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Thread: Fifth Surgery Soon

  1. #1
    Join Date
    Jun 2005
    Location
    Bloomfield Hills, Michigan
    Posts
    285

    Fifth Surgery Soon

    Gosh, is there anybody still here that I know? Hi again. I have been on and off this forum since my first surgery in 2000. Long story short, I have had saggital imbalance since after my second surgery, it was not adequately fixed in the third and fourth surgeries, and has been getting progressively worse with extremely poor prognosis.

    Last June I saw Dr. Lenke in St. Louis and I was SO impressed with him. I'm scheduled for two-stage surgery in March. I will be one week in hospital and one week in rehab. Having been through surgeries before, I kind of know what to expect, but being out of town for the surgery for two weeks is what’s worrying me right now. The two people who have been my primary caregivers cannot go to St. Louis with me. I have a sister and a brother who may be able to be with me for part of the time. Neither one of them is a very experienced traveler (or caregiver) so right now I’m trying to figure out all the logistics for them. I will have them stay at the Parkway Hotel because it’s so convenient.

    Having been through so many surgeries, among other things the thought of traveling home just two weeks after surgery is daunting to me. The flight is about 1.5 hours, and I’m worried about how someone will be able to manage me in a wheelchair, the luggage, and the airport hassles.

    There’s quite a few of you who have had recent surgeries with Dr. Lenke. My pre-op is in 2.5 weeks and I’m allowing extra time to search everything out while I’m there. I would appreciate any tips or suggestions you may have. I want to organize the trip for my caregivers so I can concentrate on my surgery and not worry about them. We can correspond on the forum or via private email if you prefer. Thanks for any advice you can offer.

    P.S. Dr. Lenke is using me for a video tutorial because my case will be “interesting.” I figure he will be extra careful that way, no “oops” allowed on video!
    FeliciaFeliciaFelicia
    10/24/00 posterior fusion T4-L4 at age 57
    8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
    5/14/07 posterior revision with fusion to sacrum
    2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
    3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

  2. #2
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Hi Felicia! I can't help you with your questions, but I'm sure others can. I just wanted to say hi since I do remember you well-- and that I'm so sorry you are having problems still and need further surgery. It sounds like you will be in excellent hands and this should be the last one you'll need. Take care-- and keep us posted.
    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

  3. #3
    Join Date
    Jun 2005
    Location
    Bloomfield Hills, Michigan
    Posts
    285
    Hi Susie, good to hear from you! How are you doing?

    It definitely will be my last surgery. Dr Lenke is either going to fix me or not, although I have a lot of confidence in him. I do wonder if I'm pressing my luck, because I have not had lumbar pain since my last surgery. My thoracic and cervical areas are another story, not to mention my thighs, legs, knees. Definitely experiencing the flatback effects.
    FeliciaFeliciaFelicia
    10/24/00 posterior fusion T4-L4 at age 57
    8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
    5/14/07 posterior revision with fusion to sacrum
    2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
    3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

  4. #4
    Join Date
    Jan 2006
    Location
    near Philadelphia
    Posts
    1,260
    Hi Felicia -- I'm also sorry to hear you need another surgery but I'm sure you'll do great with Dr. Lenke. From what I've observed, he seems to be getting better and better with this stuff. You're very brave. Best of luck to you!
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

  5. #5
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Felicia-- I'm doing fine: back to work and all that. I should update my pictures sometime. I just lost 45 lbs. and am feeling pretty good. All my family (3 daughters, their hubbies, and two grandsons) was here for Christmas (for a week) and I was able to manage that fine, so I think I'm doing well. I have two twenty month old grandsons (born a week apart) and that made our time so much fun!!! I have some limitations (am not like some who seem to be able to do whatever they want) but all in all, I feel like I'm doing great. I'll turn 60 this month, but don't feel like it. I'm really glad I had my surgery. I sure hope and pray your surgery will go well and your troubles will be over soon.
    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
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416

    Red face

    Hi Felicia,
    I had a sagittal imbalance too after my first surgery. I had pain in all the areas you do, but not in my lumbar after the initial surgery. The flatback as you say puts so much stress on your hips, knees and legs and also on your neck because your body wants to compensate to get in that upright position. It is so fatiguing. I so hope Dr Lenke can help you as I was helped in my revision surgery. Are you having an osteotomy? In my opinion that is the trick in fixing a sagittal imbalance. I did not have to travel, so I cannot help you in that regard but hopefully others can. Good luck...you are in good hands ;-)))
    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.

  7. #7
    Join Date
    Dec 2009
    Location
    NC
    Posts
    791
    Hope all goes well.

