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  1. #1
    Join Date
    May 2012
    Location
    Illinois
    Posts
    9

    Shriner's St. Louis called!

    After reading here and listening to everyones helpful advise and stories, we sent our application for treatment to Shriners.


    They called today to get more information and and let us know it could be Sept. before they can see David. I don't care how long it takes just as long as David gets to see one of their specialists. I know his curves are not that big. (Two 30* something curves in thoracic spine) I just really want to know how many hemi-vertabras and where.

    She asked about his hand tremors and his electric shock sensations. Said this may or may not be there area of medicine but would send us to a neurologist if needed.

    I feel like we are moving in the right direction now and maybe we can find out a bit more about what is going on with him.

    Thanks for listening.
    Sara

  2. #2
    Join Date
    Mar 2010
    Posts
    2,755
    I sincerely hope they can help your son. It's good that they will be able to determine whether his other symptoms are related to his spine. If they aren't, I'm sure they will refer you to the best neurologist. Best wishes to you and your family, Sarah.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  3. #3
    Join Date
    May 2008
    Posts
    169
    Hi Sarah. just read your posts to get myself up to date and I am so very happy that you have heard from Shriners. From what I have read they are simply brilliant there, I truly wish you and your family all the very best.


    Lorraine.
    Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
    Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

  4. #4
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Hi Sarah,

    My daughter had vertebral stapling surgery 2 yrs ago at Shriners St Louis. She received excellent care from their amazing staff, and we just love Dr Luhmann. I am so glad that your son will be seen there.

    I don't know if you have to travel to get there, but there is a very nice Hilton several blocks away, the St Louis Frontenac Hilton, that has a Shriner's rate of $55/night. We stayed there for our three trips to St Louis and were very comfortable.

    Please let us know how things go with your visit.
    Gayle, age 49
    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)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

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

  5. #5
    Join Date
    May 2012
    Location
    Illinois
    Posts
    9
    Thanks for the replys. We are very lucky to live only 15 miles away from St. Louis. I've always known we had great childrens Hospitals here but knew nothing about Shriners. I learned about them from this forum.

    I keep thinking Sept. is so far away but it really isn't. Before we know it school will be starting up again and our appt. will be here. It will be good to just know a little more and understand what the future holds for David.

  6. #6
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Sarah,

    I'm glad your son will be seen at Shriners in St. Louis - I have heard nothing but amazing things about the staff there.

    Gayle,

    Do you think if Sarah called Dr. Luhmann's nurse they could get David in before September? That seems awfully long to wait for a consult. Even in Philly, as utilized as that clinic is, they can normally see a child for an initial consult in a matter of weeks. Just thought I'd throw that out there.....thanks.
    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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