Surgery cost!

[KRIS ATKINSON]

Nikki, I have heard from a friend that she chose the local hospital over Shriners because of its close proximity, even though a friend of hers was willing to sponsor her thru Shriners. We do have an appointment with Shriners April 15, and we are considering it to be a 2nd opinion, since my daughter is adamant about having her surgery with the doctor she sees now. I would hate for my daughter to refuse the surgery or get more anxious by us trying to force her to choose Shriners for the money. I guess I will know more after our second opinion. We had decided that the convenience of not having to drive so far all the time and pay for possible incidentals would be worth the $7,000 out of pocket, but $29,000 is extreme! I have heard that Shriners pays as needed, also, so I am not sure how much of our bill they will actually pay. I was also told that our doctor consults with Shriners doctors, and used to work at Shriners Texas, years ago, so it makes me think he is at least as good as those doctors. Our clinic said they fly people in from other countries, etc., for surgeries. Our doctor is about 50 years old, which is a comfortable age to me in experience and not too old to still do a good job, I feel. I seem to be spending 16 hours a day reading and researching this issue. I feel it is important and am actually beginning to be glad I have over 2 more months to know as much as I can. I notice we have to examine lots of stuff if we want all that is best. What a nightmare! But worth it all! Thanks. Let me know what you think of what I said. Kris

[Mary Lou]

We took our daughter to Shriner's because of the reputation of the doctor (Dr. Randal Betz) and the free of charge aspect was just a bonus. We took Jamie to five different doctors and we were very pleased with Dr. Betz and another doctor who is just 20 minutes away from home. Dr. Betz is about 2 hours away. We are lucky to have very good insurance, and the travel expenses really played into our decision making process, that plus the amount of school Jamie would have to miss to travel to Philly for appts. etc. We chose Dr. Segal, who is the doctor 20 minutes away and have never regretted our decision. If we have any questions/problems, we can always hop in the car and see or speak to Dr. Segal directly. We couldn't do that with Shriner's. Dr. Segal actually asked us why we didn't stay with Shriner's because we were in excellent hands and we told him the truth. However, I must say that if I hadn't found Dr. Segal, we would have traveled to Philly to stay with Dr. Betz. So, what I'm saying is that for some of us we were just looking for the best doctor, and it seems that some of the best doctors are located at Shriner's Hospitals. Trust your instincts. If you and your daughter feel good about a specific doctor, go for it, if the out of pocket cost isn't too much to handle.

Mary Lou

[nikyergen]

Kris,
Shriners is not a pay as needed. They pay the entire bill regardless of income status, race, insurance status, etc. They are not allowed to even bill your insurance for your daughters treatment. I wish I could get that through people's heads. We have insurance, excellent insurance, except when it comes to some of these surgeries. We are middle class people. We don't even see a bill from them. I don't know why our society has created people that feel there is some hidden costs. There are thousands of men that work hard all year long to raise money to support these hospitals. Why is our society so affraid of something that is free for everyone, regardless of you income status, race, insurance status, etc? We have used them since last fall and haven't seen one bill, and never will see the bill. Your child will also get all follow up care, or additional orthopedic needs paid for at Shriners until she is 21, as long as she is diagnosed by the time she is 18. I guess I look at the cost of gas, and yes it is rising, a motel bill once in a while, and a few meals. That is way less than $7,000, and way less than $29,000. But, if we have a time that we can afford those expenses, our local shrine club pays for it for us. Your current doctor will charge you every time you come in the door. So, that all has to be added to the $29,000.

The Shriners hospitals operate soley on interest from the monies they have invested. It would floor you at the amount of money they have invested.

Yes, Shriners will fly kids and one parent in for treatment. There were two children that came into the hospital while we were there. One from Arizona, one from Alberta, Canada. Shriners provided those airline services for them. They also help if you need assistance to pay for gas, meals, motels, etc. I was there without my vehicle, because my husband had to come home to take care of our cows. They took Shriner men took me anywhere I needed to go. We drive 5 hours to go to appointments. Those appointments are not a trip that you will be making weekly. We make the trip once every three months. Our local Shrine Club provides us with a motel for one night and gas to and from on our trip. They also provide us with meals at the hospital if we need them.

The only way you will know exactly what your insurance will pay is when they get the final bills. They will give you an estimate, but that is all it is. There are lots of incidentals that they only pay so much on. It's called customary and reasonable costs. You get to pay the rest.

When you go to your appointment, be sure to ask the person at the registration desk how much of your daughters treatment you will be required to pay and let me know what they tell you. They will ask you some income questions, but that is for their statistics records on who uses Shriners hospitals. That is the only purpose of that information. They ask you if you have insurance also. The only reason for that is if your child should need services other than what they do, remember they are orthopedic only, they can bill your insurance for those services. That is only done in a case that after surgery your child should have to be treated for something totally not related to the surgery. That is a rarity though.

I am so sorry about getting on my soap box again. But, I absolutely hate it when people give people the wrong information. My husband and I are extremely involved in Shriners, and were involved before our need for their services. My husband comes from a family line of Shriners, so we are carrying on a family tradition. So, please don't think I am a you know what. I just want you to have the correct information. You can call them on Monday and ask them all the same questions too. They will answer all of your questions.

