How do I find the right surgeon for my son's surgery?

[jille]

Hello,

My 17 year old son has a 48 degree C curve. The doctors say he should have surgery within the year. Now that I have stopped crying (finally), I need to find the best surgeon. We live in Fort Collins, CO and have been to the Children's Hospital in Denver. I haven't heard good things about them and would like to explore other options. Does anyone have a surgeon they highly recommend? Also, should we get an MRI? His curve changed fast so I haven't had time to do a lot of research on the process. Please guide me.

Jill

[hdugger]

I'm so sorry to hear that you son has scoliosis. As a parent of a son with scoliosis, we cried a lot of tears as well.

Our doctor (who is a member of the scoliosis research society) told us that, because scoliosis in boys is rare, they often do an MRI to rule out any other underlying cause. In my son's case, the MRI revealed that he had congenital (and not idiopathic) scoliosis. But, lots of boys have idiopathic scoliosis, just like girls.

Best wishes - it does get better.

[Pooka1]

Hello,

My 17 year old son has a 48 degree C curve. The doctors say he should have surgery within the year. Now that I have stopped crying (finally), I need to find the best surgeon. We live in Fort Collins, CO and have been to the Children's Hospital in Denver. I haven't heard good things about them and would like to explore other options. Does anyone have a surgeon they highly recommend? Also, should we get an MRI? His curve changed fast so I haven't had time to do a lot of research on the process. Please guide me.

Jill

Well I can tell you the reason my one kid had an MRI was because the curve moved fast... 5*/month for the entire observation period before it was fused. So fast progression is definitely an indication for an MRI to my knowledge.

Her identical twin's curve moved fast at times but not that fast and she never got an MRI. I can't say whether or not if part of that reason was because her identical twin's MRI was normal.

Good luck.

[tkare]

I have a son with scoliosis also and we had several opinions none of them asked us to get an MRI done. I think maybe because the kind of curve he had was typical of AIS. One surgeon said he would do it if it would make us feel better but did not think it was necessary in our sons case.

As for finding a doctor, scoliosis research society is a good starting place they can give you information about doctors in your area. You should be able to find them with a google search. It's very helpful to have a second opinion. Good luck with everything. It is a roller coaster but you have found a great place for helpful information.

[jille]

Thank you for your kind support. Knowing it gets better is very comforting I will look at that website. Is the treatment different if the scoliosis is not typical?

[hdugger]

Some treatments work differently with kids with congenital scoliosis - bracing, for example, is felt to be ineffective for these kids, since they have mispshapen or fused vertebrae. Surgery may be a little different, again since the curve tends to be a little stiffer. But, there are effective treatments for all kids, no matter what causes the scoliosis. As proof of this, the forum is full of concerned parents, but I rarely see a teen on here and, when I do, they seem uniformly upbeat. So, it's awful for us, but the kids all seem to do fine.

[jille]

I'm so sorry to hear that you son has scoliosis. As a parent of a son with scoliosis, we cried a lot of tears as well.

Our doctor (who is a member of the scoliosis research society) told us that, because scoliosis in boys is rare, they often do an MRI to rule out any other underlying cause. In my son's case, the MRI revealed that he had congenital (and not idiopathic) scoliosis. But, lots of boys have idiopathic scoliosis, just like girls.

Best wishes - it does get better.

Thank you for your kind support. Is the treatment the same for congenital? How is your son?

[tampamom]

Sorry to hear about your son's Dx. I know who how shocking it can be and worrisome. We had a quick Dx for my son also and are looking at surgery in the next few months. My son is 15 and was just diagnosed in Feb with a T55, L42. So far we've had 5 consults to find the right surgeon. It is hard, since like us, you probably haven't had the years of consults, Xrays and bracing appointments to build a rapport with the doctor. But in a way that is a good thing!

I came to realize from reading the posts and talking to other moms in person, that people get this surgery done all over the world, there are lots of great doctors for Scoilo surgery. Yes it is scary and a big deal, but it is doable. Lots of surgeons can handle it.

Another great resource is the book "Scoliosis Surgery: The Definitive Patient's Reference" by David K. Wolpert. This forum a lot of the same info, just not as organized.

Everyone on this board is so helpful and supportive, you've got support here!

All the best for you and your son!

[hdugger]

Thank you for your kind support. Is the treatment the same for congenital? How is your son?

And thank you

He's great - just about to head off to graduate school and very well-adjusted, happy, etc.

We had an odd path through our diagnosis. He wasn't diagnosed until he was 16 (with a 33 degree curve) and then we were told through several appointments that he was done growing and his curve wouldn't increase, all while his curve *was* increasing. So, he hit adulthood with a 50-something degree curve.

Because he's an adult, the treatment plan is different. Adults don't have surgery unless they're in pain or progressing. So, he hasn't had surgery, but managed to *look* straighter through a combination of massage and exercise. I assume he'll eventually need surgery, but it hasn't happened yet

[mariaf]

Hi Jill,

I'm sorry to hear about your son's diagnosis. Please know that we all can relate to what you are going through. The Shriners Hospital in Salt Lake City has an excellent reputation for treating scoliosis. You might want to check them out for another opinion.

Best of luck to you and your son. Please keep us posted.

[jille]

This is the first day I have not cried while discussing my son's scoliosis. It's because I feel the kindness and support from all of you-- you are giving me strength. I have an appointment in August with Dr. D'astous who is with the Shriner's Hospital in Salt Lake City. I feel like this is a place where money is not the main objective, unlike Children's Hospital in Denver.

I hope I can be the one who helps the scared mom in the future

Thank you all!

[Pooka1]

This is the first day I have not cried while discussing my son's scoliosis. It's because I feel the kindness and support from all of you-- you are giving me strength. I have an appointment in August with Dr. D'astous who is with the Shriner's Hospital in Salt Lake City. I feel like this is a place where money is not the main objective, unlike Children's Hospital in Denver.

I hope I can be the one who helps the scared mom in the future

Thank you all!

Hi there.

I just wanted to tell you that you and your son can do this. The way to do it is to pick great surgeon and have confidence in them. That's all you can do but it is also the best you can do and is a good proven strategy.

I like to tell people that the second time I went through this (both my twins required fusion about 18 months apart), it was easier emotionally because I saw how quick the recovery was the first time and how the first kid was able to move on in life past scoliosis. Of course I was still concerned the second time but I wasn't so worried.

I don't expect those words to ease your concerns and they probably would not have eased mine the first time but I'm still throwing that out there in the hope it can ease you a slight bit.

You and your son can do this and you will be stars. :-)

[mariaf]

Jill,

You WILL be the one helping a scared mom in the future. I know because we all started out right where you are now, as the 'scared mom'.

But right now just focus on your son and remember that scoliosis is a very treatable condition. I have heard FANTASTIC things about Dr. D'astous. I don't believe your son could possibly be in better hands.

[tkare]

It is so scary and overwhelming when you are facing scoliosis surgery for your child. I found this board so helpful because as mariaf stated we all began as scared parents and have done our best to go on and help others going through the same thing. I also found it helpful to try to take it one scary step at a time as the whole picture can seem like too much. In my mind I focused on first getting through surgery, then icu, then the hospital, and so on. That way each step is an accomplishment and one step closer to healing and moving forward. We are only a few weeks out from surgery and still have a long road ahead but each day gets a little easier. Feel free to ask any questions! Best of luck you can get through this!