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Thread: 5+ Years Out and WORSE!

  1. #1
    Join Date
    Feb 2005
    Location
    Dayton, Nv
    Posts
    61

    Unhappy 5+ Years Out and WORSE!

    I am finally going to make an appt to see my Ortho doc after about 3 years. Yes, my lateral curve is better due to the monstrous surgery and recovery, but now I'm struggling to stand straight from front to back. I can't walk any distance in comfort without the support of a cane, shopping cart, my hubby's hand etc. And for the last 2 years or so the area above my original surgery (t-5 to one above the sacrum..L4?) I've forgotten the lingo after all this time..) has gotten much worse to the point that I have to struggle to hold my head erect, thus putting strain on my upper back and causing pain and making me feel much more deformed than I ever was. At 58 years old and prone to depression and anxiety anyway, this is really getting me down. I have joined Curves and am excercising regularly to try to get my muscles to support me. So far I have lost almost 8 pounds in 7 months (I'm now 5'1/2 and 120 lbs) and the rest of my body is looking and feeling better, but my back and neck are just hurting more. I just feel like crying. I guess the only reasons any of us would go through this huge surgery is to A. Be rid of random/constant pain and B. To look more "normal." I have traded one pain for the other, and I am more deformed than I ever was.
    Thanks for letting me vent. I am sad tonight and wanted to share it with those who might understand.

    Sharona
    Singing the Blues
    Female 1951
    A/P Surgery Oct 13th & 17th '05, from T7-L5, 46 degree curve reduced to 19 degrees. Rib hump almost gone, no major complications.. but I now have kyphosis above the surgical area and went from 5'2" to 5' 1/4. I plan on a revision surgery with Dr Menmuir in Reno, Nv on October 13, 2010.

  2. #2
    Join Date
    Oct 2009
    Location
    PA
    Posts
    798
    Sharon,

    I'm so sad to read your story - and frightened too. On this forum we more than empathize. We really DO feel what the other feels, if not now, at least in imagination for ourselves, as well.

    Yours is one of the bad case scenarios we fear - especially long-time fence sitters like me. I just reread some of your earlier posts and felt sad for you back then (2007) already feeling much of what you just described.

    I can only offer an uninformed opinion. It sounds as if you are experiencing the so called "poor sagittal balance" outcome occurring when the recreated lordosis of the lumbar spine was lost post surgically or was never properly accounted for.

    I could be all wet here, but so it sounds to this untrained ear. I believe it is fairly common (should I say, "all too common?" ) and can be corrected in a revision surgery much easier than the original.

    So sorry for your pain and disappointment. but glad you're finally talking about it! (PLEASE - no apologies for "venting! HAHA) It's a crapshoot from the start - even Lenke tells his pts there's a ten % chance they'll feel more pain afterwards However, we who decide to proceed, evidently become convinced it's worth the risk because the odds favor a good outcome - that is, mere improvement.

    Sucks!

    Personally, I"m still in a state of shock from being told at my first appts (March) by two of three surgeons that there was a likelihood/certainty of further surgery down the road. Now, I can't - firmly - decide, even though I can hardly walk outside my house - lots of leaning! - even with a walker. And lots of pain.

    Best of luck and a hug.

    Amanda
    Last edited by Back-out; 06-05-2010 at 04:24 AM.
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  3. #3
    Join Date
    Oct 2009
    Location
    PA
    Posts
    798
    PS I'm very excited to hear you're able to exercise at Curves! (Not that I know just what they do...)
    And great on you for taking charge of this thing you CAN do to make yourself feel/look better.

    With that attitude, proneness to depression and all (I call this "reactive depression"!) you'll manage what Fate has dished out. Somehow. Having a husband helps - you may be luckier than you realize overall.
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  4. #4
    Join Date
    Sep 2007
    Location
    Geneseo, NY
    Posts
    133
    Hi Sharon,
    I am so sorry for your pain. Curves is a good gentle way to get moving, but have you worked with a physical therapist? I believe you could get more relief through PT.
    1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

  5. #5
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Sharon--it's been awhile and I've often wondered about you-- you were so encouraging to me when I first joined. Since you haven't been on the forum, I figured "no new is good news" -- wrongly. Although I did wonder about the kyphosis problems you had spoken of. I'm so sorry to hear about your problems!

    I am glad you are seeing your ortho. If he does not help you to your satisfaction, please see another SRS doctor who deals with revisions, as it sounds like that is what you may need. Life is too short and precious to spend it in misery. Keep us posted on what's happening and how you're coping-- and vent away to us all you want. We DO understand will listen. Hugs, dear scoli sis-- your friend, Susie
    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
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Thank you for writing about this. For those of us still trying to make a final decision about surgery, it's definitely good to hear about both postitive and negative results. So, bring on the venting!

    I've been reading obsessively about all of this, and I do think what you've described sounds like what Back-Out talked about. You might want to email naptown78. She just had a successful revision surgery; though I'm not sure if the problem was the same.

