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Thread: Daughter having revision on Tuesday....feeling anxious!

  1. #1
    Join Date
    May 2006
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    Michigan
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    42

    Daughter having revision on Tuesday....feeling anxious!

    Well, my daughter is having revision surgery on Tuesday. I have to admit I an very nervous and want this to help her with her pain so much! She was fused by anterior surgery only from T-10 to L-2 on August 21,2006. Although the surgical pain went away, she was left with more pain immediately after the surgery and appeared "straight" the first few days after surgery and within a few weeks her hip was already out of alignment, unlevel and sticking out on one side. She was 16 at the time and the pain has affected her life for the worse in so many ways. She has been unable to sit, stand or walk for more than a few minutes at a time.

    Tuesday she is having a posterior surgery done and they are going down one more level to L-3 as her doctor believes she wouldn't have had these problems if she was just fused one more level. He will also be fixing her trunk rotation that came back right after her first surgery.

    The last surgery was so horrific, the way she ended up with the pain she has had for the past 7 years that she never in a million years thought she would be facing this again. She is having major anxiety attacks about having this surgery, but she has tried everything else to stop the pain and this is the only thing left. Need some encouragement and to hear that there are people that have had pain relief after surgery!

  2. #2
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,435
    So sorry to hear about your daughter. No child should ever have to suffer pain like that. I hope you have a top notch Doctor to do her revision. I'm sorry I can't offer any info regarding pain after surgery. I certainly wish her well and that she would be pain free after the surgical pain goes away.
    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.

  3. #3
    Join Date
    Oct 2008
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    Sunshine Coast, Queensland, Australia
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    LAL, I hope the surgery is over and your daughter is being taken care of very well. Your daughter's story would send shivers up any parent's spine. I'm so sorry she's suffered so much all these years. You too, I can imagine.

    Please keep us up to date with her progress. Sending the very best wishes from Australia for an easy recovery and a fantastic result.
    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
    Jan 2008
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    NC
    Posts
    8,093
    Good luck for the surgery tomorrow to your daughter and you, LAL. I hope this solves the problem.

    (Jennifer, it is only Monday night here. :-) )
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #5
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
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    Thanks Sharon! I need an International Clock!
    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

  6. #6
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    705
    Good luck with your daughter surgery
    Kara
    22 years old
    Posterior Spinal Fusion Mar 10,10
    T4-L2
    Getting Braces for my feet

  7. #7
    Join Date
    Jul 2012
    Location
    Warsaw, MO
    Posts
    284
    Praying and thinking about your daughter today. This surgery is tough on the entire family so I will be praying for extra strength for you to flow over to your daughter. Keep us posted on how she does. I won't be too far behind her. My revision is next month.

    Tamena
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

  8. #8
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
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    Thinking of you and your daughter. When you have the time and the energy, would love to hear an update.
    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

  9. #9
    Join Date
    Jan 2008
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    NC
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    Jennifer, perfect timing! It is ~6:30 in the evening on Tuesday in Michigan where LAL lives.

    Best wishes to all.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  10. #10
    Join Date
    May 2006
    Location
    Michigan
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    42

    Update.. we are finallly home!

    Here is an update on my daughter. She had a posterior revision Tuesday from L-! to L-3. She was previously fused anteriorly only from T-10 to L-2. She has complained of terrible back pain since coming out of her last surgery. She has had several MRI's and 2 CT scans in the past 7 years since surgery and nothing was really showing what was causing her pain. If you read my previous posts, this has been an ongoing problem daily for her although I have not posted a lot. Anyhow, her new surgeon decided to fuse her one more level because he thought her problem was that she was unbalanced after the last surgery. He was going to straighten her lower lumbar curve by extending the fusion one more level to L-3 and thought it would help with her pain. When he came out of surgery to speak with us he said he did fuse her to L-3 however he said when he looked at the L-2 it was "Icky and arthritic" and he cleaned that out and fused it". He left for Columbia right after her surgery to do some charity surgeries, so we have not spoken to him since and her follow up is Oct. 28th so I expect we will get more of an explanation, but he said he now thinks that was a major source of her pain.

    The resident that works for him and took care of her in the hospital described it as L-2 was like a triangle and one side was pinching and the other side was wide open and it was "arthritic looking".

    The last surgery was very traumatic, that is the only way to explain it. She hardly was able to walk in the hospital with the PT people, she'd walk like 10 feet and refuse to do more due to the pain. She came home had a very slow recovery, constantly complaining of pain, with pain sitting, standing, laying, walking. nothing relived it. She missed her entire 11th grade, she tried to go back to school several times but only lasted a couple of days and ended up doing homeschooling the entire year. Now remember she started complaining about this to her surgeon immediately after and every time she went to follow up appts. Her surgeon would keep saying she needed to be off pain medicine and go out with her friends. When I asked for the records from his office, I saw that he noted on them several times that she must have "regression and behavioral problems" because pain relief has been a problem with her. At one appointment the nurse even told her she was ungrateful for all that they had done for her because she was complaining so much.

