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Thread: Surgeon recommendation urgently needed

  1. #1
    Join Date
    Nov 2010
    Posts
    2

    Surgeon recommendation urgently needed

    Hi, I'm new to the forums, but not new to scoliosis. My 15-year-old son has been dealing with scoliosis for a number of years and after bracing failed to slow the progression (in the last year he went from approximately 50 degrees to 70 degrees) his orthopedists are saying that he needs spinal fusion surgery and needs it now.

    We live in Pittsburgh and he's being treated at the Children's Hospital here, but we're considering taking him to CHOP or Shriner's Hospital (both in Philly) for the surgery.

    I would greatly appreciate orthopedic surgeon recommendations for Pittsburgh and Philadelphia. In Pittsburgh he's been seeing Dr. Stephen Mendelson and more recently Dr. Patrick Bosch. We're not unhappy with the care he's received, but given the seriousness of the surgery we're trying to get the very best and Pittsburgh's hospital has a much lower ranking than CHOP.

    Thank you for your help!

  2. #2
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    Hi Bec,

    I am sorry to hear your son needs surgery--that is certainly very difficult and scary news to hear. I think that's great you are looking for a second opinion/best care for him.

    I have heard good things about CHOP from some older posts here, but can't recall who. If you search the archives you may find some info.

    I have personal experience with Shriners Philly, we took our 6 y/o daughter there when she was first diagnosed 2 years ago. I can tell you that the care there is second to none, and I know your son would be taken care of by some of the finest, most talented and compassionate physicians. I would recommend sending in an application right away (it is a simple, short form available on theeir website, and you do not need a sponsor). All care is free of charge regardless of ability to pay, which I find absolutely amazing.

    I would also recommend you send an e-mail to Janet Cerrone, the PA of the spine program in Philly. She is the nicest person you will ever meet, kind and patient, and she will be able to help you further and perhaps get an expedited first visit. Her e-mail is: janetcerrone@comcast.net. She usually answers e-mail within a day or two, if not she will answer soon, I promise.

    There are a number of other parents here whose children had surgery at Shriners Philly and also had wonderful experiences. We ultimately transferred care to Shriners St Louis because the waiting list for my daughter's surgery (VBS not fusion) was long at the time she needed it, and her case was not as severe as others. However, with a rapidly advancing 70 degree curve, I am thinking your son would be a high priority. Janet should be able to give you more info about this.

    Good luck! You are so lucky to have such wonderful pediatric spine centers close to you. We flew 3000 miles to get there, but it was worth it!

    Please let us know how things are going for you and your son.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  3. #3
    Join Date
    Nov 2010
    Posts
    2

    Thanks!

    Thanks, Gayle!

    I'm glad to hear of your experience at Shriner's and hope that your daughter continues to do well.

    I'm humbled by everybody's level of expertise on these forums. I'm trying to get up to speed on this surgery as quickly as possible and understanding the nuances of my son's condition are definitely part of the hurdle.

    Did you go to Philly because it was better than the hospital in St. Louis? A big part of my concern is trying to get the best possible care and not knowing how, exactly, to assess that.

    It's easy to find reviews for all sorts of other products and services, but much harder when it comes to medical care. I feel completely out of my depth.

    Best,

    Rebecca

  4. #4
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    Hi Bec,

    We originally went to Philly because they pioneered VBS, and I believe they probably see more cases of juvenile scoliosis than possibly any other center. They followed my daughter's care along with our local pediatric orthopedist. 2 years later, when our daughter needed surgery, we went to St Louis because they had a sooner surgery date than Philly. St Louis and Philly are both absolutely top-notch, second to none. My daughter had a wonderful experience in St Louis.

    I understand you want the very best care for your son, and I agree, it is hard to assess and compare quality. I know you can not go wrong with Philly if they can get your son onto the surgery schedule soon enough. I would check with Janet about that.

    Also, it never hurts to have more than one opinion. Since you live locally, can you also get an opinion from CHOP and see how you like them?

    Take care,

    Gayle
    Last edited by leahdragonfly; 11-20-2010 at 11:20 AM.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  5. #5
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    hi bec the thing about shriners they provied really great orthopedic care to kid from birth to the 18th birthday i'm sure your son well get the best care at shriners in philly
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  6. #6
    Join Date
    Nov 2010
    Posts
    14
    Bec,
    you want the best care, right? go and get several opinions on hospitals. i am going to the radys children in sandiego.my curves progressed from 56 to 66 in the 6 months i wore the brace. word of advice. you might not go to dr. White in phonie, but if you do, he put me in a brace becouse he didnt want to do surgery becouse it was sport season.but get lots of diffrent opinions and tour some hospitals. that may choose what place to go to.

  7. #7
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    I have reported this spam (using the triangle in the lower left of the post). I had also reported the other member posting about buying pharmaceuticals (sp?) online.

    Hopefully Linda will delete both of their accounts - the sooner the better.
    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/

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