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Thread: 3 parents of Greenville Shriners' children

  1. #46
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Kris,
    Crystal had an 88 degree kyphosis curve. With her fusion (T2-L2) and rods her rib hump is gone, no shoulder blades sticking out or anything. She only had posterior surgery and Dr. Krajbich used cadaver bone for her fusion, so no additional incisions for a bone graft. Dr. Krajbich is just as pleased with the results as we are. Also, she had her three month post op on Saturday. She can lift up to 25 pounds now. She is pretty thrilled with that. Her sisters are to as she can now help do some chores. Are you still using Shriners. I am so glad we did.

    'til later,
    Nikki

  2. #47
    Join Date
    Mar 2005
    Location
    Kannapolis, North Carolina, near Charlotte
    Posts
    373
    Nikki, good to hear from you! Surgery is finally drawing nearer for us, it seems. We are now trying to avoid injury and illness for the next 3 weeks. I wish the best for Dawn's son, as he is at camp until right before surgery sometime. Of course, my daughter may go hiking this week as she is visiting her cousin for the week. I warned them about possible injury, so I assume they'll be careful. They said they will make sure the paths are wide so she won't likely trip or get scratched, etc. I told her no basketball anymore, as she sprained her ankle a month ago when her shoe was loose and she ran for the ball in our own driveway. When she returns from her cousin's this weekend, we do a day at a zoo and then hopefully spend a quiet 2 weeks with swimming as the biggest activity other than reading, watching videos, etc. As long as she doesn't fall getting in the water she SHOULD be safe, I hope. So, at 3 months she may be able to carry some heavy stuff, yeah! I notice someone said their daughter is struggling with stairs at 3 months, so I am prepared for whatever she actually does, and however quickly she recovers, as long as she is healthy when she finally recovers. I'm glad to hear the rib hump is gone with no shoulder blade protrusion in your case. I hope and pray for the same here. Yes, we are doing Shriners. Kris

  3. #48
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Kris,
    I totally understand the being healthy and uninjured thing. Crystal came off of basketball season four weeks before her surgery. She broke some ribs the season before at her last game. That could of really put a monkey wrench in things had she done that this year. Then immediately caught a cold. We had to pull her out of school for three weeks before surgery and limit who could come over to see her. She wasn't allowed to have friends over or go anywhere she might pick up a bug from. Everyone at school was sick and I had to get her over the creeping crud and keep her healthy. The few weeks before surgery seemed more difficult than the first few weeks after surgery. At least after surgery any of her friends could come see her and if she felt up to it, she could go for a car ride, etc.

    You will appreciate that Shriners doesn't do surgery on children if they are sick. They want no part of sick patients on their surgery ward. You will notice that there isn't one sick child on the ward. They are all perfectly healthy, just various orthopedic problems.

    Crystal seems to be pleased with being able to lift more in weight. She is eager to go out and feed her sheep now. I only have to remind her once to get it done.

    Well, it's late and I have a huge week this week. Our International Order for the Rainbow for Girls has its Grand Assembly this week. Crystal leaves tomorrow since she is a Grand Officer and the Mother Advisor, myself and remaining girls in the assembly leave early Thursday morning to go over. So need to be in bed.

    'til later,
    Nikki

  4. #49
    Join Date
    Mar 2005
    Posts
    46

    Red face

    Hi all. I have been taking a break from thinking and worrying about the surgery and have more or less forgotten to check this site. Wells is at camp now and surprisingly, I am not worrying too much or at least as much as I thought I would. I am turning as much over to God as possible which has not always been my strong suit. I don't mind turning things over, it's just that I want to make suggestions on the outcome. I hope he is having a great time and is not thinking about the surgery much. Since the rest of his summer won't be too active and fun, I'm glad he's is there now. I do wish the timing was a little different. Kris, I look forward to meeting you and Erica in person!

