Questions about shiners hospitals

[kmom]

In January (after my pointing out a hump on my daughter back to the peditrician & subsequent visits with two specialists) my 14 year old daughter was diagnosed with three curves (c-47, t-60, l-40). The specialist has recommeded surgery to correct the cervical and thorasic curves, leaving the lowest four vertibre un-fused.

I have several concerns at this point. My daughter has (since birth) a sunken sternum. I recently read at the Johns Hopkins site, that children born with this are more likely to develop scoliosis....? My pediatrican never told me this, and every time he mentioned the sternum, I asked if there was anything I should be concerned about. He also did not check for a curve, and during her most recent annual physical, as he was leaving the room I asked him to please check the hump on her back. Of course her curve is very visable, even without the x-rays...He looked shocked. AFter the x-rays I just cried, her back looks like a roller coaster. How could this have gone un-noticed by me and her doctor, without a chance for bracing...

Good news, we were just accepted at the Chicago Shriners Hospital and my daughters next appointment is June 9th. Can anyone tell me what to expect at our first visit to Shriners??? I know her surgeon wants to do the surgery this summer.

[nikyergen]

kmom,
We use Shriners Hospital. All three of our daughters have scoliosis. Our 16 year old is 14 days post-op. Our middle daughter has a very slight curve and our youngest daughter is in a brace. I can't tell you how pleased we are with the care we got at Shriners. We are there every three months because of the different issues with each of the girls.

At your first visit they will do xrays, general physical stuff, bending test, possibly an MRI, and then you will talk with the doctor. Keep in mind though, we saw Crystal's surgeon on the day of diagnosis and didn't see him again until pre-op the day before her surgery. However, his nurse gave us her business card and welcomed us to call anytime we had a question. She was wonderful in answering our questions. Shriners only does pediatric orthopedic surgeries/care. They have doctors that specialize in spine treatment and other orthopedic treatment.

Shriners Hospital will also address your daughters sunken sternum. While Crystal was in the hospital, there was a young boy that was in to have his sunken sternum corrected. Please be sure to have all those issues addresses. Crystal is still facing two more surgeries, one on each foot. But, the hardest surgery is done. My middle daughter has problems with her knees and legs and they keep a close eye on them too.

I guess what I really like about Shriners is that they only do children. So, when your child has a surgery, it is all kids on the floor. There were about 30 kids in the hospital on one night when we were there. The pain management team is so good at their job, that not one child was crying because of pain. I also enjoyed being able to meet other parents and soon realized that we all had fears of surgery for our children.

Please really consider using Shriners.

You are in our prayers as you go through this trying time.

'til later,
Nikki

[roxie]

Response to shriners question

I am having surgery at shriners this summer On June 23. When I first found out i was a mess i mean i think anyone would if one doctor came in and said you don't have to go and then another came in and said i need to go. I asked God what did i do to deserve this but the staff at shriners is 100% the best and this has been the most happiest thing to do in my life

[SarahH]

I don't know personally about Shriner's but I think any hospital that specailizes in just children should be fantastic! We use Children's Hospital and they do great work! Good luck, your daughter and yourself will be in my thoughts!

[nikyergen]

With Shriners, regardless of your income status or insurance status, you child will get the best surgeons in the world working on her. You won't have to worry about any hidden/unexpected costs that insurance won't cover or you can't afford, because there are no hidden/unexpected costs. The care your child gets is top notch.

Let us know how things go. We are praying for you.

Keep us posted with how your appointment at Shriners goes.

'til later,
Nikki

[Alaskan]

shriners

Hi, I had surgery with Shriners hospital in spokane when i was 15 I'm now 30 and having problems with my back. I called my surgeons office wanting a reference to a good spine clinic, I left a message and to my surprise Dr. Osbold called me back personally. I was shocked that he called me after 15years. Not enough can be said about Shriners! I live in Alaska and they paid my airfare and my parents when i had my surgery, your in good hands!

[kmom]

Hey, Thank you all for your imput. I am confident that Shiners is the place that we want to be. Our next appointment isn't until 6/9, which seems like forever.

She is doing well now, however, was in a lot of pain a few weeks ago???? We tried motrin and darvacet (sp) but nothing seemed to help. The doctor basically said that there wasn't much more they could do for the pain (except physical therapy). She is very athletic and does not let much slow her down, so we were all concerned about the amount of pain she was having. I guess we are lucky because is seems to come on for short periods of time and then she is fine again. Has anyone else had this sudden pain that comes on for a few days and then leaves?

Thank you all for your support

[nikyergen]

Kmom,
I know it will seem like a long time until June 9, but it will be here before you know it.

Crystal just had surgery 3/15/05. She is doing great and is headed back to school on Monday. I am so impressed with her recovery. The most important thing was that she, like your daughter, is an athlete and was in excellent condition for surgery. I also feel athlete's tend to tolerate more pain, and they recover quicker too. I almost feel like we are talking about the same kid. I think one reason Crystal's surgeon put her in a brace after surgery is because he wanted to slow her down a little, in addition to adding additional support for her fusion.

