need help

[jen3boys]

hi, I found out that I have chiari 1 malformation on last Friday I met with the doctor this Friday he said I need to find a neuro surgen. I have been trying to find where the best place to go is I live in vermont. If any one has any advice I would very greatfull. I so could use some help

[selmaS]

Dx'd = diagnosed.....sorry we do use abbrev here...I misspell aloat...we do have health pages...u can click on at the top right or scroll down and there is a page with common abbrev.


"selma"

[Shane99]

Yes, and make a list of any questions you think of or run across and put them in a notebook. If you rely on memory, you might forget to ask something important. And write down the answers and get the doctors to spell out any "fancy" words.

Much easier to do the research on your own at home if you have the correct spelling. Like, syrinx is pronounced "sear - rinks" I had no idea how to spell it until I asked.

[jen3boys]

thank you but what does this mean   dx'd ur chiari ?

[selmaS]

Hi the Chiari Insitute has a web site....just goggle the name...Dr Paolo Bolognese is there....and IN CO it is Dr John Oro.....Both r very good drs and well known in the chiari field. I met both and liked them both.

Your best bet is to print off info from the web and takae it to ur PC this way he can learn about it......I am teaching my PC and he is very open to learning more.

If u need help finding info to takae let us know.

There r even sites that help with travel .

U r off to a good start, being informed is the best thing. As Shane mentioned, make sure they r checking ur CSF flow...and always ask for copies of all tests...ur MRI's on disk...and the reports.This way when u go to the specialists u have all the info!
U can ask for the MRI that dx'd ur chiari to see what is involved.


Godspeed
"selma"

[jen3boys]

no, I don't have any more info I will get more this Friday. I just want to be more pre-paired. Four so many years they tried to tell me it was all in my head lol but UVM is about an hour and half away. I would like to move forword alittle so trying to find a knowledgable person is important. I wondered about the place in New York or Co. it is a ways a way but I am considering it any info is helpful and apprecitive.

[selmaS]

Hi and welcome....Shane did a great job with the info.Thanks Shane!!  : )

This forum has some of the warmest people I never met face to face....they r all great!!

I hope u join us often on the boards.

Godspeed
"selma"

[Shane99]

Welcome to the boards. Sorry you have to be here, but you've come to a good place. We try to be a friendly, supportive community here.

The most important thing you can do right now is find a Chiari Specialist. Not all Neurosurgeons are very familiar with Chiari. I'm not aware of anyone specific in Vermont, but you may want to check with the University of Vermont's Neurology Department. I understand they're aware of and have performed such surgeries before.

Are you far from Maine? The Univeristy of Maine also has . . well, I'm not sure of specialties, but they are aware of Chiari and do research and surgeries there.

A bit of travel for you, but The Chiari Institute is in Long Neck, New York. They're generally consider the best place to go - although, Dr. John Oro in Colorado is also tops in his field. And I'm very pleased with my surgeon Dr. Carl Hamph in Nashville Tennessee. Just mentioning a few options if you might have family nearby any of the above that you could stay with for recovery or something.

Also, you'll need to have a PCP that is willing to read up and become very familiar with Chiari. Most "family doctors' aren't aware of Chiari, but they'll need to be, because there isn't a cure for this. The surgery helps with the symptoms, but you will always be considered a "Chiarian". Even after surgery you will need periodic MRI's to make sure it's behaving.

Have they mentioned the size of the herniation (or tonsils)? Maybe in the 1mm - 20mm range, or even larger?

Have they mentioned Syrinx, Syringomyelia, or CSF blockage? It often follows Chiari and can cause the more critical symptoms.