  5. #50
    Join Date
    Jun 2005
    Location
    Hialeah, Fl, USA
    Posts
    44

    A failure sugery

    Iím the father of Lia Gabriela who has a genetic disease called Chondrodisplacia Puntacta causing her kyphoscoliosis due to hemivertebrae. Her first surgery was at 16 month for fuse T8 - T12. The surgery absolute fails because of Staphylococcus Aureus sepsis. Then she used Boston brace until three years old when she was again surgery making her an instrumentation Luque (posterior two rods) from T1 to L1 and fusing her hemivertebrae. Again the surgery fails because of local sepsis staphylococcus aureus. And 8 month later the rods was removed. Even when fuse happens the correction was losing.
    The doctors are planning a third surgery by anterior approaching for remove the main hemivertebrae and do an anterior fuse, this is taking away one or more ribs. They think on adapt her a titanium implant of adult cervical. The doctors told us that for child of 4 years nobody build implants around the world.
    I do live in Havana, Cuba, and canít have other medical opinion because thereís only one team able to do this surgery in the country.
    I heard about Shrinners Hospital and visited they WEB pages. I noticed that some of you see yours relatives in USA Shrinner hospital. Can any of you help me reaching them? To evaluate my daughter. I have CAT, RMM and all X rays digital.
    Can you tell me how much cost yours surgery in other USA hospitals and if thereís any organization that can help me in order to finance such kind of surgery.

    I donít have much time for decisions

    Thanks for your help

  6. #51
    Join Date
    Mar 2005
    Location
    Kannapolis, North Carolina, near Charlotte
    Posts
    373
    Carlos, I downloaded the application form the Shriners website and sent it in to them. A few weeks,maybe, I received an letter informing me of an appointment with them in about a month. The appointment lasted at least 4 hours, as they warned us, so it was a very thorough appointment. They then put my daughter on a high-needs waiting list for surgery, and I finally was informed of it about a month or 2 later, I think. Her surgery is July 18. The whole process is free of charge, paid by by donations. I don't know if they pay for people out of the country, but I believe they mentioned it. I know either our private doctor or Shriners mentioned flying people in from other countries, etc., but I'm not sure who pays, etc. With insurance, it would have cost my about $5,000-$10,000 to have our private physician do the surgery at a regular hospital. The actual surgery, hospital stay, etc., costs between $100,000-$300,000 at a regular hospital, from what I have read on this forum. The doctor bill alone is around $90,000 or so. The hospital bill is about the same, probably, so depending on complications, I assume at least $150,000. There is also a phone number to call Shriners to get them to send you an application. The number is on the net. I believe you could also call one of the hospitals using their direct line and talk to them personally. We do have a representative or whatever, who I can call (not toll-free, it costs me money to call) to get answers to general questions like how long to stay at the hospital and probably things you might want to know. This liaison or representative would probably not be able to tell me specifics about how the surgeon plans to do the surgery, like what hardware to use, etc., but if I have questions about what will occur, like how long in ICU, type of bed I will sleep on, etc., I don't have to wait for a nurse or doctor to call me back. I can see if I can find our liaison's number, if you can't get through on the regular lines. God bless you. Kris

  7. #52
    Join Date
    Mar 2005
    Posts
    46
    Carlos, I agree with everything Kris has said. I would also add, that Shriners hospitals are located throughout the US (I don't know about outside the US) and that they are known for having some of the best pediatric orthopedic surgeons in the world. Their services are free and at least in the US, transportation to and from the hospital can be included, if needed. It's a reversal of what we usually think of in the US that quality cost lots of money. I wish you the very best and may God bless you and your daughter.

  8. #53
    Mary Lou Guest
    Carlos,

    I contacted a Shriner's Hospital in Philadelphia, Pennsylvania, USA and they said that at times they do provide services to people outside of the USA. She told me to have you send the application in to them, so here is the address: Shriner's Hospital for Children
    3551 North Broad Street
    Philadelphia, PA, USA, 19140-4131

    Here is their phone number if you would like to contact them directly: (215) 430-4140 or 1-800-281-4140, ext. 4140.

