Thank you

March 15, 2012

Hi everyone!! My name is Beckwith, I am 26 years old and a mother of a

beautiful 3 year old little girl named na also have a 7 year old step son

Jayden from my wonderful fiance Leonard. My family and I live in Myrtle Beach,

SC. I was diagnosed with chiari in 2007, and had my first surgery in 2008 which

was horrible and ended up in the icu for 2 months because of complications that

could have easily been prevented. It was christmas eve and my doctor didn't feel

safe letting me go home yet, so I asked if I could at least see my daughter

because it was her first christmas and I didn't want to miss it. They could not

allow my baby into the ICU, so they ended up transfering me to a regular

hospital room just for the night so that I could spend christmas with my family,

which I thought was great at the time. Little did I know it would be the worst

night ever. My nurse read on my chart to apply a preasure treatment, which is a

type of bandage, but instead of her changing my bandage she took 2 of her

nuckles and pushed on the area that I had just had brain surgery on with very

hard pressure. I screamed in pain and shortly after that felt my shirt getting

very wet. We came to realize that I had fluid pouring out the back of my head

through the site of the incision, she had busted the sack that holds my spinal

fluid, which was draining out of my head, down my spine, and into my brain. I

ended up having to have an emergency surgery to repair the damage that the nurse

had done, not knowing what she was doing. I then had to stay in icu for another

month and a half. After I was finally released from the hospital I felt pretty

good for almost a year, and it felt amazing to not be suffering the horrible

pain I had been so used to having on a daily basis. Unfortunately that didn't

last long. My pain was slowly comming back and getting worse with time. I had

went back to see my neurosurgon to see what was going on, and was told it was

normal to

have a little pain for about a year or 2 after the surgery so I just kept

dealing with it just waiting for it to get better. Sadly though my pain has

never went away and is now just as bad as it was before I had the surgery, as

well as blurred vision, dizzieness, I lose my balance a lot, am very forgetfull,

my hands, arms, and feet and legs go numb a lot, also the back of my head goes

numb a lot as well, I have a very stiff neck and cant move it to the left barely

at all, and the headaches are at least every other day, if not everyday, and I

am always very tired. I live my life in pain. I have been to many different

doctors, and keep getting told the same thing.... that all of this is normal for

a person with chiari and send me on my way saying that they do not treat people

with chiari due to the complexity of the condition. I am so tired of living in

pain, and am so sad that I can't function the way I want to with my children or

even myself. I have now lost my job due to calling in to much because I was in

so much pain I couldn " t even move out of the bed. On top of all this stress I am

the most upset that I still have not been able to find a doctor that will accept

me as a patient because they don't know enough about the condition and refuse to

take me as a patient. Because I can't find a doctor I end up having to go to the

er when I am in extreme pain to get any kind of help, but saddly because I have

been to the er so many times, the last time I went there the doctor told me that

he believed that I was just addicted to pain meds and he could no longer treat

my pain with strong meds, which as all people with chiari know, it takes a

strong med to even touch the horrible pain of a chiari headache. So at this

point I am reaching out to this wonderful support group so that I can finally be

understood by someone, and not made to feel like I'm crazy, which is what people

think I am that don't know about or understand chiari. I am just so sick of

people telling me that I am crazy and that there is no way that I can still have

pain because I had the surgery and am cured now. What they don't seem to

understand is that there is no cure and the surgery is just a way to help, not

cure and totally fix the problem. I am so glad to have found this group of

people, and look forward to talking with all of you. I am working on a

fundraiser right now to earn money to donate to some kind of chiari foundation,

so that hopefully one day all of us chiari sufferers can finally live life

without the pain, stress, and depression that so many of us do. Again thank you

for being here for me and actually understanding what I am going through.

