RE: newly diagnosed

May 9, 2002

~

~Hi group,

~ I've just joined this group, as I was diagnosed only a few days

~ago.

Welcome! This group holds a wealth of information. Should you experience

something questionable, unusual, or unexpected in all likelihood someone

here has been through it or written about it. When I first joined (about 5

months ago) what proved to be of the most help was exhausting the wacma home

page. It'll give you info from symptoms to beware of to non-surgical

treatment (i.e. physical therapy).

~I have an appointment with a neuro surgeon on Tuesday, May 14.

Again, go to the wacma home page. There is a list of important questions to

ask of your neurosurgeon on that page. Another resource you might want to

check out is the American Syringomyelia Alliance Project web site

www.asap4sm.com . I did not see any mention of syrinx in your post, but it

helps to be informed, as syrinxes many times go hand in hand with Chiari.

~Until then, the only information I know came from my MRI results:

~Chiari Type I Malformation. The crazy thing is, my first cousin was

~diagnosed a year ago when she was 18 with the same thing. I'm 18

~right now, so it seems like a pretty big coincidence. I know they

~say that it hasn't been proven to be genetic or hereditary, but I'm

~pretty sure that it is.

Well, it may not be officially " genetic " but it is normally a congenital

condition (meaning you were born like that). Some people go their whole

lives and do not know they have Chiari. Some people (like myself) suffer a

trauma and THEN the beast decides it's gonna act up. There has even been a

case reported of a herniation that developed POST TRAUMA and cleared itself

up!

~ Anyways, I've been suffering from headaches, dizziness, black-

~outs, and nausea for years now. It's good to have a diagnosis, but

~I'm pretty sure this isn't a diagnosis I want to have. I'm really

~scared, confused, overwhelmed, and I have no idea what to expect.

~I've read a lot of information in the past few days, but I still

~don't feel like I know much of anything. I guess the main question

~on my mind is, is surgery inevitable? Will it even help? Will I

~continue to get worse and worse for my whole life?

Not necessarily, to all three of those questions. There are medications out

there witch can alleviate symptoms like headaches and nausea. There is

physical therapy that can help with things like dizziness and blackouts

(cranial sacral therapy and Canalith Repositioning Procedure for your

vestibular system). If these sort of things do not help, then maybe surgery

would be inevitable, if your symptoms are so bad that they interfere with

everyday living.

One other concern

~I'm having is about my mental capacity. I have a very high IQ, do

~well in school, I know calculus, I am nearly fluent in French. I

~love to learn. Am I going to have mental problems as I get older?

Most people do, dear!! I, too, graduated at the top of my class (#23 out

of 225), musically prodigious and at the time fluent in German. Just keep

your mind active. Read, read, read, and then read some more. Take up an

instrument or a class in statistics, whatever tickles your fancy. As with

anyone, I think the more little neuro-connectors we develop while we're

young the better off we are as we age. Sometimes Chiarians develop memory

problems, but from what I've seen it's mostly short term type things like

" what did I have for breakfast this morning " or forgetting to turn off the

coffee pot regularly or driving somewhere and forgetting where you're going

(been there, done that).

~Well, just writing all this out has made me feel a bit better. I'm

~glad I joined this group, and I'd appreciate any information you'd

~like to share with me. Thanks a lot!

I'd like to share with you my story. I hope it helps.

I'm 27 years old and was in a car accident on 11.29.01. 2 weeks prior to

this accident I had received a bill of complete health from my doc (annual

physical). There was no evidence of Chiari or syrinx at this time.

I was rear ended at a dead stop. I suffered for a few days from what I

thought was mere whiplash. Then the signs started that this was more than

muscle injury.

I went to my GP, got an MRI where the interpreting neurologist found a

syrinx. My GP prescribed Vioxx and Flexeril daily to ease my symptoms, but

they still became more unbearable daily. I was referred to a local nsg,

where I was then told I had Chiari 1 20+mm, and was recommended

decompression surgery to alleviate the pressure and hopefully some of the

symptoms, as well as (most importantly) resolve the syrinx which then

stretched 5 vertebrae. More extensive MRIs were done, and I took them to

another specialist in Burlington Ma. He gave me an identical diagnosis and

my surgery was on 2.21.02.

My symptoms pre-surgery were, in order of appearance (from the date of my

car accident):

tense neck, shoulder and back muscles

steadily increasing pressure in the base of my skull

migraine-type headaches

numbness left side, starting with face and ear, radiating down neck into arm

and leg

loss of short term memory

loss of fine motor function in hands, i.e. not able to type proficiently

anymore

loss of vision in left eye (went from 20/10 to about 20/200)

loss of hearing in left ear

bladder dysfunction

burning skin

" hot flashes " that would last up to four hours at a time

electric " bolts " down my arms

loss of balance

severe vertigo

I was in the hospital for 2 days.. one in recovery, one in a regular

room... and then sent home with pain meds, steroids, and anti-nausea

medication. I started physical therapy for the stiffness in my neck 4 weeks

post op, and it is still ongoing. I am by no means cured. My symptoms are

still here. They are, though, much less severe. I go for an MRI on May 17

to see if my syrinx has resolved.

Please write if you need support!!

Cheryl Sousa

May 9, 2002