    Also agree on the P/T; it has helped me enormously with scoli pain after each pregnancy.

    Best wishes,
    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  7. #7
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,801
    Quote Originally Posted by Sharon C View Post
    I am finally going to make an appt to see my Ortho doc after about 3 years. Yes, my lateral curve is better due to the monstrous surgery and recovery, but now I'm struggling to stand straight from front to back. I can't walk any distance in comfort without the support of a cane, shopping cart, my hubby's hand etc. And for the last 2 years or so the area above my original surgery (t-5 to one above the sacrum..L4?) I've forgotten the lingo after all this time..) has gotten much worse to the point that I have to struggle to hold my head erect, thus putting strain on my upper back and causing pain and making me feel much more deformed than I ever was. At 58 years old and prone to depression and anxiety anyway, this is really getting me down. I have joined Curves and am excercising regularly to try to get my muscles to support me. So far I have lost almost 8 pounds in 7 months (I'm now 5'1/2 and 120 lbs) and the rest of my body is looking and feeling better, but my back and neck are just hurting more. I just feel like crying. I guess the only reasons any of us would go through this huge surgery is to A. Be rid of random/constant pain and B. To look more "normal." I have traded one pain for the other, and I am more deformed than I ever was.
    Thanks for letting me vent. I am sad tonight and wanted to share it with those who might understand.

    Sharona
    Hi Sharona...

    I'm sorry to hear about your outcome. If your surgeon doesn't offer any help, please consider seeing a surgeon who has a lot of experience in treating patients with prior fusions. I hear all to often that surgeons tell their patients there's nothing to be done about it. There's almost always something that can be done, and there's no reason why you should have to live with a stance that is far less than perfect.

    Good luck!

    Regards,
    Linda

  8. #8
    Join Date
    Feb 2005
    Location
    Dayton, Nv
    Posts
    61

    Talking You Are All So Wonderful!!!

    If I were more social, I would hang out here more often!!

    More wonderful people do not exsist anywhere on the planet! And people who understand "Us" well...you all know how rare that is.
    I have not even thought about revision surgery....REALLY!! I guess once one goes through the initial trauma, and lives through it, we consider ourselves lucky no matter what. I always said I just hoped I wouldn't be permanently paralyzed...preferring death, as if I know what the hell THAT means. Now, as awful as a "re-do" seems, maybe my inability to walk upright for the rest of my days is even more horrific an idea than another surgery. Unbelievable!!! I'm sure my husband will be amazed if I even CONSIDER it, but then, he can't really believe that I'm as impaired as I am. I think it just hurts him too much to believe that I really can't do the simple things I could before.
    Thanks again for taking time out to give me your valued opinions and support. You know how much it means.
    Singing the Blues
    Female 1951
    A/P Surgery Oct 13th & 17th '05, from T7-L5, 46 degree curve reduced to 19 degrees. Rib hump almost gone, no major complications.. but I now have kyphosis above the surgical area and went from 5'2" to 5' 1/4. I plan on a revision surgery with Dr Menmuir in Reno, Nv on October 13, 2010.

  9. #9
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416

    Wink

    Sharon
    Your problems with standing up straight and how you are dealing with it sound EXACTLY like what I was dealing with before my revision surgery 2 1/2 months ago. I could not stand up straight almost immediately after my original surgery in '08. I had to use shopping carts, walls, hubby's hands too to walk, and eventually had pain in my upper back from trying to look forward when my head wanted to look down. I spent almost 2 years in misery before I went for my revision surgery. It is a complicated surgery, in no way easier than the original surgery, but I was lucky and found a terrific surgeon who was very experienced in revisions and my body tolerated the surgery very well. He straightened me up and now I can walk with my shoulders back, eyes straight ahead. Everyone says I look younger (I do), and even my clothes fit better. I feel your pain, I really do. Make sure you go to a surgeon who knows revisions even if it is not your orig surgeon. Likely what you've developed is a sagittal imbalance which causes all your symptoms. It CAN be fixed.
    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.

  10. #10
    Join Date
    Oct 2005
    Location
    Chicago north suburb
    Posts
    774

    Carefully select your surgeon.

    While bad outcomes can happen even with the best of surgeons, you lessen the chances of that occurring by selecting a highly-skilled, well-experienced surgeon. I would not trust anyone who did not have a LOT of experience in adult spinal deformity even if they are SRS members. I would also avoid a surgeon whose interests are beyond spinal deformity, i.e., shoulder, hip reconstruction, sports medicine. If you live in a rural area, it may require doing some traveling to get to the best doctors. This forum has provided an excellent resource for identifying such doctors.

