Announcement

**Cakedec** · 01-17-2006, 09:11 AM

Your daughter's curves are on the borderline for surgery. Definitely get a couple more opinions since some doctors may want to try a brace first, especially since she is young and may be growing yet.

Deb

**mariaf** · 01-17-2006, 09:23 AM

Re: I'm New

I agree, please get a second or even a third opinion - particularly since you did not feel comfortable with the surgeon you met with. Depending on which state you live in, check this site for recommendations. There are some very good doctors out there. You and your daughter deserve one you are totally confident in.

Good luck - and keep us posted.

Maria

**flowerpower** · 01-17-2006, 12:31 PM

Just remember you do have some time to research the condition, the surgery and the doctors! The one good thing about scoliosis is it is rarely an emergency situation. to answer some of your questions:

How do we know if we get a good surgeon? Like Maria said, this forum can be a good place to start for recommendations. You should start by finding a doctor/surgeon who specializes in pediatric orthopaedics.A good doctor will give you time to answer any and all questions and make sure you and your child understand everything going on. Ask to speak to several patients that have had the same procedure (bracing/surgery) as is being proposed for your child. Check into the background of the doctor (schooling, additional training & fellowships). Look for a doctor who does 120+ surgeries a year.

How do you know if you're making the right decision? There is no permanent cure for scoliosis although bracing may correct and hold curves to a certain degree. In the case(s) of scoliosis that are more aggressive and progress no matter what, surgery is the only option. Otherwise the body may continually become more out of alignment - this may cause increasing discomfort and pain and may eventually compromise internal organs.

What if we don't....? Reread last paragraph.

Good luck to you, please keep us posted on your "journey".

Sincerely,

Renee

**Bill's mom** · 01-17-2006, 01:25 PM

yomomma2,

It's the pits, isn't it?

I can fully relate to the guilt in not finding it. (I cried as much about the guilt as about the scoliosis.)

And, we certainly prayed for a miracle. We got one too - it just took surgery to accomplish it!

It's understandable that you're a wreck. This is a major major thing. Do not feel alone. We all understand.

When my son was diagnosed, he was so far along that surgery was our only option. (He had an S curve and the larger curve was in the 50s.) What we didn't know was that his organs were already being affected. Since he had asthma, he needed a consult with a pulmonologist. She required a chest x-ray. On the x-ray it was obvious that one lung was being compressed. I think family sometimes thinks it's that we want them to have a prettier spine. My son's condition proved that there can be so much else going on.

There will always be someone who will second guess your decision. Unfortunately for you, your husband is one of them. So, do get a 2nd opinion, and a 3rd, etc.

And know that if it comes to surgery, even though surgery is scary for us, for the medical world, it's not that big a deal. Our doctor even told us that.

And lastly, know that most kids (and their parents) who have had the surgery do not regret the decision. I know my son is very happy to have had the surgery. And though I wish it hadn't come to surgery, I am happy that he had it also and I strongly encourage anyone who needs it to have it. (My 13 year old daughter was just diagnosed a couple of weeks ago, so I may need to come back and reread my post if she needs surgery!)

Just keep coming to this board and reading and questioning. Everyone understands.

Susan

**Mary Lou** · 01-17-2006, 01:29 PM

Please don't blame yourself. I know it's hard, we've all done it, but it won't do you any good. Once you can get past feeling guilty, you will be able to concentrate on the task at hand. Like the others have said, you should get at least one other opinion. You will know when you've found a surgeon that is right for you and your daughter. We ended up getting a total of five opinions and it was the 5th doctor who did my daughter's surgery.

I'm sorry to hear about your husband's denial. Trust me, I've been there with my husband and his family. Try to talk to your husband, let him go to doctor appointments, let him look at this forum, whatever needs to be done. If you think it will help, tell him to e-mail me at Spinesupport05@aol.com and I'll gladly talk to him. Feel free to tell your daughter she can e-mail my daughter, Jamie at the above address as well.

Mary Lou

**nikyergen** · 01-17-2006, 03:00 PM

Cry, did it lots and all the time. Denial, I think we have all dealt with it, ourselves, our spouses, our family, and our children. Craig & I have three daughters all with scoliosis and/or kyphosis at varying degrees. Panic, yes. Scared, yes. To be told in one day that one needs surgery, one needs a brace and one is a wait & watch. What a deal. Handle it, yes. Guilt, all the time. I think about our oldest who had surgery. I've noticed her back wasn't right since she was little girl. I thought it was because she was trying to compensate for having severe asthma. Boy, was I wrong. Did I feel guilty, you bet I did. WHen I asked her pediatrician, he wasn't to concerned about it. SO, you try to trust your doctor. I grill doctors now, because I feel if I would of really pushed bracing might of been our first option instead of straight to surgery.

Get all the opinions you need to be comfortable with your child's treatment. Your child deserves the very best treatment possible.

Acceptance, finally now that everyone has been put through the ringer and doing much better. I realize that it wasn't my fault. As there were many times when a doctor would ask after looking a chest xrays for pneumonia on our oldest, if she had ever had a back injury. But, they would never suggest anything else.

Happy, for sure. Everyone is doing well. The wait & watch is released now. The surgery patient is almost one year post-op and doing incredible. The brace patient gets out of her brace soon. The most amazing thing, Life Goes On during and after all of this.

Would I do it again? Maybe not so indepth, but yes. To see my kids in better spirits because their backs don't hurt all the time, it was worth every sleepless hour I spent.

'til later,
Nikki

**yomomma2** · 01-18-2006, 06:32 AM

I want to thank each and every one of you for your replies. Being on this site makes me feel better , makes me cry alot but it does make me feel better to know we aren't the only ones going through this.

