it's my turn to share....take aim...

[Guest guest]

ACM'ers,

Hello all! Well i guess it's my turn to share my story and put

the crosshairs on myself for a minute. Those of you with sore toes

get first dibs.

My name is jason d. beckler. I am 29 years old,married with two

beautiful girls(5 & 2) and a new one on the way(ACM didn't effect the

steak and taters). I am in the Air Force as a recruiter and have been

on active duty for 8 and a half years. I'm stationed in southern

california in the booming town of Temecula.

Six years ago I started to have mild headaches with sudden

bursts of pain when i sneezed,snorted(as males do), or sudden light

change. I went to see the doctor and he said it was job stress

related and told me to just relax after work...good enough...I then

noticed a little black floater in my right eye, went to see the eye

doc... " dont worry " he said " it's nothing " ...good enough...still the

headaches linger....I became a competing body builder at about this

same time(natural bodybuilder..no roids)...i would get headaches

sometimes from lifting but whats a little pain? I stopped

bodybuilding and moved into powerlifting...more pain...After i

returned from a tour(5 months) in Saudi Arabia, I was the strongest

and biggest i had ever been in my life. i was 6' 210lbs 8% bodyfat...

when i got home me and the misses were stirring the pot in the

shower...lol...i heared the doorbell ring so i got out grabbed the

towel and proceded down stairs. I slipped and fell down the stairs

breaking my left thumb in two places... AND THERE WAS NO ONE AT THE

DAMN DOOR EITHER!!!...or the sound of a big naked man falling scared

them off...Well from that point is when my problems really

started...I lost all feeling in my left hand and some in my right...

shoulders started to hurt and my right leg would go numb sometimes...

brought it up to the Docs...they said it was all in my head....good

enough...July 99 i started to have a chain of severe headaches that

would knock me to the floor..about 1 every 20 seconds for about 10

minutes total...went to emergency had a CT scan they saw nothing gave

me a pain releiver and sent me home....july 2000 started having a

really annoying eye twitch that would not stop. went to eye doc got

glasses and he refered me to Nuero...he schedualed an MRI on

sep13...and TADAAAA i was Dx'd with ACM1 20mm with Syrinx. Life is so

amazing one minute you think your healthy the next minute your

naked,wet,a broke thumb and on the path to being Dx with ACM. It

doesn't get any better than that people.

thanks for listening,

jason ;^)

Here's a list of my symptoms:

slowly losing vision

muscular weakness/pain- mild to severe

constant dull headache(always)

peircing,sharp headache(15-20sec)5-20x per day, almost knock me out

eye twitch

painful numbness-hands,shoulders,right leg,middle back

insomnia- sleeps a waste of time anyway right?

swaying

loss of balnce- constantly

liquid sound in neck

throbbing in neck and shoulders

tinitus

pain on left side of face-especially during bad headache

to many different sounds cloud me up

variable short term memory loss- hey who wrote that?

there's others but that's enough for now...i'm sure more will crop

up..boy isn't ACM beautiful.

[Guest guest]

In a message dated 09/28/2000 2:50:06 AM Eastern Daylight Time,

jason.beckler@... writes:

<< to many different sounds cloud me up >>

,

Could you please explain this one and give some examples. My son Bryce (6

years old, ACM1/11mm, no syrnx) started school this year and I know he is

sensitive to light and sound. When we toured the school he refused to go

into the lunch room b/c it was " too loud " . On the first day he went and has

been going. We have developed a problem this month, while in the lunch room

he often gets in trouble for " shouting at others " I am wondering if this is

chiari related perhaps he can't hear himself over the noise level. Not that

I am one of those " my kid can do no wrong " moms.

Thanks

[Guest guest]

This symptom has been one of the harder ones to explain to my doctors.

I have this both visually and audibly.

Part of it is what I call " TMI " , Too Much Information. The visual part

makes it really hard to travel in cars (I have to keep my eyes shut, and

the seat reclined - I usually take an anti-nausea medication before

travelling, too). I have characterized the visual disturbance as a mild

hallucinogenic experience to my doctors.

