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Joe O'Brien
10-02-2003, 04:37 AM
Something worth looking into:

Any child under age 18 may be able to get free care for scoliosis at the Shriners Hospitals. You do not have to be affiliated to Shriners, financial status is not considered, and you are often treated by some of the top Orthopedic spine specialists.

For a list of hospitals and an application go to www.shrinershq.org.

For anyone who has used Shriners please post and let us know if you were satisfied or not. Thanks.

jojo
12-22-2003, 09:08 AM
i live in massachusets and was refered to boston children's hospital. the people they have on the phone seem so inconvenienced by the phine calls and are rude. I felt that with my 7 year olds situation the last thing i need is rude mean people taking care of her. I called shriner's in springfield, ma. the woman on the phone was so nice and i got an appointment in one week. that is much better than the 6 months i was given by the other place. Have you received any coments good or bad about shriners? where would they be posted? I remember being treated there as a child, but I saw so many doctors I have forgotten which were where. I do not however remember any bad experiences at any hospitsl or care facilty. thanks for the great advice.
jolynn

onebabyfrog
04-18-2004, 02:48 PM
I have had nothing but good things from Shriner's.
One of my daughters had a back ache, we say the doctor and was diagnosed with adolescent idopathic scoliosis. I have the same thing. She was in the mid teens and the first doctor said " once a girl has started her menstural cycle bracing can not correct anything" He went on to comment that a 16 degree curve in the lower back is not a major deal.
I contacted Shriner's under the advice of a friend and they got her into the Kluge Childrens Center in Charlottesville Virginia.
The Doctor was professional, spoke in words we could understand and started her in a treatment program.
Now thanks to medication and physical therapy to strengthen her back muscles she is staying under 20 degrees and very active and pain free.
Shriner's made it possible for her to get the best there was in our area. And I had no insurance at all.
Every time we see them in a parade in their little cars we cheer and wave. They are awesome in our eyes.

greggo72
02-04-2005, 09:03 PM
Does anyone know how long the wait is? We just applied 2/4/05 and mailed an applications but our daughter need surgery in 3 months because her first fusion failed and the wire they placed in her spine has broken. Is there a waiting list? Do they tell you right away if you were denied? thanks Cindy and Gregg

nikyergen
02-05-2005, 12:20 AM
The wait at Shriners will depend on a number of things. How serious is your daughters condition and who her doctor will be. My daughter's doctor is also Chief of Staff at the Portland, OR Shrine Hospital. He also teaches a lot of these surgeries all over the world. She saw him the middle of October and has been waiting for a surgery date. Hers is not life or death, so those that are come first. She was scheduled for 03/15/05 for surgery, and that has now been postponed. Some get in to see a doc within a week or two, and depending on who their doctor is, have surgery shortly thereafter. So, it just depends. Since she is having problems with hardware, it may be sooner than you expect.

Mary Lou
02-05-2005, 07:28 AM
My 13 y.o. daughter was seen by Dr. Betz (Gregg, I think Carmell suggested Dr. Betz to you if I remember correctly) at the Shriners in Philadelphia. Although she was only seen there once, we were very, very pleased with everything involved with Shriners. We waited for over three hours past our appt. time, but as it was explained to us, Dr. Betz spends as much time with each patient to make sure they get the care they need. That was reassuring to me because that meant we weren't going to be rushed out the door in 15 minutes. When we saw our current doctor for the first time he said the same thing to us and we've never been rushed out of the office. I'm finding that some of the best surgeons at Shriners are also the Chief of Staff (Dr. Betz is) which makes them very busy and that tends to make the wait for appts. and especially surgery, seem very long. However, Dr. D'Andrea also works at Shriners and I know you get into her surgery schedule much sooner than you would with Dr. Betz. Several months ago, I talked with a Mom on this forum who is from NY who's then five year old son was treated by Dr. D'Andrea and she had nothing but great things to say. Best of luck.

Mary Lou

KRIS ATKINSON
03-17-2005, 08:49 AM
I am curious to know why everyone would not go to the Shriners for free care? Does anyone know why? Unlike free clinics for general health care, there seems to be no income restrictions at Shriners. Am I missing something? Thanks

Mary Lou
03-17-2005, 11:11 AM
I can't speak for others, but the reason why we didn't go with Shriner's is because we were lucky enough to find an awesome doctor just 20 minutes away from our house. We went to Shriner's because the doctors there are awesome and some of the best work is being done there. However, Shriner's is two hours away from us and we would have traveled there if we hadn't found the doctor we did. I had to also take into consideration the fact that I would be two hours away from all of my family/friends and would not have had the help and support that I needed while my daughter was in recovering from surgery.