Beckwith

March 15, 2012

,

It doesn't sound like you have seen a chiari expert? If not I would

suggest you check the Doctor's list and get an appointment with one close to

your area. I can't think any of them would refuse you as a patient. Bonnie

In a message dated 3/15/2012 10:33:03 A.M. Central Daylight Time,

yvonnebeckwith@... writes:

Hi everyone!! My name is Beckwith, I am 26 years old and a mother of

a beautiful 3 year old little girl named na also have a 7 year old

step son Jayden from my wonderful fiance Leonard. My family and I live in

Myrtle Beach, SC. I was diagnosed with chiari in 2007, and had my first

surgery in 2008 which was horrible and ended up in the icu for 2 months because

of complications that could have easily been prevented. It was christmas eve

and my doctor didn't feel safe letting me go home yet, so I asked if I

could at least see my daughter because it was her first christmas and I didn't

want to miss it. They could not allow my baby into the ICU, so they ended

up transfering me to a regular hospital room just for the night so that I

could spend christmas with my family, which I thought was great at the time.

Little did I know it would be the worst night ever. My nurse read on my

chart to apply a preasure treatment, which is a type of bandage, but instead

of her changing my bandage she took 2 of her nuckles and pushed on the area

that I had just had brain surgery on with very hard pressure. I screamed

in pain and shortly after that felt my shirt getting very wet. We came to

realize that I had fluid pouring out the back of my head through the site of

the incision, she had busted the sack that holds my spinal fluid, which was

draining out of my head, down my spine, and into my brain. I ended up

having to have an emergency surgery to repair the damage that the nurse had

done, not knowing what she was doing. I then had to stay in icu for another

month and a half. After I was finally released from the hospital I felt

pretty good for almost a year, and it felt amazing to not be suffering the

horrible pain I had been so used to having on a daily basis. Unfortunately that

didn't last long. My pain was slowly comming back and getting worse with

time. I had went back to see my neurosurgon to see what was going on, and was

told it was normal to

have a little pain for about a year or 2 after the surgery so I just kept

dealing with it just waiting for it to get better. Sadly though my pain has

never went away and is now just as bad as it was before I had the surgery,

as well as blurred vision, dizzieness, I lose my balance a lot, am very

forgetfull, my hands, arms, and feet and legs go numb a lot, also the back of

my head goes numb a lot as well, I have a very stiff neck and cant move it

to the left barely at all, and the headaches are at least every other day,

if not everyday, and I am always very tired. I live my life in pain. I

have been to many different doctors, and keep getting told the same thing....

that all of this is normal for a person with chiari and send me on my way

saying that they do not treat people with chiari due to the complexity of

the condition. I am so tired of living in pain, and am so sad that I can't

function the way I want to with my children or even myself. I have now lost

my job due to cal ling in to much because I was in so much pain I couldn " t

even move out of the bed. On top of all this stress I am the most upset that

I still have not been able to find a doctor that will accept me as a

patient because they don't know enough about the condition and refuse to take

me

as a patient. Because I can't find a doctor I end up having to go to the

er when I am in extreme pain to get any kind of help, but saddly because I

have been to the er so many times, the last time I went there the doctor

told me that he believed that I was just addicted to pain meds and he could no

longer treat my pain with strong meds, which as all people with chiari

know, it takes a strong med to even touch the horrible pain of a chiari

headache. So at this point I am reaching out to this wonderful support group so

that I can finally be understood by someone, and not made to feel like I'm

crazy, which is what people think I am that don't know about or understand

chiari. I am just so sick o f people telling me that I am crazy and that

there is no way that I can still have pain because I had the surgery and am

cured now. What they don't seem to understand is that there is no cure and

the surgery is just a way to help, not cure and totally fix the problem. I am

so glad to have found this group of people, and look forward to talking

with all of you. I am working on a fundraiser right now to earn money to

donate to some kind of chiari foundation, so that hopefully one day all of us

chiari sufferers can finally live life without the pain, stress, and

depression that so many of us do. Again thank you for being here for me and

actually understanding what I am going through.

Beckwith

March 16, 2012

,

Even after my decompression in 2001, I still would get migraines. I had been on

propanolol for prevention before, and have had to continue to use them ever

since. Perhaps you could get a doctor to help you find a preventative for your

headaches.

Lillian SantanaSan , Texas

Life is not about waiting for the storms to pass...it's about learning how to

Dance in the Rain.

To:

From: kiltsman@...

Date: Thu, 15 Mar 2012 15:32:55 -0400

Subject: Re: Thank you