Crystal had an extreme amount of pain in her back. This got pretty tough for her during basketball season this year. It would last 2, 3, 4 days and then ease up for a day or two. The doctors all said that it wasn't caused from her back deformity. I beg to differ with them. Her back hasn't hurt since the day she had surgery. Yes, she has surgical pain, but not the continuous pain from her back. I called her doctor's nurse at Shriners and asked what we could do to relieve some pain before she had surgery. She had me give her 2 Aleve in the morning and 2 in the evening for 10 days, and then give them to her as needed. It seemed to really help. However, if your daughter has surgery, you will want to discontinue this before surgery and she can't have it for a while after surgery. It thins the blood and will slow down the healing of her bone graft. Crystal is off almost all her pain meds for the first time in 8 years. Crystal feels so much better, she is wondering why people said she would be miserable after surgery.

I will keep you in my prayers. Keep us posted on how things are going.

'til later,
Nikki

[kmom]

Nikki:

Thank you for telling me about your daughter. I have read many of your posts over the past month or so. It is always good to hear from the parents on the other side of surgery. It makes it so much easier for those of us waiting.

My daughter plays travel fastpitch softball, volleyball, high jump and soccer. We were initially worried because she will be going to a lot of college recruiter tournaments this summer, and now we just don't know what is in store for her future. Everyone says that she (like your daughter) will bounce back more quickly because she is so strong. She is worried that she will either miss softball this summer or her first few weeks in high school. Not to mention that she is pretty upset that she will not be able to try-out for the high school volleyball team in the Fall...she has already told me that "I'm trying out anyway, you can't stop me"....I bet the doctor will want her in a brace after surgery too!! I guess we have to love their spirit. Let me know how school goes this week. I'll keep a good thought.

Again, thank you for all your encouragement, it really helps me.

[nikyergen]

kmom,
Volleyball will be out next fall if she has surgery from here on out, as it is for Crystal. That's hard enough when you are starting high school. It's even harder when you are dealing with a Junior in High School. Let her do all of her normal sports stuff as it will keep her in such good shape. Try to remind her that she is in the start of high school and at least she isn't looking at loosing her Junior or Senior year of sports. Those are the years that count the most when it comes to college recruiters. You can also do a certain amount of scheduling around sports, but remember she will have to sit out on something. Crystal's surgery was totally scheduled so she would be healed up enough to play basketball next November. She would rather give up volleyball, in order to play basketball. She is guaranteed a varisity spot next year. So, that is where her priority went. Crystal still has two foot surgeries to schedule around her sports over the next two years. So, we will be sitting down with the calendar next fall again to make all those decisions again.

Keep her encouraged. It is only one year of her high school life, and it was early enough that she will be able to come back better and stronger than ever.

Love and prayers.

'til later,
Nikki

[matt]

Shreveport Shriners

Hey. I had surgery at the Shreveport Shriners. I can't explain the wonderful things that those hospitals do. They are just done right wonderful. If you have anymore questions about the Shriners Hospitals you can email me at
hard_roc_child08@hotmail.com
Take Care, Ross

[susannajon]

Hi kmom,

Dr. Lubicky, the chief of staff there, is one of the very best for scoliosis surgery. Your baby is in wonderful hands, and your family will not be destitute from outrageous medical bills. Count yourself lucky that you have found this wonderful hospital.

My daughter did have lots of pain before surgery, mostly aching and muscle spasms that came and went. The waiting is terrible, but soon enough you will be on the other side of surgery. My thoughts and prayers are with you.

[KRIS ATKINSON]

Nikki, thanks for your info regarding Shriners. My daughter is getting a little more flexible about considering it. She asked if she could go to Erie, PA where he grandma lives, if she needs to use Shriners. That is not a good idea, but at least she is showing signs of considering a different doctor from the one she has now. Keep telling me stuff about Shriners as much as you like! I will research heavily before our appointment April 15. Thanks, Kris

[susannajon]

The shriners in Philly has a couple of the finest scoli surgeons in the country, so if she really wants to go to PA, you will be in great hands. Dr. Betz and Dr. D'Andrea are the ones to see.

Susanna

[KRIS ATKINSON]

Grandma lives in Erie, PA, which also has a Shriners. We stopped there for brochures over spring break, and Erica made me promise I wouldn't talk to them about her situation, so I just inquired about a possible tour, which they couldn't do Easter weekend, and said nothing about Erica. Erica got frightened that I would still even consider looking around about her surgery. But, the comment she made yesterday was promising. I can't find any info on the surgeons who work at Greenville on the Shriners site. The site for our ortho clinic gives bios on all the physicians. I guess I'll have to dig further and maybe call the hospital. I researched Dr. Wattenbarger before deciding to go to the clinic he works at, so I was prepared to pick his brain some on Erica's initial visit a year ago when she opted for the brace. I think he was impressed that someone actually looked at the web site. Thanks for the thought on Philly. I understand the surgeons are great in Erie, too. Kris