Mary Lou

KRIS ATKINSON
03-17-2005, 11:28 AM
I have just found out the approximate cost I am looking at: I had guessed around $10,000-$20,000, but was apparently way off: does $100,000-$200,000 sound more realisitic? That may be one reason some people go to Shriners. Our insurance is $5,000 deductible. The other, as you just said, is the distance: 40 minute drive home from surgery vs 3 hours. Follow-ups are 20 minutes away for my doctor's office, and I assume 3 hours for Shriners. It will probably cost around $7,000 total, after reaching our max, for surgery, vs free at Shriners. If I compare all the incidentals and who pays for things like me to stay while my daughter has surgery, not to mention the uncomfortable ride home, I wonder which is actually going to be better. I imagine alot of people decide purely because of distance. Thanks for your response.

Mary Lou
03-17-2005, 11:36 AM
$100,000 is pretty reasonable for the surgery itself. Jamie's bills total just over $101,000 for the surgery and hospital stay. You also need to consider the cost of follow-up visits (she has had two in the three months since surgery) and she is also in p.t. twice per week. Also, your doctor may want an MRI and/or CAT scan before surgery and they aren't cheap. We are very lucky to have great insurance and although it costs us $25 every time we go to the doctor, it is still much cheaper than the expense of traveling two hours each way, the cost of eating out, the gas, the turnpike tolls both ways, etc.


Mary Lou

Theresa
03-17-2005, 11:36 AM
Kris,
My total bill including doctors, hospital, and everything else came to $250,000. That was 2 weeks in the hospital (it was only suppose to be one week) and 2 operation days.

KRIS ATKINSON
03-17-2005, 12:27 PM
Therea and Mary Lou, I just heard from my insurance agent: It will cost $7,000 for surgeon and hospital if I go through my local surgeon. That is $7,000 more than Shriners, if I understand it right. What do you two think, is this about the amount you had to compare for location and comfort, etc., or is there alot more that I am missing? I assume both place pay for me to stay in her hospital room? Am I fantasizing? Thanks.

Theresa
03-17-2005, 01:41 PM
Kris,

Is that $7,000. your portion that you would have to pay out of your pocket? I just reread your post and saw that it was. My husband wasn't charged for staying in my room at the hospital. You will also have expenses for your own food, reading materials, snacks, parking. Little things like that that add up. I think that I would choose to go the Shriner's route and you would probably be able to do follow ups with a local doctor. Would you be able to get the time frame that you are looking at with going through the Shriner's? That's just my idea, but if you have the money and it's no problem and you feel comfortable with the local hospital then go there. Just remember that sometimes things end up taking longer and costing more than you originally thought.

KRIS ATKINSON
03-17-2005, 02:19 PM
Theresa, thank you for your thoughts! How much do people usually end up paying out of pocket? Someone I know who used my daughter's surgeon said she felt also has $5,000 deductible. You are thinking a little like me, is the trip so agonizing to blow $7,000. In other words, 3 hours is a long drive if you have bolts in your spine, but is it worth $7,000, when it will be at least 40 minutes drive at the closest hospital. Also, as you said, I wonder if the Shriners surgeon has to do the follow-ups. I can't seem to get a call form the doctors, of course, so I am finding most of my info via this web site. Thanks, Kris

Theresa
03-17-2005, 02:41 PM
Kris, I was lucky that our insurance covers in-hopital care at 100%. Do you feel more comfortable with one doctor or the other? Is one more highly recommended? How complex is your daughter's case? These questions would all have to play into your decision as well. I had a 45 minute drive home from the hospital (Houston traffic and roads are not known for being very good) and I don't remember any of it. My husband said that I chatted with him all the way home and didn't have any problems.

nikyergen
03-17-2005, 05:28 PM
Okay,
Here is some more scoop on Shriners. There are things you may or may not know. All the Shriner Hospitals has a care coordinator. That person will help you find a Shrine Club help you with your expenses for travel, meals, and lodging, if you are strapped financially. As far as staying in the rooms, one parent can stay with the child and the other one can stay in a room on another floor at no cost. So, that takes care of any motels. Our Shrine club allows for $3.50 per meal, which is probably different for others, 3 meals per day, to be used at the hospital cafeteria. Which there have only been two meals this week I thought were awful, so I ate salad bar. The $3.50 is more than ample to eat on at the hospital. So, that takes care of meals. Then, if you are really strapped, some of the Shrine clubs will help with your gas to get to and from the hospital. So, that helps with the travel. Our Shrine Club here also offers these same services for appointments, it is not just for surgery.

For us, it was an easy decision. We had to drive 5 hours, one way, for Crystal's surgery, and yes we used the help from our Shrine Club financially. Gee, what have we spent this week on meals, motel, fuel, maybe $50.00. It has been a great help for us. Without the Shrine Hospital and our local Shrine Club, this surgery for Crystal wouldn't of been possible. Crystal's dream came true because of this hospital and the men that raise money to run it. We ended up with one of the best doctor's in the world. Crystal wasn't fond of him, but it was because his accent was so thick she has to really listen to him talk. But, the day before surgery, she thought he was the greatest. Because, he talked to her, not us. Then, the care she has received has been the best I have ever seen a child receive.

