fed up (doctors)

[Guest guest]

Hi Everyone

How is everyone doing today? I am frustrated to no end. I know you all

will understand where I come from so I hope you don't mind me airing a few

things.

When you look up research regarding chiari malformation or arnold chiari

malformation you will read different oppinions. This is my beef. I feel

that most doctors in Canada are not keeping up with the lastest information

regarding this Chiari business.

I had first taken ill when I was 28 on Dec 28 89 and it wasn't until 97 that

I was finally diagnosed with chiari 5 to 7mm herniation without sm.

I was excited yet upset because I was finally given a name and that all this

pain wasn't in my head. I had to quite working because I just could not do.

I could hardly walk because my leg was so heavy and very painful. That was

my biggest beef. I had several MRI's done from 89 to 97.

Symptoms from than to now have gotten worse. I have headaches most of the

time. I wake up in the middle of the night if I move and my head starts to

pound. My hand tremors if I over use it which isn't much because the

fatigue is bad. My vision is blurry when I have a headache. I know that

you all know what I am feeling.

Last week I spoke to a doctor in Columbia who was very nice. I felt like I

was on top of the mountain just by talking to someone by voice that knew

what chiari was all about. They are willing to help me yet money is an

issue. I am sitting here waiting to hear back from the doctor as to when

they can get me in for another MRI as they put me on a waiting list. They

are scheduling the test as early as one year from now.

I just don't think I can wait that long. I feel that after the MRI and than

go back to the doctor that he isn't going to do anything anyways because the

doctors here have this believe that size of herniation matters and that mine

is only mild. they feel headaches at that size of herniation or my other

symptoms are from something else. Not sure what.

If you were me what would you do? I need advice. I am tired of all this.

I told my husband the other day that I just feel like giving up.

I am sorry this is so long. I hate today.

Hugs all

Canada