    I'm not sure how all of this would work with you coming from Cuba, but I'm hopeful that if enough of us work with you from the US, we could find some organization somewhere that would be able to help your daughter.

    Mary Lou

  9. #54
    Join Date
    Sep 2004
    Location
    Baltimore, MD
    Posts
    401
    With the Cuba/USA travel issues, the Shriners in Canada might be an option to explore as well...

    Shriners Hospital-Canada
    1529 Cedar Ave.
    Montreal, Quebec, Canada H3G 1A6
    Telephone 514-842-4464
    Fax 514-842-7553
    Susanna
    ~~~~~~
    Mother of a 17 year old daughter. Her "S" curve was 40 degree thoracic from T3 to T9, and a 70 degree rotatory thorcolumbar from T9 to L4. She was operated on March 9th, 2005 by Dr. Boachie-Adjei at the Hospital for Special Surgery in NYC. She was fused from T11 to L3, using an anterior approach, and the major curve corrected to 20 degrees. She's doing great!

  10. #55
    Join Date
    Jun 2005
    Location
    Hialeah, Fl, USA
    Posts
    44

    From Carlos

    Dear friends, thanks a lot for writing me at NSF Forum. Actually is a great help. A couple of months ago I filled the application for foreign patients for the Shrinner Hospital of Montreal where my older brother live. The doctors got met and says that they could not do the case because is high risk and they don't have an specialist required for cases with previous infections. Now I'm trying to give the information (CAT, MRI, Xrays) to some of the Shrinners of USA, wishing that they could evaluate my daughter's case.
    Carlos

  11. #56
    Join Date
    Aug 2005
    Posts
    18

    4th parent of a Greenville Shriner's Child

    I am sending my application in Monday. My daughter's curve is only 30%, so surgery is not necessary. Do you know if the Shriner's will still be able to see her? My Grandad was a Shriner all my life and I spent my summers serving fish dinners with him :-). We live near Raleigh, NC.
    Last edited by Christle; 08-20-2005 at 11:19 PM. Reason: typo

  12. #57
    Join Date
    Sep 2004
    Location
    Baltimore, MD
    Posts
    401
    Christle,

    I have heard that Shriners will cover every aspect of your daughter's care, including bracing, x-rays, physical therapy, etc. Sounds like your Grandad is watching over you. Best of luck with your daughter!
    Susanna
    ~~~~~~
    Mother of a 17 year old daughter. Her "S" curve was 40 degree thoracic from T3 to T9, and a 70 degree rotatory thorcolumbar from T9 to L4. She was operated on March 9th, 2005 by Dr. Boachie-Adjei at the Hospital for Special Surgery in NYC. She was fused from T11 to L3, using an anterior approach, and the major curve corrected to 20 degrees. She's doing great!

  13. #58
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Christle,
    Shriners will meet all of your daughters orthopedic needs. We have three daughters and they all go to Shriners. They are all at different levels of scoliosis. One is a wait and watch, one wears a brace, and one had surgery in March. All of this was paid for by Shriners. I am glad you understand the personal commitment the Shriners men make to the hospitals. My husband is a Shriner and we are always working on fundraisers for the hospital. Be patient with the hospital giving you an appointment. Sometimes it can take a while, depending on the seriousness of your childs scoliosis. We were 8 weeks from application date to our first appointment date. However, our daughter with the 88 degree curve had surgery within 5 months of her first appointment. Our daughter that needed the brace got it immediately. Our daughter that is a wait and watch goes in every 6 months. So, as you can see we spend a lot of time at the hospital. While you are there, if you have time, ask for a tour of the hospital. You will then have a pure sense of pride for many fish meals you helped you Grandfather serve during the summer. Our daughters have a huge sense of pride because they help our Shrine club here so much and have a personal experience of what that money goes for.

    'til later,
    Nikki

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