Please post about your Shriners Hospital Experience

[nikyergen]

To all,
There are a lot of questions about Shriners Hospitals. Would those of you that have had experiences there, because they are one of the top hospitals in the nation for pediatric orthopedic surgery, please make a post of what Shriners Hospital you went to and how your child faired, and how you faired, at the hospital. Maybe include start to finish, even though some are just getting started and some are getting finished.

I think this would help others that are considering using Shriners Hospitals with their decisions.

'til later,
Nikki

[nikyergen]

We use Shriners Hospital-Portland for all three of our daughters. They all are in various stages of kyphosis/scoliosis. We have been treated incredibly well. The doctors and nurses have been wonderful to work with. Crystal had surgery 3/15/05 and I couldn't of asked for any better care for her. Her pain was always the number one concern. They didn't want her hurting at all. The pain meds were also making her sick to her stomach. They gave her something for that too. And, the best part. You should see her back today. It is absolutely beautiful. I like the fact that all my childrens records, doctors, nurses, surgery suites, and patient rooms are all under one roof. My youngest daughter wears a brace. Anytime we need adjustments on it, I call orthodics and they make an appointment for her with someone that is closer to where we live so we don't have to drive 5 hours for a five minute adjustment. It is at no cost to us. I would never even consider taking any of my children anywhere else for pediatric orthopedic work, of any kind, to any other facility. They have some of the top doctors in the world. A lot of them teach various orthopedic surgeries and techniques all over the world.

'til later,
Nikki

[ScolioGirl]

Great Experience

I use a Shriners Hospital and it's a great experience. The doctors and nurses are very nice and understanding about everything. They are extremely helpful. I was recently told I'd most likely have to have surgery for my scoliosis, and a nurse told me they could arrange it so I could talk to some other girls who had gone through it. That's one example of what a caring place they are. I really can't believe it's a free service.

[Mary Lou]

Nikki,
Okay, here goes, but I'll apologize in advance for the length. My daugther was diagnosed in Aug. 2003 and had spinal fusion w/instrumentation Dec. 2004 for both Kyphosis and Scoliosis. The doctor at Shriner's was our fourth opinion out of five. The reason we went to Shriner's was not for the free care, but because of Dr. Randal Betz, who is an excellent surgeon. I had researched him and he came personally recommeded to us from one of his patients. I still find it amazing that you can go to Shriner's no matter what, and receive care from some of the top surgeons in the world! After seeing several doctors (we saw three out of four) at our local children's hospital, we decided to give in and travle to Philly to see Dr. Betz. What an awesome experience! Because it was in a big city and I had no idea where I was going, we left extra early which put us at the hospital about an hour before our appt. time. I asked someone at the security desk if there was a cafeteria or somewhere where we could go and wait. He got us registered early and sent us to the game room/arcade. All of the games were free and we got to talk to another young lady who was in the hospital at the time who had Scoliosis and was also a patient of Dr. Betz' which was very reassuring. The gentleman at the desk asked us if we had eaten lunch yet, which we had and offered to provide us with lunch. He gave us directions not only to the game room, but also to the waiting room for Dr. Betz and offered to call/page us closer to time for our appt. if we needed him to do so. Closer to time we went to the waiting room and talked to several people who have been using Shriner's for years and none of them had nothing but positve things to say about the hospital and the doctors/staff there. We went to x-ray and the kids were offered things to do while they waited. Again, more people who reassured us that we were in good hands. When we went to Shriner's we were at the point of needing surgery and were very scared, so it was especially nice to be reassured. Here's the only bad thing I can say about Dr. Betz/Shriner's (and we've experienced this with our doctor as well) is that we waited for over two hours past our appt. time to be seen! What I came to find out and appreciate is that the doctors don't rush you out of the office after 15 minutes. They will spend as much time with you as you need, regardless of what time it is, etc. To me that is an awesome doctor who will do that. I mentioned to Dr. Betz a condition that runs in my husband's family and is sometimes a cause of Kyphosis and/or Scoliosis. He talked at length with us about that, which until we met Dr. Betz and our current surgeon, no one else acted like they even knew what I was talking about let alone the connection between the two. He re-examined my daughter and talked more about the condition. Dr. Betz talked directly to my daughter (as does our current doctor) which we both appreciate. We were informed that she did need surgery and that he would be willing to do the surgery. We were given the opportunity to ask more questions and given instructions to call the next day to set up our next appt. and get things started for setting up surgery, and to set up an MRI and CAT scan, because everyone else had gone home at this time except Dr. Betz and his staff, yes they stayed as late as the patients needed them to. We were asked if we needed a place to stay that night, or any other assistance.

