Re: re: uniformed medical professionals

[Guest guest]

> Okay, Mr. Know It All... so how do we get Chiari introduced to the

> cirriculum of new student and Doctors ?

> Word of mouth...maybe????

> Anne

That'd be a good start. I'm not in a position to be critical: I want to

make this work, however it has to be done.

I really need feedback. I think that the best way to make a difference for

future chiari patients is to help them get diagnosed within a short period

of time, through their family doctors. However we can reach those first

responders and family physicians is the key to getting a quick diagnosis,

provided that those first responders and family physicians have some

understanding of chiari malformations.

The internet has clearly helped. The staff at WACMA gets inquiries about

chiari malformations quite often.. and some of them are from dedicated

family physicians who have taken the time to see what the he** (ck) a

" chiari malformation " might mean to their patient. This is wonderful, but it

only represents a tiny fraction of physicians OR patients who may need to

have better or more complete information.

Chip

5+ years post-op and doing great !

http://www.pressenter.com/~chip/chiari.htm

[Guest guest]

Chip wrote:

> Okay, Mr. Know It All... so how do we get Chiari introduced to the

> cirriculum of new student and Doctors ?

>

> I don't know. I've been working on this a long time. I'll gladly listen to

> ideas !

>

I put together a folder of information. It is a little out dated, and I need to

put new information in it as it comes out. I keep three or four on hand at all

times. When I go to a doctor, I hand it to them, and tell them they can keep it.

I forgot to take it to my Urologist at my last appointment, but plan on having

it in hand when I go back.

My PT, the kids pediatrician, my optometrist, and a few others have been handed

my packet. They have read it and been very interested.

When you go for testing, (x-ray, MRI, blood work....) take a folder with you. I

will try over the next couple of weeks to put together a new one, and I'll share

what I put in it :-)

Kathleen

[Guest guest]

>

> > Right now, many Family Physicians think it's cost-effective to do

> all sorts

> > of testing and referrals before ordering an MRI. In reality, studies

> show

> > that $1400 - $3300 worth of tests are done ... before ordering a

> (national

> > average) $1200 MRI. It doesn't take a math whiz to see that an MRI

> would be

> > LESS expensive in just about every case.

>

> Yep, you hit the nail right on the nose there, Chip.

Pondering this morning! The house is still cold, and the only warm room is

where the computer is :-) We just returned from a weeks vacation to

Michigan.

Finding a good primary doctor is a must! I have gone through a few over the

past ten years. I found a great pcp for myself and husband, and we have a

wonderful pediatrician for the kids.

Both doctors are willing to learn. When I mentioned chiari to our

pediatrician, and the fact that had headaches, and Nick was in an

accident, he ordered MRI's immediately.

When I told him was progressing, he wanted to send him to Maine's only

pediatric neurosurgeon. When I told him I go to NY, and am familiar with

those doctors, he referred him right away.

I gave both doctors information about chiari..... as soon as they had a

question. I can really understand the general medical community not

understanding chiari. I can't imagine learning every ailment out there, and

remembering them! I can't remember where I put my list so I don't forget

things while I am out.

Being knowledgeable yourself goes a long way. Learn everything you can. That

way when questions are asked, you are comfortable with your answers. Learn a

certain amount of medical lingo, but also put it in lay terms.

Like I said, I will be putting together a new informational packet for the

first of the year, and will share what I put in it. Put them in three ring

binders and carry them with you. I've even given them to friends that want to

know more.

Kathleen