Shriner's Hospital *updated 1st post*

[tinkerbelletreasure]

My DSD 13 has sever scoliosis. She been to one specialist and he says the surgery is too advanced for him and he referred us to someone else. That surgeon is not covered on our insurance. SO we had to go back to the PCP and have them write a letter to the insurance company to explain why we should be able to see an out of network specialist. Long story and 2 months later..we finally hear that we can be referred to a specialist 3 hours away.
In the meantime, a friend who has a cousin whop has been through the surgery a couple of times told us about Shriner's in St Louis and how the best scoliosis specialists in the country are there. So we decided to give it a shot and are mailing off our application and copy of the x rays on disk tonight. Does anyone know how long the process takes before we will hear anything either way? From what I have been reading online, I know it can take up to 6 months to actually have the surgery, but I am more concerned with waiting to hear back from them and if for some reason we are denied, having to start all over with the insurance.
Does anyone have some insight or experience.

Good news! We heard back from Shriner's today, 8/17 and she is going to be able to get her surgery there!

 

[livndisney]

My DSD 13 has sever scoliosis. She been to one specialist and he says the surgery is too advanced for him and he referred us to someone else. That surgeon is not covered on our insurance. SO we had to go back to the PCP and have them write a letter to the insurance company to explain why we should be able to see an out of network specialist. Long story and 2 months later..we finally hear that we can be referred to a specialist 3 hours away.
In the meantime, a friend who has a cousin whop has been through the surgery a couple of times told us about Shriner's in St Louis and how the best scoliosis specialists in the country are there. So we decided to give it a shot and are mailing off our application and copy of the x rays on disk tonight. Does anyone know how long the process takes before we will hear anything either way? From what I have been reading online, I know it can take up to 6 months to actually have the surgery, but I am more concerned with waiting to hear back from them and if for some reason we are denied, having to start all over with the insurance.
Does anyone have some insight or experience.

You may hear back from them quickly, but an appointment may not be for months. It may really depend on the situation, but we got an appointment 7 months out. A friend with a child with a similar need (but more severe) was able to get an appointment 3-4 months out.

 

[barkley]

dd is a shriner's kid.

when we moved here we learned that the only pediatric orthopedic surgeons with the expertese to monitor dd's arm (she had undergone surgery for a bone cyst in her humerus a year or so prior to the move) were associated with the local shriner's.

i was initialy told it could take quite a while to get approved and schedualed for an appointment but found that was not the case.

in our situation i called shriner's and spoke with their staff who suggested i have her former pcp do the physician referal (which dd's former doctor was amazed was very simple to complete) and have her fax it. shriner's faxed the form to me, i faxed it to the doctor who completed it and faxed it back to shriners. within 48 hours i received word dd had been accepted, and initialy i was thrilled to get an appoinment shedualed within 2 weeks. i was amazed a day later when i received a call that offered a cancellation appointment for the next day

dd was seen, and she had surgery within 1 month of her first appointment.

she has gone from 3 month follow ups to 6 month, and now yearly (they monitor her arm as well as her scoliosis).

we were told that shriner's criteria for acceptance is based purely on weather a child can benefit from the services they have available-so if they have a specialist that provides the services a child needs, they will do their best to serve that child.

one of the things that can delay appointments is that some specialists volunteer their time and may only do intake appointments one day per month, and follow up appointments on one other day per month.

don't hesitate to call them-they are wonderful people who will assist you in the process.

 

[tinkerbelletreasure]

Thanks for the help! I don't mind waiting a while for the surgery. She is special needs, so during the summer would be the best option so she doesn't have to miss school and get even further behind. We thought we'd be able to have teh surgery this summer through insurance and it has just been one dead end after another because the specialist we saw said the surgery was too complicated for him and we've had so much trouble being able to get a referral to anyone else.
I just wanted to make sure we were in limbo for another 2-3 months while we could be having an appointment with the latest referral if Shriner's says no. The newest referral has about 4-6 month wait for appointments as well which is why the delay could be an issue.
I know someone else who's cousin had the exact same surgery that DSD needs, and had it at Shriner's so she can definitely benefit from going there.

 

[mdvlprof]

If you can get into Shriners-go for it. Our experience with them is that they have excellent staff.

Can't answer question about time- DS was about to turn 18, so they pushed buttons to make sure he was seen before his 18th birthday.

 

[RACHELSMOM1]

Love Shriners Hospital!! We got our appt fast!!! Went for orthopedic - Rachel wears braces on her feet. They did a complete physical on her, xrays from top to bottom. Found out she has scoliosis, did not know before, and once you are in their system they treat the children until 18, no cost to the parents. I highly recommend them. Our local shriners provided escort to the hospital, transportation from our town, hotel while there, and meals were all paid for by the shriners. Such a wonderful experience!