  11. #11
    Join Date
    Feb 2005
    Location
    Dayton, Nv
    Posts
    61

    Thumbs down PT Didn't Help Much

    For those who asked/suggested, I did go to physical therapy early on for 6 weeks or so. The heat and massage at the end is what helped the most, but my insurance won't pay for massage, and really, it's not "fixing" anything. My therapist said the right side of my back felt pretty normal, but the left side muscles were in "knots" and never loosened up throughout the process. This is still the area that hurts the most in my mid back when I stand, walk or try to be upright. Of course now the neck and upper back are worse and compete for first place in the discomfort department I know a lot of you are in worse pain than I am. Mine only hurts when I move Curves is great for me since I can no longer walk as I used to. For those not familiar with it, it is a 30 minute "curcuit" workout which includes many machines that you sit on and work various arm/leg/chest muscles. I could not stand for 30 minutes and excercise, so this is a godsend for me. A walk of any length requires my cane, and it still isn't enough to prevent the muscle pain. Of course I could take nsaids every day but I choose not too unless I really overdo it. I'd rather lose my liver to a nice Cabernet, thank-you-very-much Mostly, I put an ice pack on and just get off of my feet for x amount of time.
    I am scared to death of starting the process all over again, and can't believe I would even consider it! I do know that I don't want to spend the rest of my days unable to simply walk around the block upright and pain free. It's exciting to think this is possible again, but I can't help but remember what I went through the first time, and still didn't achieve that goal. Thank-you all, old friends and new. I'll keep you posted on what happens, and send some good vibes as you all make your own hard choices
    Sharon
    Singing the Blues
    Female 1951
    A/P Surgery Oct 13th & 17th '05, from T7-L5, 46 degree curve reduced to 19 degrees. Rib hump almost gone, no major complications.. but I now have kyphosis above the surgical area and went from 5'2" to 5' 1/4. I plan on a revision surgery with Dr Menmuir in Reno, Nv on October 13, 2010.

  12. #12
    Join Date
    Feb 2005
    Location
    Dayton, Nv
    Posts
    61

    Exclamation Naptown-Kristy

    Wow!!
    Amazing to hear that you had the SAME ISSUES, and you are now so much better!!! I am so happy for you. I see you're a grandma, so maybe you are
    50+? ..although my daughter made me a grandma at 38, just to annoy me, I think I have just the one daughter, 4 grandkids, but also a great hubby, 2 cats, AND a pembroke corgi! Maybe we're long lost twin sisters??
    It's so nice to hear the positive side of a revision. Kudos to your doctor for your new life.
    Sharon
    Singing the Blues
    Female 1951
    A/P Surgery Oct 13th & 17th '05, from T7-L5, 46 degree curve reduced to 19 degrees. Rib hump almost gone, no major complications.. but I now have kyphosis above the surgical area and went from 5'2" to 5' 1/4. I plan on a revision surgery with Dr Menmuir in Reno, Nv on October 13, 2010.

  13. #13
    Join Date
    Feb 2005
    Location
    Dayton, Nv
    Posts
    61

    Thumbs up Susie Bee

    You've got a good memory...and thanks for the kind words of support. I looked at your pictures. Wow. It's been awhile since I've really thought about what we look like inside Glad you're so happy and enjoying your life!! It proves anythings possible with a little help from our doctors, pts, and maybe most of all, our friends.

    Hugs right back attcha!!!

    S
    Singing the Blues
    Female 1951
    A/P Surgery Oct 13th & 17th '05, from T7-L5, 46 degree curve reduced to 19 degrees. Rib hump almost gone, no major complications.. but I now have kyphosis above the surgical area and went from 5'2" to 5' 1/4. I plan on a revision surgery with Dr Menmuir in Reno, Nv on October 13, 2010.

  14. #14
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Sheesh, Sharon, you made me realize I haven't done anything with my pictures in AGES. Those (my photobucket account) are just for my scoli friends. So now you inspired me to go add a few more. I added a couple from last summer -- my youngest daughter's wedding was here at our house, (well, in our yard/"garden," my other two daughters had their 1st babies 5 and 6 weeks before that, and then pics from a month ago with both babies again, celebrating their 1st b'days. So if you get a chance and want to, have another look. In two weeks I'll be in New Hampshire visiting little Samuel (and his parents)... can't wait!!! Yay for summer!

    I kinda doubt you'll look back at this, but in case you do-- I just went back and added a couple more pics again... you got me going!
    Last edited by Susie*Bee; 06-09-2010 at 12:08 PM. Reason: to add on...
    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

  15. #15
    Join Date
    Mar 2010
    Posts
    2,755
    Sharon,
    I'm so sorry to hear that you are in so much pain. Your pre-op major curve is the same size as mine, 46*. I'm considering surgery but undecided. I don't want to trade one pain for another as you have described. May I ask where you are fused? My biggest curve runs from T1 to T6 and my "smaller" curve is from T6 to L2. I don't think that I would have the kyphosis problem that you do because if I opt for surgery then I would be fused in that area. ((((HUGS)))) Pain really stinks! I think there are many, many people here that can really empathize with you. I have found wonderful support here. I really hope you can find a good doctor or something that will get you some pain relief soon.

    Take Care,
    Rohrer01

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