19 y/o daughter with Chiari

[Guest guest]

Hello,

My name is . I'm 42 years old, married for 23 years with 3 children.

First let me say I'm sorry if you receive this email more then once. I just

joined 3 different groups so if you happen to be on them also you will probably

get this more then once.

My youngest daughter with Diagnosed with Chiari 1 Malformation last

month. At the appointment with the Neurosurgeon he told us that she has Chiari

2

with Syringomyelia

Let me back up for a second and explain how we came to find this out.

December 9th 06 was in a car with a young man that was driving about 70

mps

down a highway. He lost control of the car and rolled 3 times. was

wearing a seat belt when the accident happened. She unlatched the seat belt and

climbed out of the car. Witness' to the accident called 911 and had EMT's

dispatched to the accident scene. They said they thought with the way the car

lost

control and started rolling that the people inside my have been killed. It

was dark and the accident happened out in the middle of no where so they

couldn't see that the kids had gotten safely out of the car. By the time they

turned

around and got back to help the kids they were both out of the car. By the

time the EMT's showed up my daughter was complaining of severe head, neck, and

back pain and was dizzy. The EMT's treated her at the scene and then

transported her by ambulance to the hospital. At the hospital they did an MRI

but

only of her head. They didn't get the bottom portion of her skull at all. Why

when she was complaining of head, neck and back pain and they didn't do a full

MRI I don't know. She was released from the hospital 4 hours later with the

doctor's saying she had a concussion and that she would be fine. Take her home

and keep an eye on her. Well, my husband and I felt so lucky that our

daughter was able to walk out of that accident.

's headaches, neck aches and backaches in the months following the

accident got so much worse. Over the counter pain meds stopped working to

control

the pain. She also started getting shooting pains down her arms and legs. In

the 4 months following the accident she also put on about 30 lbs, no idea why.

We made her an appointment at our family doctor. He decided to send her for

another MRI to see if there was something the hospital missed when she was in

the accident. He called the day after the MRI and informed us that she had

Chiari 1 Malformation and that she would need surgery.

We made her an appointment at Barrow Neurological Institute with Dr.

Spetzler. Anyone have an opinion about this hospital and/or Doctor? We made

the appointment with him because he came very highly recommended not only from

our family doctor but some nurses that we personally know. However as far as

we know non of them have had him perform surgery on them.

Doctor Spetzler is the director of Barrow's. We first saw another

Neurosurgeon and after he was done evaluating and went and got Dr Spetzler

and he

came in and evaluated her. They told us that 's already lost some of her

motor skills and also that there is some brain damage visible on the MRI.

Does anyone know what they may have meant by " brain damage " ? How can you even

tell this on a MRI?

They said that the CSF flow has been 100% cut off. She also has

Syringomyelia, I probably already said that. They also said that her brain stem

is

affected by this not just the cerebellum. The one thing that I did notice is

when

they were testing her eyes she was having a hard time focusing on the Doctor.

When he would have her follow his finger with just her eyes she was having a

hard time doing this. Also when he would get her to look side to side her

eye's wouldn't focus and start shaking back and forth.

has always had head, neck and backaches. We always thought the

backaches were because she has a pretty good case of Scoliosis. I took her to

the

doctor for this for years (first time when she was 3 years) but was always told

that her back wasn't pliable and there was nothing they could do. She just

had to learn to live with the pain.

, at 18 months started having these weird episodes. I'll explain them

best I can. She would start to walk across the room towards me kinda like how

you would see enstein walking in a movie. Real stiff with her arms out

like she was trying to balance herself. That stiff walk would quickly turn

into a " drunk " walk. She would have this look of terror on her face, her eye's

open like she just had the heck scarred out of her. She would be gasping for

air, almost like she was choking. After the first episode happened I knew I

needed to get to her because she was going down when this would happen. I would

grab her and pick her up and her head would go completely limp and the rest of

her body would start convulsing. Only way I can explain it is if you were

shaking a cooked spaghetti noodle. When these episodes were done she would sleep

the rest of the day. after one of the first episodes I took her to the

emergency room and they said nothing was wrong with her. When these episodes

started happening a couple of times per week I took her to the doctor and was

told

nothing was wrong. One day I went in her bedroom to check on her and found her

face first of the floor not breathing and blue. After that I made her an

appointment at Phoenix Children's Hospital. I told them exactly what was

happening and they told me she was holding her breath and passing out. I tried

to

tell them that is not what was happening and they wouldn't listen. They didn't

run any tests on her at all and sent us home. She stopped having these

episodes between 6-7 years old.