 

[kimbac3]

Just wanted to chime in my praises for Shriners too. I'm a Shriners Kid myself!!
I really look back fondly at my time at Shriners and at the surgeons, nurses and my "brace" man!! I looked forward to my check-ups.

They are a great hospital. Best of luck to you and you daughter!

 

[tinkerbelletreasure]

Thanks guys! This has been such an ordeal for us. DSD has only lived with us since January and her mother had let the problem progress so long that we've had a couple doctors be pretty harsh with us until we explain that we just got custody.
We really wanted to do the surgery local and we are so close to Tulsa which has so many hospitals we are just blown away that there are no local pediatric orthopedic specialists! St Louis is going to be a long trip for us and I still have no idea what we are going to do with our other 2 children when we have to make the trip, but I really do think this is our best option at this point. She's scared, we're scared, and the last thing we need is to deal with insurance red tape.

 

[RACHELSMOM1]

Thanks guys! This has been such an ordeal for us. DSD has only lived with us since January and her mother had let the problem progress so long that we've had a couple doctors be pretty harsh with us until we explain that we just got custody.
We really wanted to do the surgery local and we are so close to Tulsa which has so many hospitals we are just blown away that there are no local pediatric orthopedic specialists! St Louis is going to be a long trip for us and I still have no idea what we are going to do with our other 2 children when we have to make the trip, but I really do think this is our best option at this point. She's scared, we're scared, and the last thing we need is to deal with insurance red tape.

When we went our local shriners transported Rachel and me to Tampa to the shriners hospital there (a 6 hr drive) and my hubby stayed home with our other two children. We left early one morning (day before appt) and returned late the next day (left as soon as appt was over). If we were to choose to drive ourselves they would make hotel ressies and give us 100.00 cash to help with expenses. Contact your local shriners and ask if they could help.

 

[livndisney]

When we went our local shriners transported Rachel and me to Tampa to the shriners hospital there (a 6 hr drive) and my hubby stayed home with our other two children. We left early one morning (day before appt) and returned late the next day (left as soon as appt was over). If we were to choose to drive ourselves they would make hotel ressies and give us 100.00 cash to help with expenses. Contact your local shriners and ask if they could help.

That may really vary on your local Shrine. We went to Tampa as well. We were told no assistance was available for transport or anything else.

 

[dodle]

I am the mother of a "shrine" child. I can say nothing but good about them. The time between when we applied and when the first appointment was was only a few weeks. And we knew within about a week when that appointment would be. We lived first in North Carolina until my son was 9 then in Michigan. In NC the trip was an overnight because the closest hospital was 9 hours away. They took us down, put us up at a hotel overnight and fed us all our meals. In Michigan, the hospital was only 6 hours away so they took us down and brought us back all in one day. He was taken care of from the time he was 1 1/2 until his 18th birthday. So far no one else has been able to make a leg prosthetic that fits him the way Shriners did. He misses them alot. Hang in there and get them to take care of you. It will be worth it. Contact your local Shrine temple or Masonic lodge for help with transportation. Good luck!

 

[RACHELSMOM1]

That may really vary on your local Shrine. We went to Tampa as well. We were told no assistance was available for transport or anything else.

Where do you live?

 

[Tammy Robbins]

Hi - I work at Shriners Hospitals for Children in St. Louis. I just called over to my coworker in our patient applications department, and she asked that I tell you to call her directly, and she can answer all your questions for you. Her name is Karen Brendell (she's an RN) and you can reach her at our toll-free number at 1-800-850-2960.

Also, if it comes down to finding transportation to our hospital, we'll help you get in touch with the Akdar Shriners of Tulsa. They have vans that will bring you and your family here to St. Louis for your child's appointment.

Whoever told you that the best scoliosis doctors in the nation (and world!) are at Shriners Hospital in St. Louis was absolutely correct. Our doctors very literally wrote the text book on helping children with severe cases of scoliosis. They see the most extreme cases on a regular basis, so they really have "elite" experience.

Please call Karen, but if you have further questions, you can also feel free to call me, too, at 314-872-7837

Tammy Robbins

 

[tinkerbelletreasure]

Thanks Tammy!

 

[barkley]

you have a contact-that's great!

just wanted to mention re. the missed school issue-check with shriner's b/c when dd was getting schedualed for surgery we learned that had she been schedualed for a longer stay there was a process for getting her missed schooling information to staff there so that their in-house teaching staff could work with her on it (the hospital had established "school" hours during weekdays for this purpose). i would imagine that if your child has special needs, if you could find out from shriner's staff how much detailing they need from her existing teacher it would be beneficial to be able to let that teacher know well ahead of time.