So, the decision was simple for us. So, really check into the services your Shrine Hospital/Shrine Club offer. I even sent another mother, that was out of money and not eating, to our Shrine Club for assistance. Guess what, she is eating for the rest of the stay of her child. She was so thrilled that there was someone there to help her out.

Okay, I'm off my soap box on this one, just wanted you to have more facts.

'til later,
Nikki

KRIS ATKINSON
03-18-2005, 08:03 AM
Thank you all for responding to me. I will now start researching individual doctors and try to get visits to the hospitals scheduled for my family. If I get to know the doctor choices more personally, with my daughter in tow, I think I can get her to be comfortable with any surgeon. Right now she gets mad when I consider anybody but Wattenbarger. $7,000 is alot of money, but this is my child's life at stake, not just surgery on a part of the body, but the one that controls all functions of the entire body. If I can find a good surgeon that is as good or better than him, and get my daughter convinced, I could sure put that money elsewhere! I think I will use the research on physicians and see if I can compare their backgrounds, etc., also. I notice Wattenbarger has lots of years of experience but not so many that he is nearing retirement.

mariaf
04-25-2005, 09:05 AM
Dear Nikki,

That's usually me on the soapbox for Shriners! My son had surgery at the Philadelphia hospital in March 2004 and we still travel from NY to Philadelphia for follow ups a few times a year. I simply would not go anywhere else (we are, in fact, lucky enough to have medical insurance right now but in the past we've been in situations where we too were without it for several months so I know what that's like). Over the past year or so I have gotten to know some of the personnel at the Philly hospital and have learned even more about the selfless work that they do. They have made a huge, wonderful difference in all of our lives. Not only is the care free, but you have access to the best doctors, newest technology, etc. I speak from experience because my son had previously been seeing so-called top drs. in NY for a few years before we learned about a procedure being offered only at Shriners. I guess when the focus in not on money, the doctors can really concern themselves with what's important - helping kids!!

I, for one, will be grateful to Shriners always.

Best regards,

Maria

nikyergen
07-06-2005, 03:40 PM
Inam,
Shriners Hospital is for everybody. It doesn't matter what you income is. Everyone is treated like a millionaire. You need to check them out. They are the best as far as we are concerned. We have three children treated by them. No matter how much you make in income, you will be treated just like everyone else and never see a bill. It is supported by the Shriners Organizations all over the world. It operates soley on donated money. My husband is a Shriner, but we had never thought about them until another Shriner asked us why we weren't using the Shriners Hospital. I am so glad we were encouraged to use them. You don't have to be anyone special to use them.

Please feel free to call on of the hospitals, you can get their phone numbers off of the internet.

Nikki

mariaf
07-11-2005, 10:21 AM
Yes, anyone can get the very finest in orthopedic care at no cost at Shriners Hospitals. We just returned from the Shriners annual convention in Baltimore. We are not Shriners - but went to attend the opening ceremony and to show our support. Our son had surgery at the Philadelphia Shriners Hospital in March, 2004 and continues to be monitored by the terrific doctors there. We are fortunate enough to presently have medical insurance and, even though we live in NY where many so-called top doctors are, I would not bring my son anywhere but Shriners Hospital in Philadelphia because I saw how much more they had to offer. I guess when you truly just want to help kids, miracles can happen. I'd recommend them to anyone.

Celia
07-11-2005, 03:51 PM
Maria,

I was wondering about you, I remember a conversation we had a while back about your son's operation with vertebral body stapling ? How is he doing ? I haven't come across too many parents whose children had the procedure hence my curiosity, although.... this could be a good sign i.e., the procedure works very well and therefore parents don't need the support :D




Celia

mariaf
07-12-2005, 08:24 AM
Hi Celia,

My son is doing very well 16 months after surgery. His curve has gone down about 7 or 8 degrees. I noticed a bit of a difference (for the better) cosmetically - and he's not spending 22 hours a day in a back brace!

While I realize that he still has a long way to go and anything can happen, I could not ask for more - and am very, very happy we went ahead with the stapling. In addition, the more I see of Shriners Hospital and the doctors there, the more I know that I wouldn't want anyone else looking after my son.

Best regards,

Maria

kennedy
12-18-2005, 04:57 PM
I'm A Shriners patient In Sacrmento

mariaf
12-23-2005, 11:57 AM
Then I'm sure you are in great hands! I'd love to hear more from you. Did you have surgery at Shriners? My son, now 7 years old, had surgery in March of 2004.

All the best to you,

Maria