Did we decide to have surgery at Shriner's? No, we didn't. We had an appt. scheduled with our current doctor for after our appt. at Shriner's and what we found was that he was just as caring, concerned, and experienced as Dr. Betz. In fact he aske me why we weren't staying with Dr. Betz. For us, it came done to the fact that I would have had to be two hours away from my family/friends during my daughter's surgery with no one able to be there with me the day of surgery or the first three to four days after surgery. Even with saying that, I would have done that if it meant having the best surgeon for my daughter. That was the most important part of all of this.

Although our experience with Shriner's was brief, it was well worth it to have gone there. It was an experience that will stick with us forever and I still recommend Dr. Betz and Shriner's to anyone who asks. The experience at Shriner's, if nothing else left us know for sure what we needed for our daugther and what we should expect from doctors/hospitals and we accept nothing less than the best for our daughter.

Mary Lou

[KRIS ATKINSON]

Mary Lou, how much did surgery end up costing you, since you decided not to use Shriners in the end? Kris Atkinson

[Mary Lou]

Hi Kris,

Jamie's surgery/hospital stay was over $100,00. If I totaled the cost of her Milwaukee brace (this brace alone cost over $2000), her Boston brace (this one cost almost $1600),all the x-rays over the past 1 1/2 years, doctor appointments, MRI, CAT/CT scan, etc. it would come to well over $110,000, I'm sure and we aren't done yet. These figures don't include physical therapy as we haven't started receiving statements yet.

How much did all of this cost me personally? Let's see: we pay $25 for every visit to the orthopedic doctor and while in the brace our family doctor followed her and every visit cost us $15 and some visits were as close together as three weeks, we paid over $350 for her Milwaukee brace, we paid almost $300 for her Boston brace, $15 per physical therapy visit, twice per week for six weeks, so if I had to guess, I'd say we paid several thousand dollars out of pocket and that doesn't count things like gas, tolls to travel to different doctors, and all of this is with EXCELLENT insurance.

I would estimate in just the first year, she was seen by a doctor at least a dozen times and this doesn't even count going to the gentleman who made her braces and who would do adjustments several times a week when she would get a new brace. As you can see, there is a lot of expenses that people don't think about.

No one can make your decision for you, but it helps to have the info. that is shared on this forum. Your family needs to be comfortable with your decision, no matter what. Good luck and if you have any more questions, feel free to ask.

Mary Lou

[nikyergen]

Kris,
Just a little more information. If your daughter has to have physical therapy, or other additional services, Shriners will arrange them close to home for you and they still pay the cost of the services even though you didn't get them directly at the hospital. They have great outreach clinics and understand that people come from many miles away for services and will arrange to have some of those services close to you home town.

We don't have to drive 5 hours for a 15 minute brace adjustment. They have someone here do it for us, and Shriners pays the bill. Crystal is having some drainage out of her incision and when I called the hospital this morning about it they gave me a choice, if it doesn't subside, that we can either take her back or they would have someone here take care of it. I don't know what we'll do. We are praying that it clears up. But if it doesn't, we'll probably drive to Shriners, as we don't have much confidence in our medical society here, because they have missed Crystal's problem for a lot of years.

