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Thread: Why I didn't fuse, and what the new plan is

  1. #1
    Join Date
    Dec 2008
    Location
    Huxley, Iowa
    Posts
    190

    Why I didn't fuse, and what the new plan is

    Hi all,
    I figured I would make another thread for this, because it seems like several people want to know why I am in the situation I am in, and how to avoid it. I had my CT and myelogram today at the Twin Cities Spine Center and also saw Dr Transfeldt for the second time. Here is what I learned:

    For those who don't know my history, I had 2 laminectomies/ tethered cord/lipoma removal surgeries, one at age 2, one at age 20. I had my t-10 to pelvis fusion in November and December of 08, the titanium rods broke and I had a revision in November of 09 with vitallium rods, said to be 1.5 times stronger than the titanium ones. Adding to the complications I had a deformed sacrum, as well as a hemi-vertebrate. Post surgery I was told to walk 10 to 15 miles per day (at least to work up to it), and I did, I believe I reached the 10 mile mark about 4 to 5 months out of the posterior surgery. I had tons of problems with braces and shoe lifts with the first surgery. I have been wearing a 2 cm shoe lift from the time of the original posterior surgery on. I had pretty much NO luck in trying to convince my surgeon that I had broken my rods again, and his office has been AWFUL with returning calls. I have since switched my care to the Twin Cities Spine Center, after consulting with another local surgeon and not feeling very confident in him. I am roughly 4 hours from the TCSC. I just found out that I am allergic to most pain medication, and have gone from hydromorphone to nothing recently. BMPs were used during all three fusion procedures (anterior, posterior, and revision). I also have one "cage" in at L5/S1. After the revision, I used a spinal stimulator to try to achieve more bone growth.

    I think thats a pretty good overview, but if I missed something I am sorry. I am on a pretty big dosage of benedryl at the moment.

    Today it was confirmed that I am only fused solidly at L5/S1. My rods are broken at L4/L5 so there is a non-union there, I also have non unions at L3/L4, L3/L4, most likely L1/L2, L1/t12, and possibly t11/t10. So, pretty much everything but L5/S1.
    Another issue that came up is that my tethered cord is still tethered, we were under the impression that it was not. One thing that was mentioned is that it is a possibility that the tethered cord might be adding stress to the fusion and possibly causing some of the issues, however it would not cause all of it, especially the upper non-unions.

    The extreme amount of walking and biking I was told to do was not the reason that I had a non-union, but it did probably contribute to the rods breaking so quickly each time. Since everything is still un-fused, even the parts that held, there is something else going on.

    I was told I had a leg length discrepancy of 2cm and have been wearing a shoe lift for the last few years. After taking xrays with and without the lift today, it appears that my midline becomes slightly more "off" when wearing the lift, though it didn't make a ton of difference either way in the xray. It appears I never really needed a lift afterall.

    It sounds like the fusion was done, for the most part, correctly, but that it is possible that the area wasn't "prepared" the way it should have been. As Dr T put it, "you can't just splash some BMPs all over the place and expect it to grow where you want it to".

    I was told once by the surgeon that I had so many problems with (that did the fusion and revision) that the popping and grinding I was feeling was not from broken rods, but that I had "too strong" of bones and since my pelvis wasn't allowing the flexion that a normal pelvis would, the bolts were chipping out some bone fragments, eventually it would chip out enough to move freely and no longer cause problems. This was untrue. It was the broken rods that were missed on the xray popping and grinding

    So all that leads up to, I had too much going on for the amount of work that was done. The area wasn't prepared well for fusion, the rods broke early because of the amount of walking. The lift didn't do any good, but probably didnt do much in the way of negatives either.


    The new plan:
    anterior/posterior procedure, posterior will be first to check all of the screws, but it appears from all of the films that they are in good shape. Then they will prep everything, clean everything off, and assess the areas in terms of the amount of fusion that occurred. They will put in new rods, and possibly more screws, since I do have a gap. There is apparently an alloy that is stronger than vitallium, they will be using that. After that, depending on the amount of work that needs to be done, they will do either a minimally invasive or a full anterior/side procedure with XLIF in each of the non-unions that require it. Depending on how long the posterior surgery is and how complex the anterior/lateral surgery it will either be done in two parts, roughly 4 days apart, or on the same day.


    Anyhow, that is pretty much it. Hope that clears up some questions.
    25 years old
    double 70+ degree curves before surgery
    Anterior on 11/11/08
    Posterior on 12/2/08 with titanium rods
    nearly perfect correction
    fused t-10 to pelvis
    with a hemi-vertebral osteotomy at L4

    Broke right rod at L4-L5 on 06/26/09
    Broke left rod on 10/24/09
    Revision surgery on 11/5/09 with vitallium rods
    Broke both rods again

    Had posterior than anterior revisions on 03/11 at the Twin Cities Spine Center
    Declared "FUSED" on 12/6/11

  2. #2
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,557
    Wow Fierce!

    Its hard to believe how many of your levels didn’t fuse. Anyway, your pointed in the right direction...

    I have a feeling that my surgeon trained under yours, years ago. Dr M spent many years at Twin Cities.

    Be sure to keep us posted, this is valuable information.
    Ed
    49 yr old male, now 59, the new 55...
    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
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    It sounds like this guy knows what he's talking about and you feel confident in him. Am I correct in assuming that had the area been prepped correctly for the bmp, you might have avoided the revision and this next surgery?