    You will be in my prayers

    Melissa

  8. #8
    Join Date
    Jun 2005
    Location
    Bloomfield Hills, Michigan
    Posts
    285
    Thank you friends, old and new, for your good wishes.

    Chris, good to hear from you. As I said, Lenke really impressed me - no nonsense, very honest, very decisive. There was no waffling on his part that I needed the surgery.

    Susie, so glad to hear you're doing well. We all know we have some limitations, but it's so much easier to tolerate than pre-surgery. I too spent the holidays with lots of family, and the adorable little kids are so much fun during that time!

    Melissa, thank you. I'm grateful for all the prayers I can get!

    Naptown, you are so right about all of that, especially the fatigue. Yes, Dr. Lenke will be doing an osteotomy at L3. I have had osteotomies in previous surgeries but for whatever reason I still ended up with flatback. I wish I had the sense to seek out a revision specialist after my second surgery when the flatback first showed itself, but I think I was thrown off because two different consultations with surgeons told me I was not fused and that was why I wasn't able to stand upright. Oh well, what's done is done.

    I hope I can still hear from someone who had to travel to STL for surgery with Dr. Lenke.

    My best to all ...
    FeliciaFeliciaFelicia
    10/24/00 posterior fusion T4-L4 at age 57
    8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
    5/14/07 posterior revision with fusion to sacrum
    2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
    3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

  9. #9
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Felicia--
    I did have surgery with Dr. Lenke and traveled about 7 hours from home. We drove 3 plus hours first day and stayed at motel and did the same next day. This was with stops every 1 1/2 --2 hours. My husband said he thought he'd never get me out of St. Louis since he had to keep stopping to find a sort of comfortable position for me even though we had the seat flat down. Then I was drugged up enough I slept almost all the way both days. It worked for us but you have a lot farther to go. I don't know if this helps you too much. At least you know you've got a great doctor! 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.

  10. #10
    Join Date
    Jun 2005
    Location
    Bloomfield Hills, Michigan
    Posts
    285
    Hi, Janet -
    Thanks for the info. It's about what I suspected re car travel and in fact Dr. Lenke recommended that I fly (first class).

    I'm curious - did your husband stay with you the whole time? Where did he stay? Did you do rehab in St. Louis? How long in total were you in St. Louis?

    Thanks again.
    FeliciaFeliciaFelicia
    10/24/00 posterior fusion T4-L4 at age 57
    8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
    5/14/07 posterior revision with fusion to sacrum
    2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
    3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

  11. #11
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Felicia--Yes, he stayed basically the whole time with me in the hospital--8days. He had a motel room he went back to now and then to shower, etc. etc. He was usually there at night. I think it was just a Red Roof Inn--he was barely there. I was then in the rehab unit it's a few blocks away for another 8 days. Then I had a roommate and of course he didn't stay nights then. Hope this helps a bit. 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.

  12. #12
    Join Date
    Jun 2005
    Location
    Bloomfield Hills, Michigan
    Posts
    285
    Thanks, Janet. You just gave me a few more questions for my list when I'm there for pre-op in two weeks!
    FeliciaFeliciaFelicia
    10/24/00 posterior fusion T4-L4 at age 57
    8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
    5/14/07 posterior revision with fusion to sacrum
    2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
    3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

  13. #13
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    I just reread what I wrote and realized it sounded like my husband was at the motel at night--not so! He was almost always in the hospital with me. It seems nights were always the worst. He went to motel one night and I had a terrible night. You really want someone there to advocate for you when the pain meds aren't coming. Thought I'd better clear that up! 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.

  14. #14
    Join Date
    Jun 2005
    Location
    Bloomfield Hills, Michigan
    Posts
    285
    Janet - Does that mean he stayed in your room with you at night? I thought I saw something like that somewhere, that your caregiver could stay with you. Do you know if that was dependent on your insurance coverage?

    And as far as your time in rehab - do you think you could have handled that time without someone there? Someone is better, of course, but I may not be able to have someone with me.

    Sorry to ask so many questions, but I'm anxious about this out of town venture ..... Thanks!
    FeliciaFeliciaFelicia
    10/24/00 posterior fusion T4-L4 at age 57
    8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
    5/14/07 posterior revision with fusion to sacrum
    2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
    3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

  15. #15
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Just checked with my husband--he could stay since it was a double room but no one was else was in there. That might not always be the case. My insurance was OK with it. I would check this out with Kelly. At rehab there was another patient from another doctor who had had similar surgery--guess "roommate" wasn't quite the right word. He or one of my daughters were with me most of the time during the day. I think I must have been able to handle the nights better during that time. It's all sort of a blur actually! 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.

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