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View Full Version : Scared! Dr. referring 12 yrs old son with 64 degree curve for evaluation for surgery.



allof1t00
07-25-2004, 03:31 PM
My 12 yr old step son has Neurofibromatosis. His mother has been monitoring his scoliosis but not well. She had tried a brace but only for a few days and then did not have him wear it after he complained it was uncomfortable. She told us a year ago that he may need surgery but not much more than that.
My husband and I now have custody and in the last 6 months the curvature went from 42 degree's to 64 degree's.
We took him in to see the Otho a few days ago and he took one look at the Xrays and told us he will need surgery that he cannot help up any furthar and gave us a referral to MaryBridge Childrens Hosp. We now have to wait for MaryBridge to write us a letter and tell us when he can be seen.

We have very little information and we are terrified. I have never used one of these forums and am not really sure how they work but at this point I don't know what else to do.

I guess im just looking for some sort of support web where i can learn more about what is in store for my little boy.

I kinda knew we my husband and I would be the ones to handle things when they got bad but I never thought it would happen so soon.

Can anyone be of assistance or support.. can anyone advise us of resources in washington state or anywhere for that matter.

What is in store for us and how can we help our son through this.

Joe's Mom
07-25-2004, 04:45 PM
I have a 15 year old son with kyphoscoliosis. I know in researching it I run into a lot of mention of Neurofibromatosis. Doesn't apply to my son, but you may want to search kyphoscoliosis and neurofibromatosis and see what you come up with.

Good luck to you!

gabrielle
07-25-2004, 06:29 PM
I'm new here, too, but for the past couple months I've begun reading forums- found that I like this one the best. I get a feeling of real empathy from the folks here. My advice re: getting info is to start with the internet. If Google could wear out, I'd have wiped it out already! From there I would try your local library, or perhaps even a bookstore. Second, it's hard to say "don't be afraid", but take one step at a time. Don't let the situation overwhelm you. There are people who care and who will try to help- no matter where you are. Check local listings for support groups; talk to your family, friends- maybe you belong to a church. You also have this forum. I've seen pics on the 'net of a young boy with what your step-son has. They were very successful with surgery. I was amazed, and it made me feel a whole lot less sorry for myself! It sounds you are a very caring stepmom- I applaud your attention to his condition.

-Gabrielle

allof1t00
07-25-2004, 08:28 PM
I wasnt expecting a response to quickly, WOW.
Thank you both.
I do intend to try to exhaust Google as well as anything else I can
get my hands on.
I'm trying to do my best to stay educated so I can hopefully answer any questions my son may have along the way.
I promised him I wouldn't hide anything from him, that its his body and he has the right to know what is happening at every step.

The only question I haven't been able to answer so far is the one he asked after the Dr. left the room on friday.

"Mom, what if they mess up and make a mistake?"

I couldn't answer. I didnt know what to say. All I could d o was give him a hug and tell him I would do my best to find out.

He is a very trusting child and all he said was "Ok, mom."

I know we have some trials ahead of us from what I have read in some of the other posts, I'm just hoping our results come out as well as they have for others.
We do have a large family that will be a great support group but at this point we aren't letting out all the news till we know more.

I'm glad I found this forum, its comforting to know were not the only ones to go through this.

Thanks again.
Shawna

Carmell
07-26-2004, 02:24 PM
Hi Shawna,

First, take a deep breath and try to take this all one step at a time. Scoliosis surgery is rarely ever an emergent situation. Take the time to discuss options and opinions. Kids who have medical complications (like NF) need to be under the care of someone who understands this - someone with experience in treating these kids. If you have a hard time with insurance, Shriners hospitals are great (usually) for treating kids with orthopedic issues. Please try to get at least one other opinion before agreeing to surgery. Find out as many details about the surgical recommendations too. Ask questions and keep asking... that will your best bet. I look forward to reading your update.