Re: DOCTOR SAYS INTERNET HULLABALOO and some don't

[Guest guest]

I have thought about this topic for a while, since it

was posted several weeks ago.

First, some background.

My problems with Chiari started following a head

injury when I was 9 years old, with " sick headaches "

and dizziness. Medical doctors told my parents that a

child does not have headaches. End of story. Geez.

So, with 100% good intentions, my folks took me to a

chiropractor, whose x-rays revealed that my head was

jammed down into my nck but whose method of

adjustments were painful and I hated going. Sometimes

the headaches would go away afterward, sometimes they

just got worse.

As I look back, they all meant well but this type of

chiropractic adjustment may have caused my Chiari to

worsen. But that is a whole 'nother story.

I was in my late 40's when I was properly diagnosed so

I had over 30 years of seeing doctors and trying to

get some relief as I got worse and worse.

In those 30+ years of worsening symptoms and pain.

Over the years, I found a lot of doctors who were open

minded and curious, and more than a few who were

closed minded and stuck with only the knowledge they

gained in medical school. I think these are

personality traits that won't change and no amount of

my trying to educate them would change them, then or

now.

I learned along the way that when I met a doctor who

was like this or did not speak to me like the

well-informed patient that I am, that I never go back

to them. I was told some pretty hurtful and awful

things about why I was in pain. I stopped seeing them

as the only resource (or like gods like they are

sometimes called) and in my mind said " Thanks for

sharing " and moved on. I even went to a psychologist

and said " I hurt all the time I must be crazy " and his

answer to me was, " no, I think something is wrong, you

are physically sick, and mentally exhausted from

holding on. "

But, even the hotshot docs at that time, did not know

Chiari. One sent me to get an MRI, when MRI's were new

and cutting edge technology. The report noted

" cerebellar tonsils lower than normal " with a

measurement, but the docs just blew it off, saying it

was nothing.

It was time consuming and costly, I saw a lot of

doctors, but along the way I found some who are open

minded and appreciate that I am well informed and do

my own research. One even suggested that I access the

internet about my conditions becuase he believes that

the info on the net has become reliable and

informative, at least from reputable sources.

These kind of open-minded doctors are not easy to find

but they are out there. My ob-gyn, neurologist, PCP,

allergist and dentist are not just Chiari savvy but

are curious, they learn and are open to my research.

They have even tried a few things to help me that I

found on the net that appeared odd, but have worked.

Plus, they have learned alot about Chiari and the new

findings from TCI because of me. But, its also becuase

of who they are as people, not just who they are as a

doctor.

It was kind of like dating, I had to kiss a lot of

frogs (see a lot of doctors) to find the prince and

princess (the right doctor for me).

Anyway, just my two cents ... hang in there t bfind

the right doctor for you.

Hanna

decompressed 2002

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