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Thread: I'm back and need some help!

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  1. #1
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71

    I'm back and need some help!

    Hello everyone!
    In my former life here on the forum, I was known as skoshi314. I had been inactive for quite some time and decided to just start over with a new identity. As a refresher, I'm from Oklahoma City, was fused T-10 thru L-5 in June of 2008, I'm now 47 years old and scared to death.
    I'm going to apologize upfront because I'm afraid this may be a bit long. I'm now 21 months post op and I'm still dealing with pain levels in the 6-7 range everyday, it's much worse first thing in the morning and in the evening. I can not stand upright unless I bend my knees a lot and walking any distance at all is a struggle. I am still taking narcotic pain meds just to get through the day. I work full time, have a daughter in college, a son that's a junior in high school and a daughter in 7th grade and I've been married for 24 years.
    I finally decided it was time (actually way past time) to find out whatís going on and why Iím not getting better. I saw another adult scoliosis surgeon here in OKC 4 weeks ago, Dr. Vincent Devlin. I truly like him and I have to say he was so much more thorough than my original surgeon. Dr. Devlin took about 15 x-rays before he even saw me during my first visit. After looking at my past MRIís and current x-rays he sent me for a CT scan. I was hoping he would tell me I was a big baby and I just needed to work harder with my PT and suck it up for a while, that itíll get better. Not so much. Starting from the top, Iíve developed severe kyphosis immediately above the fusion at T-10, I have about half the lordosis I should have in the lumbar area, the fusion in the L-3 to L-5 is very thin, S-1 is beginning to collapse and Iíve developed severe arthritis there, and due to the kyphosis and loss of lordosis, my sagittal balance is way, way off. The repair job is too big for 1 surgery, so he recommends 2 surgeries a week apart. He would fuse T-3 through S-1 and use iliac screws to secure it, do several osteotomies to get the lordosis corrected, correct the kyphosis to get the sagittal balance back, reattach hardware the full length and several other smallish things that I canít remember. The fusion would be done primarily posterior with a small anterior section in the L-4 through S-1 area. Dr. Devlin also said itís not a matter of IF to do the revision surgery, it a matter of WHEN to do it.
    After Dr. Devlin explained everything, he recommended I get another opinion before I make any decision on surgery. I have scheduled an appointment with Dr. Robert Wienecke here in OKC for May 3. He is a neurologist specializing in spinal deformities and adult scoliosis. Both doctors are SRS docs which makes me feel better. Iím anxious to hear what a neuros has to say since all the doctors Iíve seen up to this point have been orthos.
    In a strange way, I was relieved to learn there was an actual problem. Not because Iím looking forward to the revision, but at least now I know Iím not crazy. Iíve been saying for months I felt there was a problem and something wasnít right. I kept hearing ďGive it time, itíll get betterĒ. Guess what? I should have listened to myself a long time ago. This has been the most exhausting, depressing and frustrating thing ever. What I would give to wake up in the morning and not have my first thought, literally, be how much I hurt and whereís my meds. I would love to go to the mall and be able to window shop (ok, really shop) for as long as I want not just park at the door closest to the store I need to go to and then huff and puff back to the car, to catch my reflection in a mirror or window as I walk past and think to myself that Iím stooped over like an 80 year old.
    I warned you all this would be long, and I apologize for that. I just need to get the details out and start getting feedback from the people that know more about all of this than anyone in the world: the people that have and are experiencing this. I guess Iím looking for any information anyone would be willing to share. Thank you all for being an amazing group of people and the best support system in the world. Iím looking forward to your replies.
    Becky
    51 years old
    Married 28 years
    3 kids ages 23, 21 and 17
    Fused T-10 through L-5 June, 2008
    Developed junctional kyphosis, flat-back and sagittal imbalance
    Revision Surgery June 27, 2011
    Fused T-4 thru S-1 with pelvic anchor screws
    Take 2 revision October 15, 2013 to locate source of continued pain
    Pseudoarthrosis at L-3, 2 screws removed

  2. #2
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416

    Wink

    Becky
    I sent you an email before I read this. WOW! I am so sorry you are going thru all this. I felt like I was reading my own story. I will be having very similar surgery a week from today. With your symptoms and what your dr said I have no doubt that it is a necessary surgery. I hope that I will have a good outcome next week so you will have some encouragement ;-))
    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.

  3. #3
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Becky-- I don't have any helpful information or anything, but wanted to let you know I'm praying for you. I'm so sorry you have been having all these problems! I thought since you weren't posting anymore that everything was probably just fine with you... It sounds like you have things headed in the right direction now. Keep us posted. And please know that we care and are rooting for you. Hugs, Susie
    66 and still heartbroken...
    2007 52į 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 15į
    2014 DXd w/CMT (type 2)

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

  4. #4
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71

    Talking Thanks!

    Quote Originally Posted by naptown78 View Post
    Becky
    I sent you an email before I read this. WOW! I am so sorry you are going thru all this. I felt like I was reading my own story. I will be having very similar surgery a week from today. With your symptoms and what your dr said I have no doubt that it is a necessary surgery. I hope that I will have a good outcome next week so you will have some encouragement ;-))
    Kristy, I'm sorry you've had so many problems. I'll email you back tomorrow. I'd really like to know what's been happening with you and what you are having done next week.

    Quote Originally Posted by Susie*Bee View Post
    Becky-- I don't have any helpful information or anything, but wanted to let you know I'm praying for you. I'm so sorry you have been having all these problems! I thought since you weren't posting anymore that everything was probably just fine with you... It sounds like you have things headed in the right direction now. Keep us posted. And please know that we care and are rooting for you. Hugs, Susie
    Hi Susie, I can use all the prayers I can get at this point. I think I was having this inner battle going on, part of me knowing there is something wrong and part of me wanting to ignore it and hoping it would get better. Part of the ignoring process was avoiding anything that had to do with scoliosis. Thank you for the kind words!
    Becky
    51 years old
    Married 28 years
    3 kids ages 23, 21 and 17
    Fused T-10 through L-5 June, 2008
    Developed junctional kyphosis, flat-back and sagittal imbalance
    Revision Surgery June 27, 2011
    Fused T-4 thru S-1 with pelvic anchor screws
    Take 2 revision October 15, 2013 to locate source of continued pain
    Pseudoarthrosis at L-3, 2 screws removed

  5. #5
    Join Date
    May 2009
    Posts
    3,745
    Hi Becky
    i am so very sorry that you have been going thru this hell with the pain.... & the inner knowledge that something was wrong! isnt it amazing that when we try to ignore our inner voice, it is usually, if not always, telling us the truth!
    i hope you are able to go thru with the surgery & that it brings you a pain free life, the one that you so deserve!

    jess

  6. #6
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Oh Becky, I am so sorry to read your update. I think I came on this forum right about the time you had your surgery. Like Susie, I thought everything was going well for you.

    Definitely get several opinions on this. It sounds like it will be a complicated surgery. What did your original surgeon say if/when you went back to him saying you had problems?

    ((Hugs))
    __________________________________________
    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

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