I know I haven't given you information all at once. But, it is hard to remember it all at once, so when I read someone else's post and it reminds me of something I try to send the facts on to you.

'til later,
Nikki

[Lura]

Hi everybody!

We went to Shriner's Hospital in Spokane, WA. Our experience is as follows:

We checked in on Easter Sunday around noon. The roads from Butte to Spokane were awful (lots of rain). We arrived and the woman checking us in was very impersonal and business like. We were put in Alex's room and and other than a resident doctor stopping by to literally tell me my child could die, be paralyzed, contract HIV or hepatitis "so please sign that I have warned you of all the dangers", we spent 2 hours alone waiting to be welcomed or put at ease. I proceeded to have a mini breakdown, yelled and cried at the nurses, threatened to take my child and leave, then calmed down.

Following my tantrum (which I later became aware everyone in the hospital had gotten wind of), everything went so much better. I don't regret my fit, it seems our care coordinator totally dropped the ball, which I feel was completly unacceptable. The hospital administrator sat and talked with my fiance and I at length and assured us this was something that rarely if ever happens. Alex's doctor isn't accustomed to explaining himself to a mom, so the conversation before surgery was very tense, but he gave me the information I was seeking. This doctor, whom I thought had a bed side manner which left a lot to be desired, turned out to be an amazing surgeon, and by the time I left, a very caring human being. The nurses were outstanding!!! One sat with me for two hours the night before surgery, calming my fears, showing me pictures, and basically comforting me through a very long, frightening night. This nurse was to be off at 7am the morning of surgery, and stayed to take care of Alex (and me) until he went in to surgery at 9am. We didn't have one difficult nurse, they were all very kind, compassionate, and eager to make Alex and myself comfortable.

I would rate my experience at Shriners (Spokane) an "A", if our welcome had been less stressful, they would receive an "A+", but I guess we all deserve an off day! I am not a "high maintenance" person, but rather an educated, single mother of a child with special needs, who approaches everyone I meet with respect and dignity in the hopes of being treated the same.

I hope this helps!

Lura

[KRIS ATKINSON]

Hey all of you, keep the info on Shriners coming, please! It is really helping me, as I take my daughter to Shriners April 15 for a second opinion. I will include my thoughts as well, after I visit next week. Thank you, Nikki, for starting this quest!!!! Kris

[nikyergen]

Kris,
I am glad you were so open to considering Shriners. I was like you what can I afford, what can I not afford. The thing that really helped me is that my husband and I are very involved in Shriners on a personal level, and were before we needed their services. I hope you have a good first experience. We did. We had all three of our daughters in for initial diagnosis appointments on the same day. They made the hard facts as easy for us as possible.

Let me know how things go. And, be sure to post your experience, good or bad.

'til later,
Nikki

[Stumped1]

Well liked hospital

Hello, my son has scoliosis, we go to Shriners in Lexington Kentucky. We have been going there since 1996. we have never gotten a bill and have always been treated with respect. Shriners is a a wonderful, wonderful place to have children treated. I wouldn't change my sons place of treatment for nothing in the world. We have great insurance through my husbands job and what ever his insurance doesn't cover mine picks up and even though we have great insurance, we still chose Shriners.

[KRIS ATKINSON]