We let our daughter make some of the decisions on her surgery. But when it came to the financial end of it, because we have to pay the difference, we made that decision. Crystal didn't like her doctor until her pre-op appointment. When she asked him questions, he answered to her directly, not us as her parents. She thought he was pretty neat then and was glad with the decision we made. She told him the day after surgery, she would have him do it again if he had to. We hope not. She is anxious for the other two surgeries she has to have. And, is very anxious for him to do them.

I didn't mean to blow you out of the water on Shriners, but I want you to have as much information as possible. Too many people are under the impression that you are and it isn't true. I apologize for my abruptness.

Let us know how you appointment goes. You are in our prayers.

'til later,
Nikki

[Mary Lou]

Hi Nikki.

I agree with you 100%. Shriner's Hospitals and the men who raise the money are awesome! When we took Jamie to Shriner's we weren't even sponsored by anyone. I found out later that my husband's uncle is a Shriner. In fact, we took Jamie to a regular appt. with our family doctor and there was an application sitting in her file. He asked why we were going there and I told him. He said, ok, let's fill out the application so we can get it sent in and get an appt. I told him I already filled out the paper work and we had an appt. scheduled! He was surprised. They are willing to work with you no matter what. Once I talked to my husband's uncle, he told us that there are Shriners who will pick us up and drive us to our appts. which not only saves on the gas, but also the wear and tear on my own vehicle, plus less stress of traveling through the bigger cities.

I am glad to hear that you try to cover the cost of your hotel bill, etc. as much as possible. When we took Jamie, they ordered an MRI and a CAT or CT scan. We had both tests done closer to home,(all totaled it was three appts. on three different days) as a convenience for us, but also I figured if our insurance would cover the cost, that would be one more MRI and CAT scan that could be offered to someone else at Shriner's who needed it and that much less money that needed to be raised by them.

As for your comments about being on a soap box--stay up there and keep talking! So many people don't know about Shriner's and they really need the orthopedic care, but can't afford it.

The doctor at Shriner's was our fourth opinion and the surgeon who did the surgery was our fifth. We had some not so good experiences with doctors before going to Shriner's. That's why it was very important that Jamie like her doctor. Of all the doctors, the one who did her surgery was the one Jamie and I both felt most comfortable with, trusted the most and most importantly, the most knowledgable, not only about her back, but about a condition called CMT that we think Jamie might have that contributed to her Kyphoscoliosis.

Mary Lou

[nikyergen]

Mary Lou,

Thank you so much for your support. I get frustrated about it sometimes.

How is Jamie doing? Crystal is doing great. She will be 3 weeks post-op Tuesday. She is going to try to go to school tomorrow. She is starting to go stir crazy because she was home from school before surgery because of all the kids at school being so sick.

How long did it take Jamie's ster-strips to come off? Crystal has her prom on the 16th of this month and really wants them gone. Can we slowing start taking them off?

Anyhow, thank you for your support on the Shriners stuff. Too many people just can't believe it's free and there are no unexpected things that come up.

'til later,
Nikki

[Carmell]

Hi Nikki,

With multiple back surgeries under our belts, we've learned a few tricks about steri-strips and such. Since Crystal is almost 3 weeks post-op, you could safely rub a layer of bacitracin/neosporin over the steri-strips before she goes to bed. By morning, there will probably be several steri-strips off, with many more (or all) to follow in a good shower. If they all don't come off with one application, re-apply about 2-3 days later. The ointment also helps keep the incisions soft and less itchy. Braydon has very dry skin and the itchy-ness used to be a big problem for him. A good moisturizer rubbed into the skin (not over the incisions) is a nice way to end the day - for both of you. I hope Crystal has a great prom! How exciting! I'm glad to hear she's feeling well enough to go to school. Great job both of you.

[nikyergen]

Carmell,
Thank you so much for the great tip. We are going to do it. Crystal was pretty excited that something so simple can get those strips off. She is pretty excited about going to prom. Her date is an old boyfriend, they haven't gotten over each other, and have always remained good friends. He came by after his mom knew she was home from the hospital. She was so thrilled, while he was here he asked her to the prom.

I hope I didn't offend anybody about the Shriners thing, but when you work as closely with it as we do, besides using it for orthopedic care, it is hard to just sit and hear people give other people misleading information. I know without Shriners our girls wouldn't have gotten back treatments.

How is Brayden doing? He just had another surgery didn't he. Or at least that is what I thought I read. I don't know how you have survived all those surgeries. The first one was tough enough, and to realize we still have two foot surgeries for Crystal. I keep praying my youngest daughter continues to wear her brace and that my middle daughter's curve doesn't get any worse.

Thanks again for the great trip.

Love and prayers to you all.