Many of them look at me like I am crazy, however, my PCP and one of my

neurologists attribute it to a disturbance in my ability to correctly

process images - pattern recognition & processing.

In it's most profound times, I cannot recognize some images, particularly

printed words. Before I realized how dangerous of a driver I had become, I

got lost several times (and I *never* get lost). I now rarely drive. I have

made coffee by putting the creamer in the brewer, and adding coffee grounds

to the cup of brewed creamer. LOL I have a friend who was trapped in the

upstairs of their house all day until her husband came home because she

could not find the stairs. They were there, she just could not recognize them.

The auditory thing is quite similar. As the symptom gets worse, everything

turns into noise, rather than things that I recognize. At its worst, I

appear to be partially deaf. It becomes quite difficult for me to

understand people, even in a quiet environment, and I do become somewhat

phonophobic (is that a word? I just want NO NOISE around me.). But my

hearing tests are normal, even above average for my age. Music,

particularly Mozart, seems to calm this problem. Don't ask me why, I have

no clue. " Music soothes the savage beast " ?

These symptoms increase in direct proportion to my headaches, including

those masked by medication. Some of my doctors attribute some of the

symptoms, particularly the TMI, as an aura effect of migraines.

I hope that this helps. It is a confusing problem, and hard to explain to

people. I can tell it is still confusing to me - this note is really badly

organized. Sorry.

--

-sylvan

At 08:31 AM 10/2/00 -0400, myboysmom@... wrote:

>In a message dated 09/28/2000 2:50:06 AM Eastern Daylight Time,

>jason.beckler@... writes:

>

><< to many different sounds cloud me up >>

>,

>

>Could you please explain this one and give some examples. My son Bryce (6

>years old, ACM1/11mm, no syrnx) started school this year and I know he is

>sensitive to light and sound. When we toured the school he refused to go

>into the lunch room b/c it was " too loud " . On the first day he went and has

>been going. We have developed a problem this month, while in the lunch room

>he often gets in trouble for " shouting at others " I am wondering if this is

>chiari related perhaps he can't hear himself over the noise level. Not that

>I am one of those " my kid can do no wrong " moms.

>

>Thanks

>

[Guest guest]

This symptom has been one of the harder ones to explain to my doctors.

I have this both visually and audibly.

Part of it is what I call " TMI " , Too Much Information. The visual part

makes it really hard to travel in cars (I have to keep my eyes shut, and

the seat reclined - I usually take an anti-nausea medication before

travelling, too). I have characterized the visual disturbance as a mild

hallucinogenic experience to my doctors.

Many of them look at me like I am crazy, however, my PCP and one of my

neurologists attribute it to a disturbance in my ability to correctly

process images - pattern recognition & processing.

In it's most profound times, I cannot recognize some images, particularly

printed words. Before I realized how dangerous of a driver I had become, I

got lost several times (and I *never* get lost). I now rarely drive. I have

made coffee by putting the creamer in the brewer, and adding coffee grounds

to the cup of brewed creamer. LOL I have a friend who was trapped in the

upstairs of their house all day until her husband came home because she

could not find the stairs. They were there, she just could not recognize them.

The auditory thing is quite similar. As the symptom gets worse, everything

turns into noise, rather than things that I recognize. At its worst, I

appear to be partially deaf. It becomes quite difficult for me to

understand people, even in a quiet environment, and I do become somewhat

phonophobic (is that a word? I just want NO NOISE around me.). But my

hearing tests are normal, even above average for my age. Music,

particularly Mozart, seems to calm this problem. Don't ask me why, I have

no clue. " Music soothes the savage beast " ?

These symptoms increase in direct proportion to my headaches, including

those masked by medication. Some of my doctors attribute some of the

symptoms, particularly the TMI, as an aura effect of migraines.

I hope that this helps. It is a confusing problem, and hard to explain to

people. I can tell it is still confusing to me - this note is really badly

organized. Sorry.

