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  1. #1
    Join Date
    May 2006
    Location
    Michigan
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    41

    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
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    1,445
    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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    3,261
    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
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    Jan 2008
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    NC
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    8,901
    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
    Posts
    3,261
    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
    891
    Good luck with your daughter surgery
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  7. #7
    Join Date
    Jul 2012
    Location
    Warsaw, MO
    Posts
    373
    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)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

  8. #8
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    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
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    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
    Posts
    41

    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
    Jul 2012
    Location
    Warsaw, MO
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    373
    Wow! She has been through the ringer! The scoliosis alone can stress a body and person and to top it off with so many other things, my heart hurts for her. Praying that she is now in the true road of recovery from everything.
    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)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

  12. #12
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    NC
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    Wow I hope that now that she has a correct diagnosis she can start to feel better after SEVEN YEARS! Wow. I hope she isn't also depressed after all that. Other people on this or the other scoliosis forum have the POTS thing your daughter has. So that may go along with some syndromes that also have scoliosis associated with them.

    It's the obvious thing to try to connect the surgery with whatever happens downstream but unrelated things can happen. The surgery was a red herring as a trigger and delayed the diagnosis it seems.

    Hopefully your daughter is finally feeling better now that she is on the meds.

    Life is grossly unfair. All we can do is press ahead.
    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."

  13. #13
    Join Date
    Mar 2010
    Posts
    2,755
    LAL,
    This is an incredible story! She truly belongs on "Mystery Diagnosis". I honestly think that show helps other people with similar symptoms actually find needed relief. I feel SO badly for your daughter. This is the first time I've seen this thread, so that's why I haven't piped in with support earlier.

    Do they think the adrenal malfunction is due to the many steroid shots that she had been receiving? It scares me because I get these shots fairly regularly. I've had a bunch this last year. There is another lady on here, jrnyc, that had her cortisol drop almost to nothing after receiving regular steroid injections and then getting a final "whopping dose". It devastated her. Fortunately, she was able to recover...slowly.

    As far as your daughter being chastised for "being in pain" with not apparent cause? How dare they! I'm NOT a sue happy person AT ALL, but she lost SEVEN years of her life because no one but you (and I'm sure her friends and other family) believed her. I was made to take a medical MMPI where they said that I had somatic pain. Then the jerk looked at my chart and pulled up some x-rays and said, "But, surprisingly you DO have pathology." Duh! Those tests are geared against women. I do have something wrong with the other body systems that it asks you about. I've recently been diagnosed with Cervical Dystonia (Torticollis) and now some sort of other muscle disease (MD) that I have yet to get the results of (hopefully this week). Muscle diseases are very painful and can affect every other body system. So, even with those tests there are outliers, like me. I finally have found the source of MY pain and it is NOT somatic but can be proven by the EMG's that I have done. It's taken me from the time I was 12 (I'm 45) to get some real answers. My scoliosis was a red herring, too.

    As in your daughter's case, endocrine disorders can truly be very difficult to diagnose. While the scoliosis and subsequent surgeries may have been a "red herring", this may have also proved to be what accelerated her underlying disorder to the point where she now has an accurate diagnosis and can get well. I hope her new medicines help. She is young and deserves to enjoy her youth. Hopefully, she will get well and feel great and enjoy her young adulthood. She may be able to look back and think that this is what it took to finally feel better rather than feeling like so many years were wasted. I'm just so surprised that they didn't do any of this kind of blood work before her surgeries. For some reason I thought it was standard to check at least the thyroid. I know, for me at least, they check my thyroid pretty often, even though it's never been off. But I have the tachycardia issues which I'm on medication for.

    I wish her well and am hoping that these new meds finally do the trick.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  14. #14
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,524
    So sorry that your daughter has been through this, but hope that she is now on the mend. One time my daughter had a physical problem that could have easily been kissed off by her pediatrician as having an emotional etiology. After the doctor did her exam on my 4 year old daughter, she turned to me and asked, "Do you think that this is an emotional problem?". She respected that I knew my daughter the best. I told her "no", so she referred us to a specialist who did surgery, and that solved the problem! She could have easily just assumed that it was all emotional, and I appreciated her trusting that I as her mother knew her the best. I am sorry that nobody believed you and your daughter about her pain and did a better workup.
    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  15. #15
    Join Date
    May 2009
    Posts
    3,745
    just a note about steroid shots...
    i had a big crisis because i got too much steroid....
    my cortisol level crashed to .39....
    it should never be lower than 5.0 and my doctor tells
    me she is not happy if it is under 12.0
    i was so exhausted i could barely breathe, and am lucky
    my cortisol level came back after 6 months...

    i am not saying the steroid shots caused what is wrong with
    your daughter....just pointing out to be careful with them...

    i just had a half dose steroid shot in left hip, after struggling with pain for almost a year....it has helped eliminate the hip pain....and was half the "normal" dose....i got 20 mg instead of 40....
    hip pain is supposedly being caused by lopsided loading on hips
    due to scoli....

    hope your daughter feels better every day....
    and please never let a doctor ignore any symptom that you feel
    is important....

    jess...and Sparky, the wonder puppy

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