I don't know if she had any before 18 months or if that's just when I noticed

them because she had finally started walking at that time.

She didn't start talking until she was 18 months to 2 years old. I was told

she was the baby is didn't feel the need to talk yet. (older brother and

sister)

I honestly cannot ever remember her crying as a baby except after these

episodes that I already mentioned.

She was non stop sick as a baby. She either always had an ear infection or

bronchitis or both. She had bronchitis so much that they tested her for Cystic

Fibrosis when she was 2 years old. That came back negative and no other

testing was done.

She was born 5 weeks early and was in NICU for a week because they said that

her lungs filled with water during birth. Don't know if this has anything to

do with it or not but I thought maybe this is why she always had bronchitis.

When she was young we called her " our little crooked child " because she would

run almost sideways. Her left side of her body would run straight but it was

like she was dragging her right side.

For years she was in speech therapy at school and although she speaks well

now she still has a bit of a slur at times and she still sounds like a a child

when she speaks. When I say she speaks like a child I mean that her voice

hasn't really matured into an adult voice. Does that make any sense at all?

In school she really had to work very hard to get decent grades. She would

have a hard time remembering what she was learning. She worked her butt off

and graduated on time.

I really have no idea if this has anything to do with Chiari or not but when

she was 11 years old she started her period. (sorry to any guys on this list)

She bled very bad for 63 days. They tried everything to get her to stop and

nothing worked. They even tested her for cancer. It finally got to the point

that they felt they had no other choice but to do a hystorectomy because she

was going down hill. The day before that appointment she just completly

stopped bleeding. She was in bed after this for 3 months and not allowed to go

out

in the Arizona heat. We were told that her system was so depleted that if she

got over heated she could go into a coma. That was NOT a fun situation for an

11 year old.

I'm sure there is more things that I haven't mentioned here but to be honest

I've been a bit of a zombie since her appointment.

Around 5th grade she stopped getting sick so much and everything seemed

pretty much normal with the exception of her struggling in school and her head,

neck and back pain. Well, except for sinus infections and tonsillitis and

strep.

She's on antibiotics now for a sinus infection.

I'm sorry I have written so much. It's weird because things she has gone

through makes so much more sense now but at the same time I feel so confused. I

don't understand why it took so long to diagnose this. I don't know what

problems she has had that were caused by this. I don't know if this is what she

has been struggling with all her life why the symptoms have changes so much over

time. I don't know what to expect from the surgery. She is scheduled for

surgery on the 22nd. How long is the surgery usually?

Does anyone know what the down time is for this kinda surgery? She's bummed

because she wants to get back to work and start college. She wants to be an

elementary school teacher and was looking forward to her first semester at

school. Now everything is up in the air.

The surgeon said that with this surgery if everything goes as it should they

expect that she will have a possible 95% recovery. I have no idea what this

means because I'm so used to the person that is now. When you look at

her you would never know that anything is wrong.

What happens if my daughter decides not to have surgery after all? Her

doctor said without surgery her future prognosis isn't a good one but he didn't

go

beyond that. I should have asked but to be honest I was a bit shocked already

by what we were hearing.

I have read that this could be genetic. Should I have my other two children

tested for this? Myself and husband?

I read one web sight that said up to 50% of Chiari 2 patients die as adults

with our without treatment. Is this true?

Really stupid question here but can this have anything to do with how tall

you are? My 22 year old son is 6'4 " and my 21 year old daughter is 5'8 " .

is only 5'2 " .

You know has always ate Tylenol and Motrin like candy. To the point

that when she was 15 I put all pain killers under lock and key thinking that she

was addicted to them. I really feel bad about that now.

Anyway thank you for letting me vent here. If anyone can give me information

please feel free. I have read so much on the net that it's really confusing

at times. Please be honest because I really need to know what we're dealing

with here. I figured that this list would be a good place to find info from

people dealing with the same condition.

Thank you,

ps.... it may take a few days for me to respond to anyone because my husband

is having surgery in the morning to fix a broken shoulder and slap lesion. I

have a feeling he's going to keep me busy.

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