--

-sylvan

At 08:31 AM 10/2/00 -0400, myboysmom@... wrote:

>In a message dated 09/28/2000 2:50:06 AM Eastern Daylight Time,

>jason.beckler@... writes:

>

><< to many different sounds cloud me up >>

>,

>

>Could you please explain this one and give some examples. My son Bryce (6

>years old, ACM1/11mm, no syrnx) started school this year and I know he is

>sensitive to light and sound. When we toured the school he refused to go

>into the lunch room b/c it was " too loud " . On the first day he went and has

>been going. We have developed a problem this month, while in the lunch room

>he often gets in trouble for " shouting at others " I am wondering if this is

>chiari related perhaps he can't hear himself over the noise level. Not that

>I am one of those " my kid can do no wrong " moms.

>

>Thanks

>

[Guest guest]

Sylvan wrote sometime in the past few days:

<<In it's most profound times, I cannot recognize some images, particularly

printed words. Before I realized how dangerous of a driver I had become, I

got lost several times (and I *never* get lost). I now rarely drive. I have

made coffee by putting the creamer in the brewer, and adding coffee grounds

to the cup of brewed creamer. LOL I have a friend who was trapped in the

upstairs of their house all day until her husband came home because she

could not find the stairs. They were there, she just could not recognize

them.>>

>snip<

<<These symptoms increase in direct proportion to my headaches, including

those masked by medication. Some of my doctors attribute some of the

symptoms, particularly the TMI, as an aura effect of migraines.>>

Absolutely! I've had this at work and it is, um, embarassing! I wasn't

sure if this was a side effect of Neurontin or ACM or a little of both. The

way I see it, I just can't think. Stupid little things that I know like the

back of my hand and have done for a very long time seem to be a challenge

sometimes.

This, in general, happens in conjunction with headaches. I will be doing

something and in the middle of it I'll stop and think, " What was I doing? "

It's really scary at my age (26) to have this happen. Are there drugs or

anything we can do to help reduce this?

acm1 5mm, no surgery (yet...goin' lookin' for syrinx tonight)

arachnoid cyst 1.5 " diameter (sumo wrestling with my cerebellum)

[Guest guest]

Sylvan wrote sometime in the past few days:

<<In it's most profound times, I cannot recognize some images, particularly

printed words. Before I realized how dangerous of a driver I had become, I

got lost several times (and I *never* get lost). I now rarely drive. I have

made coffee by putting the creamer in the brewer, and adding coffee grounds

to the cup of brewed creamer. LOL I have a friend who was trapped in the

upstairs of their house all day until her husband came home because she

could not find the stairs. They were there, she just could not recognize

them.>>

>snip<

<<These symptoms increase in direct proportion to my headaches, including

those masked by medication. Some of my doctors attribute some of the

symptoms, particularly the TMI, as an aura effect of migraines.>>

Absolutely! I've had this at work and it is, um, embarassing! I wasn't

sure if this was a side effect of Neurontin or ACM or a little of both. The

way I see it, I just can't think. Stupid little things that I know like the

back of my hand and have done for a very long time seem to be a challenge

sometimes.

This, in general, happens in conjunction with headaches. I will be doing

something and in the middle of it I'll stop and think, " What was I doing? "

It's really scary at my age (26) to have this happen. Are there drugs or

anything we can do to help reduce this?

acm1 5mm, no surgery (yet...goin' lookin' for syrinx tonight)

arachnoid cyst 1.5 " diameter (sumo wrestling with my cerebellum)

[Guest guest]

> This symptom has been one of the harder ones to explain to my

doctors I have this both visually and audibly.

> Part of it is what I call " TMI " , Too Much Information. >>

There is a condition call Sensory Integration Dysfunction, and it

seems as though a fair number of chiarians are affected by this to

one degree or another. To read all about it, go to Yahoo or

Google.com and type in Sensory Integration Dysfunction.

Or visit:

http://www.comfortconnection.org/sensory_integration_dysfunction.htm

Chip

Woodbury Computerworks

6043 Hudson Road Suite 100

Woodbury, MN 55125

Http://www.pressenter.com/~chip/computers.htm