Good news! My daughter fell in love with Shriner's Greenville!!! Bad news is her curve is getting worse, in lieu of her 23/7 wearing of her brace. Not just worse, but it is getting more of a curve quicker than it was, apparently. March 1, 61 degrees, after a 24 hour rest from the brace. April 15, 68 degrees, without a rest from her brace (took it off immediately before the x-ray). She has rather severe Scoliosis and Kyphosis. Didn't know till Friday that her rib hump was not normal with Scoliosis. It is Kyphosis. Will have posterior, use her own bone grafts, which have a better chance of fusing in the long term, use donated blood, rather than depleting her own blood and weakening her before surgery. This new method of not pre-donating is newly decided during the last several weeks, apparently a decision that Red Cross is having each clinic review for themselves just now. They will probably remove some ribs, and also probably do anterior surgery as well. At Shriners, she will be in about 2 weeks, including the time pre-surgery. They said they do not submit anything to my insurance unless she needs an MRI from the clinic that they get it from. They even asked me if I wanted to budget about $10/day for myself to eat for 2 weeks while I stay with her at the hospital or if we needed that financial assistance!!! My husband said we would handle that ourselves. We save $7,000 right up front by going to Shriners! I am so glad my daughter is happy there. Doctor Pete, her surgeon at Shriners, told us there are 3 surgeons that are all about equally skilled/qualified to perform this surgery in this area: Charlotte/Greenville, SC. The surgeon she was sceduled with locally, Dr. Wattenbarger from Orthocarolina (formerly Miller Clinic), Dr. Allen, and Dr. "Pete" from Greenville Shriners. That does not include Duke, etc., I think. Therefore, 2 of 3 experts in this area are at the same hospital we have chosen to have surgery at. She will probably have surgery in July. I will share further in another email. Kris

[KRIS ATKINSON]

Here is the next email. I find that if I type too long, I seem to loose the connection and the message doesn't get sent. Doctor Pete Stasikelis, from Shriners, recommended not basketball, swimming, bike riding, etc. for 1 year. Basically, he is extremely strict compared to alot of other physicians. I like this idea, though. Better strict with his recommendations than have her trip while chasing a ball and paralyze herself. However, he also recommended for noone to ever snow-ski at all, because of a high incidence of knee injuries. He did say that other doctors ski, but he and his family won't do it. So, that will be one thing we will do in spite of his fears after waiting a year. No horseback riding ever, he said (hmm, that's a toughy to avoid). I can see the reasoning, though. Jerking the spine as you ride would really play havock. Maybe we will do gently riding after a year of waiting. Also, she can get in water to relax, he said, so we will see what she does with her body when she "relaxes". She hates racing n swim teams anyway, so that shouldn't be too bad. May mean no diving off boards at all. So relieved that she has made a decision so quickly that also helps our finances. Take care all, Kris

[nikyergen]

Kris,
I am really sorry to hear about your daughters curve getting worse so quickly. But, am glad you felt good about Shriners. I agree with some of the sports activites your doctor mentioned. However, I do disagree with the horseback riding. There isn't any jerking that goes on when you ride. If you are jerking, then generally you need to sit you seat deeper in the saddle and relax at the hips and waste. Oh well, that's trivial.

Anyhow, glad to see your experience was a pleasant one. I found that $3.50 per meal per person was very ample. I generally took stuff back to the room for a snack during the day with that much money. I was never hungry.

Anyhow, keep us posted on your daughters surgery date. You are in our prayers.

'til later,
Nikki

[KRIS ATKINSON]

Thanks Nikki. Thank you for pushing me to check out Shriners!!! I did corner them on my information from the Miller Clinic. It appears that the nurses or whoever handle the phone conversations are misinformed about Shriners. They still think of it as only for indigent patients. They also are not aware that 2 spine surgeons at Shriners Greenville have had the same training and specialised year in Pediatric Spine Surgery that Dr. Wattenburger had. I may find a way to gracefully reeducate his staff so others can discover the good of Shriners. Shriners also keeps us later, to give my daughter more opportunity to heal better before her long ride home. That is one reason they keep her so long, because she will be better able to handle the 2 hour drive. We are one of the closest patients, in fact, as they are used to patients with 5-6 hour drives one way. So, I am fortunate that we live where we do. I got all my questions answered, after spending 6 hours there. My daughter was thrilled with what she considered a relaxed atmosphere. How often do people come home happy that they go 6 hours of attention at a doctor appointmenr!? I was impressed. She continues to wear her brace full-time, although the doctor said it is essentially useless now. She feels better with it on than off, and I figure it can't hurt to wear it, but maybe even slow down the curvature a little. Thanks again for sticking to it about Shriners!!! Kris