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Thread: Another newbie with a daughter diagnosed in December

  1. #16
    Join Date
    Jan 2013
    Posts
    13
    We haven’t set anything in motion yet as far as surgery. I’ve been doing tons of reading and research – it’s been kind of like cramming for a final in a college class I didn’t really want to take! The amount of information out there is wonderful but overwhelming. I wish I would have had a little more time to get used to the idea, starting at 51* just seems a little unfair. At least at 20* or even 30* I would have had some time to wrap my head around it!

    I have had some time to realize how many things I really have to be grateful and lucky for. That there is no great urgency, that we live in a time when treatment is as advanced as it is, that xrays and MRIs are painless, and that so many of you have already been down this road and can provide wonderful insight, we have great support with friends and family, etc.

    My daughter is doing ok. I don’t think that hearing that surgery was necessary came as a huge shock to her. Overall though, she doesn’t really say too much about it. She did express some concern about the chances of passing this on to her own children and also about falling behind in school. She also said that she would rather not drag things out and would like to just get the show on the road. She’s been keeping herself busy with some craft projects for Valentine’s Day to give to her teammates. I found this quote she used in her project which helped me feel that she’s doing ok with all this, “Our greatest glory doesn’t come from never falling, but in rising every time we fall”.

    It's going to be a long road, but we'll get through it.

  2. #17
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Quote Originally Posted by Breezemom View Post
    It's going to be a long road, but we'll get through it.
    Of course you will. You both will be stars. :-)
    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."

  3. #18
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Quote Originally Posted by Breezemom View Post
    I found this quote she used in her project which helped me feel that she’s doing ok with all this, “Our greatest glory doesn’t come from never falling, but in rising every time we fall”.
    I love it!
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  4. #19
    Join Date
    Oct 2012
    Posts
    39
    "We haven’t set anything in motion yet as far as surgery. I’ve been doing tons of reading and research – it’s been kind of like cramming for a final in a college class I didn’t really want to take! The amount of information out there is wonderful but overwhelming. I wish I would have had a little more time to get used to the idea, starting at 51* just seems a little unfair. At least at 20* or even 30* I would have had some time to wrap my head around it!"

    That is exactly the way I felt when my son was diagnosed. I received a crash course in a topic I was hoping I never had to learn about. I think it would have been so much easier to have had some time to adjust rather than BAM you have scoliosis and are in need of surgery soon. At least it saves us years of thinking about it and wondering if the curve will progress. We were 54* on initial diagnosis and heading for surgery in four weeks. It took my son a while to adjust to it, but I think he is doing ok, now. Me not so much! Good luck with everything!

  5. #20
    Join Date
    Jan 2013
    Posts
    13

    One small hurdle behind us!

    We found out Friday that the MRI showed nothing abnormal with her spinal cord. It was awesome to get some sort of positive news! We asked a lot of questions (and I'm sure we missed a few too!). He explained in detail what his surgical approach would be and I have to admit that it made me feel slightly woozy to hear in such detail. He remeasured her curve again and came up with 54* this time - I guess that's the 3*-5* margin of error in play. I'm glad our visit to Shriner's is finally approaching - we go on Valentine's Day. It seems that we are starting to have more bad days than good days with pain levels. It'll be interesting to see if/how the surgical approaches differ. After that we'll figure out what our next steps will be in getting the show on the road. Now, everyone have positive thoughts for no snow so that we can actually get there! Thanks to everyone for all the positive thoughts and messages, it helps tremendously to know that you aren't the only one that's been down this road before.

  6. #21
    Join Date
    Sep 2011
    Location
    Cary, NC
    Posts
    105
    Just found this thread. I see that many of the things I sent to you are the same being said here. I'll stress again not to beat yourself up over this. And you are not alone through any of this. Your panic is not unwarranted or needing to be apologized for.

  7. #22
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    breezemom like I said before shriners hospital for children is one of the best place's in the country to get scoliosis treatment I see there top scoliosis surgeon at uc davis and he is on the shriners facility
    Last edited by kennedy; 02-27-2013 at 03:48 PM.
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  8. #23
    Join Date
    Jan 2013
    Posts
    13

    Went to Shriner's - what an awesome experience!

    My daughter had all her pre-op testing done yesterday. It was a very long day! My daughter had us take pics for her of the different tests and such. She thought that she might like to put them into a video or slideshow that might help other kids going through the same thing. I have to say that the people at Shriner's are absolutely amazing. We definitely had the feeling that we were in the right place! Now we just have to wait for the scheduler to call us with a date. Hopefully it won't be too long of a wait! The sooner we can get her out of pain and on the road to recovery, the better. I was finally able to pull her xrays off the disk and have posted a couple.


    Upper.jpg
    full.jpg

  9. #24
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    breezemom i was wonder who your daughter dr is thourgh shriners
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  10. #25
    Join Date
    Jan 2013
    Posts
    13
    Hi Kara - she saw Dr. Gupta and he will be doing her surgery. He is just as wonderful as you said

  11. #26
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    I'm glad you both like him. he did my surgery almost 3 years ago. he did a really fanatic job from taking my curves from T50 degrees down to T20 degrees and L39 degrees down to L20 degrees.
    oh and one more thing your daughter should check out www.curvygirlsscoliosis.com
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  12. #27
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    192
    Breezemom -
    We as parents can't beat ourselves up, we can only research & be our children's best advocate. The silver lining of a diagnosis out of the blue like yours & ours is that you don't have the years in braces, all the wait & see. Glad you found the board here; it sounds as if you are in great hands w Shriner's & Dr Gupta. Have just gotten back on the site after months off, but will keep you & your daughter in prayers. She sounds like quite a neat young lady - I loved reading your approach of finding athletes who'd dealt w scoliosis, & of your daughter's determination.
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

  13. #28
    Join Date
    Jan 2013
    Posts
    13

    Surgery Date Approaching!

    Surgery date will be 4/29! She’ll be almost straight and rib-hump free! What a relief to hear! The fusion will go from T4 – L2. He debated on L2 or L3 but decided on L2 – YES! One lumbar level saved! I have learned that thoracolumbar curves really suck – you just can’t not fuse any lumbar levels. T4 because there is a curve starting up in the top thoracic and he’s concerned it will progress – he called it a “troublesome little curve” because it has a short, sharp angle. He also got a CT scan to check for anything congenital because her curves are at such short, sharp angles. We have the school plan in place and the rest of the ducks are lining up in their rows nicely. Thanks to all for your support! What a crazy, emotional, roller coaster ride this has been. From diagnosis to surgery in less than 5 months. Absolute insanity...but we are all looking forward to having this behind us.

  14. #29
    Join Date
    Feb 2013
    Location
    Tampa, FL
    Posts
    63
    Can't imagine how relieved and anxious you must feel, we will be there soon, probably this summer. I will keep you and your daughter in my prayers and on the big day 4/29!!! Surgery is going to help her so much, she'll be recovered and moving one with life in no time. A great summer lies ahead!

    All the best,

    -C
    Mom to son with new straight spine 8/15/2013 T16, L16
    Pre op T65, L?
    diagnosed 2/21/13 T55, L42

  15. #30
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    Breezemom that the same levels I was fused
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

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