We live in Arkansas. Our daughter saw Dr. Blasier on monday at children's hospital. The thing with this doctor - he didn't volunteer any information. When my husband asked , how many surgeries he had done. He flippantly replied, " Oh, hundreds , next question"
When our daughter said, I'm not sure I want to have surgery. He replied, "Well you don't HAVE to have surgery, unless you want to have a straight back and be normal. Next question"
When I asked about bracing, He said, "nope, too far gone for that, we don't brace over 40. Next question. "
When we asked about complications of surgery he said, "well there's bleeding, infection as with any surgery, sometimes a vertabre may pinch the spinal cord causing a problem. That rarely happens. Next question"
We aren't idiots, (all 3 of us knew what he was talking about). But we felt as if he thought we were.
He acted as if he was extremely bored and just wanted to get out of the room.

I believe there are only two doctors here in Arkansas who specialize in adolescent scoliosis. One being Dr. Blasier and the other Dr. McCarthy.

My husband has friends who have children who are being or have been treated by Dr. McCarthy. He want's to try to get Emily an appointment with him.

oh, Emily is at risser 1, so yes she has some growing to do.

**mariaf** · 01-18-2006, 08:33 AM

Re: I'm new

Yomomma2,

Dr. Blasier sounds like a complete jerk. I'm sorry you and your family had to be subject to his horrendous bedside manner, or lack thereof. From what you've posted, if I were you I'd run as far as I could from this guy.

Since you say there is a shortage of pediatric orthopedic surgeons in your area, may I make a suggestion. How far are you from the closest Shriners Hospital? I've heard nothing but good things about their doctors - and I can guaranty they will treat you and your family with the dignity and respect you deserve. We travel nearly 3 hours each way to the Shriners in Philadelphia. Not only does my son's doctor speak to me like I was on her level, but she and I often make desicions about his care together. She treats me like the informed, concerned parent that I am.

In case you were not aware of this, Shriners will help with transportation if necessary to get you back and forth from appointments and there is no charge for their services, not even your insurance company will ever see a bill.

Please let me know if you'd like more information....and best of luck to you and your family.

Keep us posted.

Maria

**nikyergen** · 01-18-2006, 10:00 AM

Shriners will also give you a meal allowance at there cafeteria and help with a motel if you need to stay overnight. Contact you nearest Shrine Club for that kind of help, it doesn't come directly from the hospital itself. The Shrine club has their own account for those things. The hospital can help you find out where you nearest Shrine club is. There are 22 hospital across the country. So there are plenty of them.

Nikki

**yomomma2** · 01-18-2006, 11:07 AM

I believe the closest shriner's hospital would be Sherveport Louisiana.
(my husband's hometown)

I was thinking about applying there but we have great insurance. As a matter of fact our insurance will cover 100% with anything associated with scoliosis.
My husband said he thought because of that they wouldn't see our daughter.

**Alison** · 01-18-2006, 11:12 AM

Shriners will see any child.....it does not matter whether they have no insurance or have really great insurance...that does not matter.

I'd say put your application in for your daughter. You weren't happy with your current ortho (he reminds me of 'production line' medicine....where they are not focused on the patient.......the worst kind :-( and it'd be worth getting a second opinion. And Shriners has very, very good doctors (some of the world's best); and have excellent facilities and are right up their on the latest rsearch and technology.

I have read nothing but praise from many parents (and kids) about the Shriners hospitals. If I was in the US, and had a child with orthopaedic issues (such as Scoliosis)...I'd have no doubt at all at which hospital I'd take them to.......I'd take them to Shriners, without a second thought

Regards

Alison

**nikyergen** · 01-18-2006, 11:19 AM

yomamma2,
Income, insurance, etc., doesn't matter to Shriners. It is not important to them. We have good insurance too, but we still used Shriners. Call the Shreveport Shriners and apply over the phone with them. Even if you only use them for a second opinion, it is at no cost to you or your insurance. You may want to read some of posts that have been given about Shriners. There is so much that people don't know about them. Everyone fears a hidden cost or something like that. That is not true. They are 100% funded by donated monies. The patient or the patients family pays nothing. They are state of the art when it comes for surgeries and treatments. They treat anything orthopedic and they also have three burn centers. We got a bill for some bloodwork that had to be done before and after surgery, it was for $1,500. I about paniced because I wasn't prepared for it. I called them and asked what I was supposed to do. She said nothing, that the hospital that did the blood work has to send the bill, Shriners gets it also and pays it. She was right, I never saw another bill after that one.

Just remember your insurance and income do not make any difference. You can make $10,000 a year or $100,000 a year. Every child is created equally, like Kings and Queens. We had a great experience and wouldn't recommend anywhere else. The are concerned about number one, YOUR CHILD. The doctors are generally very good at answering questions and making you feel comfortable. Our daughter was thrilled with the way her doctor talked to her the day before her surgery. He wanted to be sure she was comfortable with things. She asked him questions and he answered her directly.

It's worth going for an initial appointment and second opinion, even if you don't use them.

Nikki

**yomomma2** · 01-18-2006, 11:58 AM

Thank you mariaf ,alison and nikyergen, I'm going to call them.
They sound like an answer to my prayers..

Phyllis

**mariaf** · 01-18-2006, 03:18 PM

Just to put my two cents in (again), we also are fortunate enough to have very good insurance as well. In addition, we live in New York City where some of the so-called "best doctors" are. And, guess what? We travel to Shriners in Philadelphia because we want the best care for our son - namely great docturs using all the latest technology and who care about nothing but helping kids, the way medicine should be!

Best of luck - we are all here to help you through the journey

Announcement

I'm new

I'm new

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment