MY STORY

[Guest guest]

From the time I was nine yrs old I have ACM but misdiagnosed. AT 9 yr

my cramped up and for about three wks I couldn't walk. The dtrs told

my mother I was have growing pains. When I was about 13 I start my

period (the worst cramps)and I got (IT) I couldn't. My legs and back

would cramp up with pressure. Then I when I reach 16 I started

having terrible headaches and thobing pains in my neck. I started

seeing a chirco(Bone Doctor). I remember him telling me that I had a

problem with my vertebre/neck and I needed treatment. I went for

awhile but nothing may me feel better. At about 24 yrs I experienced

the same pains in my neck especially when I was laughing went back to

the dtr same treat (PT) but nothing became of it until now.

March 1999 I woke about 4:30am with an excurating headache on the

leftside of my head starting from behind my ear across my forehead.

The right side of face had gone numb and sloping a bit.

The first dtr said I had a sinsus infection. I suffered for the days

before I asked the dtr for she/he was crazy. That's when I saw a

ENT. The ENT said I had all the sign of Bells Palsy but that

something else was going on as well. This ENT sent for a MRI. That

was my first introducing to ACM.

The study read: Syringohydromyolia involving the proximal cerival

dord from C2 through C4 extending to the C4-5 disc space. A fusion

of the C% and C6 vertebral - What does this mean????

My brain sticking out??? Build-up fuilds???? A Cavity in my spine???

Anyway the Neurosurgeon said I need surgery right away or I would

be parazleyed. May 1999 I had the surgery. I was alright for a

couple of days. On the day of my release from the hospital, I pasted

out from an excurating headache. The MRI showed nothing.

Two wks later back in the hospital with fuild on my brain. The dtr

decided not to do surgery. They gave me a duretic and sent me home.

A couple of months later I started complaining of the same sypmtoms.

July of 2000 the dtr office told me there nothing else they could do

for and sent to a Neurospecailist.

New medications, same sypmtoms - New Neurosurgeon - 4/01 says there

some fuild there but not enough to warrant surgery.

6/1 I notice a difference in the left side of the body (swelling)

7/1 considerable swelling and symptoms getting worst and new sypmtoms

were developing. Middle of July became extremely weak unable to

walk alone. The dtrs sent for blood test(Lyme, lupus, and kidney

etc., all are fine).

I had a MRI which shows cervical spine - the sprinx has gone 5mm

(10/99) to 3mm (2/00-4/01) to back 5mm (7/01) from 3mm ap (10/99) to

2mm ap (2/00-4/01) back to 3mm ap dimension and a length of 3.3mm.

I not quite sure what this means. Other than a build of fuild in my

spine pushing on my cords. This is causing a deal anxiety.

Symptoms - numbness/tinglying in feet/hands/legs, pain in legs and

left side of body. strange and unbearable sensations, weak stomach,

swollen glands, left side of body is swollen as well - last check

about 4 " (taking H20 pill), vertigo sitting, standing or walking,

pressure/tinglying in my head. Lack of vision, taste, hearing (oh my

smell came back-there a skunk outside), loss of strenght sensative to

light and certain sounds. My mouth/jaw is going through some changes

too.

I surgery is schedule for August 6

Needless to say I am terrified -

Any suggestions - PS THANKS FOR LISTENING

Lenore