1st Orthopedic Appt

[Guest guest]

Hi Everyone,

My son will have his first appointment with an orthopedic doc since

being diagnosed in Dec 06. Quick background, he just turned 18, and

has a lot of trouble with his right foot. Hammertoes, extremely high

arch - cannot physically put his foot flat and walks on the outside of his foot.

His ankle looks like it bulges outwards. Lately he has

been having more and more trouble, really twisted his ankle last week

and just did so again today

The orthopedic Doc we are seeing on Wednesday was referred to us by

our neurologist who stated that this orthopedic doc deals with CMT

patients and they worked together on a study with CMT patients. I

know it has been suggested to get at least 3 opinions but I had a

terrible time finding a doc that treated CMT patients and took our

insurance. I was able to get " gap care " approved for this doc. With

that in mind, I'm looking for suggestions/advice on what we should ask the doc

and a way for us to know that he does in fact seem to

understand CMT.

Should my son be having an MRI done first to see what is going on?

Also, from reading the posts, there are bracings that seem to be

helpful and I'm assuming that they are a customized thing and there

would be a waiting period for them and if so what can be done to help

him while we wait?

Any thoughts/suggestions/advice greatly appreciated.

Thanks!

Carmella

[Guest guest]

Carmella,

Yes, sometimes braces can be worn and surgery is not an 'immediate

concern'. Or even in-shoe orthotics. Ask the doc about this. Ask the

doc who he recommends for an orthotist. Ask about physical therapy

too. Ask the doc about his qualifications. Get specific. Like 'how

many persons with CMT are your current patients', or if this ortho

is a surgeon, ask 'what precisely is your experience with surgery on

CMT feet'. Pin him/or her down, nicely. Ask about medical school,

residency, fellowships, what is his/her 'area of expertise'. Is the

doc an AMA member? You have every right to ask anything about the

docs background. Ask for a curriculum vitae, even. Ask if you can

contact other CMT persons he/she has operated on. Ask how many young

people with CMT the doc currently has. See how the doc relates to

your son - does the doc talk TO HIM, or TO YOU.

As for an MRI - let the doc call the shots on the tests. Since X

rays usually come first to show the bone formations. Once the X rays

and MRI are done, ask the doc to explain them to you AND to your

son, so that you both completely understand.

Orthopedists are trained to 'cut'. Just don't allow yourself to be

pushed into any surgery, without having a complete explanation, ask

for diagrams of what will be done, etc.

Get to know this doc. A good patient relationship is extremely

important. I still stand by getting several opinions; I did that

and oh boy, am I glad I did.

Also you can check out this doctor's background if you need to.

Sometimes docs will refer patients to their friend-docs. Find out

what the relationship is between the neurologist and the

orthopedist. Your primary concern is your son's feet - not the doc

making money or helping colleagues.

Also remember, this is only the 1st ortho appointment. And take notes during it

too.

~ Gretchen