? I just feel alone. And my family doesnt seem to think this is a big deal. they wont talk with me about it.

  15. #15
    Join Date
    Jun 2011
    Location
    South Jersey
    Posts
    133
    Annabeller - i just sent you a PM
    1993/1995: PSF w/ Harrington rods T3-L4
    Jan. 24, 2012: ALIF of L4-L5, L5-S1 w/ cage spacer and BMP
    Jan. 31, 2012: PLIF of L1-S1 w/ pelvic anchors
    Scheduled Nov.15, 2012: Fusion T2-S1 w/ pelvic anchors to fix T12 fracture
    http://i31.photobucket.com/albums/c3...ot/myback2.jpg - BEFORE
    http://i31.photobucket.com/albums/c3...CT2342x406.jpg - AFTER
    http://i31.photobucket.com/albums/c3...CT1410x229.jpg - AFTER
    www.jerseyot.blogspot.com

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