'til later,
Nikki

[susannajon]

Hi Nikki,

Our doc insisted on changing the steri-strips before we left the hospital, which I was glad for because he also told us to go ahead and pull them off after 5 - 7 days of being home. I had very carefully watched the nurse do it, so I was comfortable repeating her technique. Put lots of bacitracin/neosporin on, then follow with a nice long shower with the spray going right in those steri-strips, followed by more bacitracin/neosporin. Then peels those bad boys off using steady pressure. Start on the edges and peel toward the incision. Peel from both sides so there's just a little dot of sticky over the actual incision. Then just gently pop them off. hope this works, because I'm sure she's anxious to have them off by now.

Hugs to you and Crystal,

Susanna

[KRIS ATKINSON]

Scoliosis-mom, if you are out there, I re-read your posting about your $29,000 out of pocket expenses. I have figures ours in the future to be $7,000, assuming I thoroughly check that everyone is on our insurance plan. My clinic had to get approval from my insurance before they would even allow me to schedule surgery, for this June. I have also learned over the last few years that sometimes a doctor I use or plan to use does not accept our insurance. Fortunately, I have gotten used to asking when I make new appointments any more to make sure they accept our plan. I know what you mean about all the places that bill you out of the blue. I get surprise bills from hospitals, labs, technicians, etc., when all I did was a 15 minute exam. I haven't experienced being billed by companies that don't accept my insurance, when the main company I make my appointment with does accept it, though. I am looking into Shriners hospital more aggressively now after your incident. Can you tell me how this happened to you, as my daughter so far is aggravated with me for even considering switching from her current surgeon. Thanks, Kris

[Mary Lou]

Nikki,

Jamie is doing great! I think she is having a harder time right now than she did right after surgery. The weather is getting nicer and she wants to ride her bike, ride our 4-wheeler, etc. and she isn't allowed. She is done with p.t. She had serious issue with the steri-strips! 3/4 of hers were still on when she was getting ready to go back for her 7 week check-up and I told her they had to come off or else the nurse would take them off. I tried Carmelle's suggestion and we didn't know we were supposed to but her in the shower after the bacatracin (sp?). What I ended up doing was using a water bottle to totally saturate them and they came right off, so I guess it was the same as using the shower.

Tell Crystal to have a great time at her prom, but remind her she had major surgery recently and she does need to take it easy. What kind of dress is she planning on wearing? I'm curious if she is going with an open back or if she wants to cover up her scar. Jamie doesn't mind her scar showing and she doesn't mind showing her scar to people. In fact, we had a birthday party for my other daughter on Friday and a friend of hers was her and we found out she too has Scoliosis. She didn't have her brace on and Jamie was quick to show her the scar and tell her about the surgery in order, I guess to convince her to wear her brace. I'm glad the scar isn't an issue for Jamie.

Tell Crystal to keep up the good work and let us know how school goes this week.

Kris,

PLEASE, please get at least a second opinion before letting anyone do surgery on your daughter. I know you don't want to hurt her feelings, but you are the parent and I would never allowed this surgery to be done without at least two opinions. Trust me, your daughter will be mad at you, but she will get over it.

Mary Lou

[nikyergen]

Mary Lou,
Crystal is wearing a hot pink/with crystal studs, open backed dress that laces part way up. I told her if she wanted to cover up her scar we could. She said "Nope, I'm not ashamed of my back anymore." She want everyone to see her back and see that she is much taller and straighter. Such a brave kid. All these kids are brave.

Crystal hasn't called from school yet today. I have called several times and talked to the secretary. She said she is doing good. She has come in to lay down a couple of times, but wasn't ready to come home.

I'll keep you posted.

Kris,
Hope all is good with you today. Crystal was up early and anxious to get to school. First time in 6 weeks, three of which was before surgery and three weeks after surgery.

I hope you are having some success with your daughter on doctors. I know we want them to be able to choose their doctor, but on the other hand Craig & I felt that Crystal got to make the decision on her surgery, so we could make the decision where it was done. Also, Shriners has more than one doctor. You may want to see more than one to find one you like. You don't have to stop at the first one you see. They are okay with the fact maybe personalities clash and stuff and are willing to let you see another one of the doctors.

How is your research going? It can be so mind boggling sometimes. I did get to the point that the only placed I looked was on these message boards. These are real life experiences that I could talk about.

Keeping you in our thoughts and prayers.

'til later,
Nikki

[pat]

Shriners

Wow, I loved reading all your posts about Shriners' hospital, we have absolutely no experience with them at all; we head there tommorrow for our first appointment. But it's the one in Massachusetts, and I've never read any posts about the Shriners' in Mass?! Anyone ever been to the one in Mass, or heard anything about them? Thanks!
Pat

[lrmb]

Good luck tomorrow Pat!!
Laura

[nikyergen]

Pat,
Good luck to you guys on your appointment at Shriners tomorrow. Let us know what you find out and what you think. I really like the fact that everything from doctors office to surgical suites are all under one roof. After Crystal's surgery I could walk down to xray and ask to see her films. They were more than happy to pull all the comparison films out and show them to me. I have heard lots of good things about all the Shriners and our own personal experience was wonderful.

Praying for you.

'til later,
Nikki

[Mary Lou]

Nikki,

Way to go Crystal! I'm glad to hear that she isn't afraid to show off her back. These kids have been through so much already, they shouldn't have to worry about hiding their scars. I'm glad her day went well yesterday.

Mary Lou