    Fast forward to now.. This time has already been a completely different experience. She was up walking the next day without complaints. The very next day she said it already felt better to stand and walk than it has in 7 years since the day she had her last surgery, although she obviously is in a lot of pain due to the surgery itself, she can already feel some of the relief of her chronic pain. Last time she didn't shower in the actual shower for at least a month, I had to wash her hair with one of those bedside things and sponge bathe her because it was too painful and took too much out of her to shower. She came home today and took a shower, walked around the hospital a long way with the physical therapist before we left, sat and ate dinner with us and watched movies with her boyfriend. She is in bed now and says she is really sore, but I think she overdid herself a bit, but after her last surgery she struggled to do just one of these things after 2 months out of surgery.

    I am very optimistic that this revision is a success and I am almost afraid to say it because it is so early. The difference so far has already been night and day. I think this time she is having a "normal" recovery. I truly think that something just didn't go right with her last surgery right from the start. I am not blaming the surgeon, because I am sure he didn't know since we have gotten other opinions and they didn't see on the films anything to actually pin point what the problem was, but I am kind of mad that he didn't take her complaints seriously and take more interest in finding out what was wrong

    I will update again later after we see the surgeon on the 28th and he explains exactly what he did.

  11. #11
    Join Date
    Jan 2012
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    Yacolt, WA
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    1,199
    You sound like a great mother. Relax. Your daughter is lucky to have you. The nurse who said that your daughter should be grateful should be shot. Or at least not be working in nursing. She was inappropriate. She was so very wrong on so many levels to have said that! Tell your daughter that I said so!

    My suggestion? Lay low and smile that your daughter is finally doing better. Just tell her that you are here for you, whatever she wants. You guided her through probably the worst last years of her life, you are awesome. Just help her with whatever she wants and I know that she is very happy that you believed in her all of these years. She has some of life to recoup and I know that things will be better in the future.

    Congratulations mom on seeing this through. You did not cause her pain in the first surgery and I am sorry that it took so long to find a solution. Pat yourself on the back!

    Susan, mom of 2 and grand mom of 4
    2011: Degenerative Adult Onset Scoliosis @65
    25* T levoscoliosis/ 36* L dexroscoliosis w/ 11.2 cm coronal & 3.5 cm sagittal balance T kyphosis 90*
    Severe disc degen thoracic & lumbar stenosis L4
    Surgery: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    3/2013, Dr. Hu @ UCSF
    Postop hernia @ ALIF incision repaired 2014
    8/2014: Rev surgery OHSU Dr. Hiratzka hardware removal T3-T5; reinstrumentation & revision fusion T3-T6
    Proximal Junctional Failure w/ SCI

  12. #12
    Join Date
    Oct 2008
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    Sunshine Coast, Queensland, Australia
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    I was just shutting down for the day when I clicked on your thread. I'm so glad I did - this is the best news of the day! You and your daughter have been through a nightmare but it sounds so hopeful that the nightmare is over. I know it's very early days and you must barely be able to breathe after what you've previously been through.

    Wishing your daughter the very best of luck for a NORMAL, uneventful recovery. Please continue to update us!
    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

  13. #13
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,093
    LAL, I am so glad that your daughter is finding some relief which has been long delayed.

    I will be interested to hear what the surgeon says about the state of that vertebra and its relation to the (lack of) alignment. Dr. Hey seems to harp on the issue of proper alignment as being the key to keeping the unfused segments below a fusion healthy. And of course this concern gets magnified the further into the lumbar the fusion goes. Your daughter had trouble from day one it seems and now all these years later her vertebra below the fusion is very damaged.

    There is a woman on SSo who had a short anterior fusion like your daughter and had nothing but pain for years. She had the fusion extended, the metal work removed, and a million other things went wrong. Your daughter's story reminded me of that woman. The point of the anterior fusions on TL curves as I understand it is to be able to keep the fusion shorter so that it doesn't extend as much into the lumbar. That's a noble goal but the unfused vertebra need to be aligned apparently.

    All these testimonials make it clear that life is unfair. But your testimonial makes me mad that a child could be ignored for that long. There is an objective medical finding that is very likely the cause of the problem and it took them that long to find it. That is not right.

    It sounds like your daughter is finally getting her life back. Finally.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  14. #14
    Join Date
    May 2008
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    reno,nevada
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    Quote Originally Posted by LAL View Post
    I will update again later after we see the surgeon on the 28th and he explains exactly what he did.
    You can request the hospital reports from admin at the hospital. Just tell them that everything is fine, just interested in reading it and would like to have the records for future reference. I did this, and yes, it was an interesting read. Its something I will not lose.

    Nice that you can breathe a little now. Remember that she needs to take it real easy in the beginning of recovery.

    Short walks multiple times per day.

    Ed
    49 yr old male, now 55, the new 45...
    Pre surgery curves C12,T70,L70
    A/P 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

  15. #15
    Join Date
    Jun 2009
    Posts
    36

    Not all revisions are equal

    I'm glad your daughter is doing well.

    Pooka1. What I got from your message is that not all revision surgeries improve the condition. That's why I'm too scared to consult another scoliosis specialist after my first surgery failed. I know he will make me believe that my pain will be gone and what a revision surgery is, is a shot in the dark.

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