    You have handled this like your namesake, I am so impressed. So sorry you need this third surgery, but it sounds like this surgeon is thorough, has sorted out the problems and has explained things to you very well.

    Do you have a date yet for this new surgery? I hope you don't have to wait too long. You've been through so much. But I think you're going to get there in the end!
    Last edited by JenniferG; 02-12-2011 at 12:03 AM.
    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

  4. #4
    Join Date
    Dec 2008
    Location
    Huxley, Iowa
    Posts
    190
    Thanks Ed! I'll be sure to keep everyone up to date!

    Jennifer- He can't say for sure that it would have spared me the revision and all, but it seems like it was a factor that did not help. He did say BMPs are wonderful, but they aren't the 100% miracle that some surgeons treat them as. They are just a tool, and if used incorrectly, they don't work as well.
    25 years old
    double 70+ degree curves before surgery
    Anterior on 11/11/08
    Posterior on 12/2/08 with titanium rods
    nearly perfect correction
    fused t-10 to pelvis
    with a hemi-vertebral osteotomy at L4

    Broke right rod at L4-L5 on 06/26/09
    Broke left rod on 10/24/09
    Revision surgery on 11/5/09 with vitallium rods
    Broke both rods again

    Had posterior than anterior revisions on 03/11 at the Twin Cities Spine Center
    Declared "FUSED" on 12/6/11

  5. #5
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Dear FLT-- so good to hear that you have a surgeon that knows what to do and you are going to finally get some resolution (and relief!) to your problems! I'll be looking forward to hearing when the date is set and you can start your recovery again. I've always admired your determination-- even way back when it was when you were walking soooo much every day! Take care.
    66 and still heartbroken...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  6. #6
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    You certainly have been through quite the ordeal. It sounds as though you've got your answers now so hopefully things will turn around for you. You definitely deserve it!
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  7. #7
    Join Date
    Jan 2011
    Posts
    197
    If it gives you any additional encouragement, I asked my ortho friends (docs) about TCSC and they ONLY do very complex spine surgeries - sounds like you are in the best place to finally get some relief.
    Female, age 38
    4 years of bracing, concluded at 42*upper/38*lower
    currently 64*upper/40*lower
    Fused T3-L4 on Feb 23 2011
    now 32*upper/18* lower

  8. #8
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Fierce--
    That explanation is amazing. I've followed your progress and lack of for as long as I've been on here and I didn't realize all the early things you've had done. These guys at Twin Spine Center certainly seem to know their stuff, thank goodness. Sending you lots of luck and prayers to finally get this resolved!
    Everyone--
    Yes, her name does say it all. We live very close and met for coffee a few weeks ago and she's just a sweetheart and a real trooper considering all of this at such a young age! Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  9. #9
    Join Date
    Dec 2008
    Location
    Huxley, Iowa
    Posts
    190
    Thanks all! I really appreciate the sentiments!
    Janet, you are so sweet! I really enjoyed meeting you for coffee! I truly admire you! Hopefully we can meet up again!
    25 years old
    double 70+ degree curves before surgery
    Anterior on 11/11/08
    Posterior on 12/2/08 with titanium rods
    nearly perfect correction
    fused t-10 to pelvis
    with a hemi-vertebral osteotomy at L4

    Broke right rod at L4-L5 on 06/26/09
    Broke left rod on 10/24/09
    Revision surgery on 11/5/09 with vitallium rods
    Broke both rods again

    Had posterior than anterior revisions on 03/11 at the Twin Cities Spine Center
    Declared "FUSED" on 12/6/11

  10. #10
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    That would be great! Love to see you especially after you get the surgery to fix all the problems! Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  11. #11
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    How nice that you two got together for coffee. Keep us up to date Fierce, we want to know how you're doing. Hope it all goes smoothly for you!
    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
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Hi,

    I am so happy for you. It seems that after all this time, you've finally got too the right doctor. It sounds like this guy really knows what's going on. Good luck, and be sure to let us know your plans.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  13. #13
    Join Date
    Dec 2008
    Location
    Huxley, Iowa
    Posts
    190
    Hi All,
    I just got my surgery date! The co-surgeons were booked further out than we thought, so I have a little over a month wait, but I am ecstatic to have something to count down to.
    March 30th it is!
    25 years old
    double 70+ degree curves before surgery
    Anterior on 11/11/08
    Posterior on 12/2/08 with titanium rods
    nearly perfect correction
    fused t-10 to pelvis
    with a hemi-vertebral osteotomy at L4

    Broke right rod at L4-L5 on 06/26/09
    Broke left rod on 10/24/09
    Revision surgery on 11/5/09 with vitallium rods
    Broke both rods again

    Had posterior than anterior revisions on 03/11 at the Twin Cities Spine Center
    Declared "FUSED" on 12/6/11

  14. #14
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Fierce--
    I am sooooo happy for you! I was hoping when I saw your post that it was good news for you! That's terrific. I think you'll be in much better hands now. I just
    reread--March 30th was my date also 2 years ago! A good sign. This is just wonderful. Let me know if there's anything I can do for you. Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  15. #15
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Glad you've got a date! March will be a busy month around here. Just out of curiosity, why will you be having posterior surgery first and then anterior? I'm still new at all of this but am trying to learn what's what.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

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