Olliers Desease

sassy
0 Recommendations

My daughter was just diagnosed with Ollier's. She also has Madelungs Wrist Deformity. She's in a lot of pain, and has had two surgeries already.

I feel confident that our doctor here is a great doctor and probably the best for this area, but this isn't the only area in the world and I really would like to have a second opinion on treatment options for each of these issues.

Can anyone suggest a hospital, doctor, or whatever that may be well versed on these things? Thanks.

3 replies

Wyld

Hi, I'm pretty new to this myself, my son has just been diagnosed too (although the doctor used another name for it it's the same condition). He has his first surgery scheduled in the next 2 months. I'm sorry I can't be of any help with suggestions, things are still a bit of a blur.

Take care

sassy

I am so sorry I didn't respond sooner. I had given up hope that anyone was going to respond and didn't realize you had until today.

I do understand the blur you're talking about. It all seems so overwhelming in the beginning doesn't it? I'm eager to hear how you and your son are doing now that you've had some time to let it sorta sink in a bit. I'd love to hear details if you want to share, but totally respect your privacy if you aren't comfortable with that, too.

I'm curious though, what name did they give it?

Hugs to you and your son. My prayers are with you all and I hope you'll post results as things go along. Know you aren't alone. Feel free to email me anytime. sassy_wvgirl@yahoo.com

NicoleZ

Hi Sassy,

my son Ryan is 11 years old and has been diagnosed with Ollier's syndrome a few years ago. He is being followed by Dr Gregory White in Phoenix, AZ 602 2410276. He is adjoinct to the Phoenix Children's hospital. My son has also a deformiy of his wrist and I just learned the term Madelung'deformity that seems to characterise his wrist. He should have surgery this sping to help correct the deformation of his wrist as well as his ankle. Hope this will help.

Nicole (AZ)

Add to the discussion

New user? Join here.
Forgot password?
Keep me signed in on this computer until I sign out

Search

Find information and discussion about health topics in 348,705 posts by members like yourself. Learn more...

Join

Join safe, secure groups sponsored by trusted organizations that care about your health. Learn more...

Connect

Connect with 87,781 members and make friends who share your interests, learn about conditions and treatments, find support and more. Learn more...

You