Re: nueroligist says....

[Guest guest]

Hi Christel, Ask to be refferred to a neurosurgeon for ruling out ACM

as a problem. Your Mri Scan does show ACM? Alot of docs believe this

means nothing that ACM 1 is not symptomatic...I was orginally dx with

complicated migraines..and the one I really love is ...Psycosomatic

illness!! recommended a psychiatric evaluation...well I think it was

my docs who needed the pyschiatrist appt.

I had my ACM analedged after going to a neurosurgeon.

Don't bother with neurologists, they are a big waste of time!

Sincerely Ann

[Guest guest]

Dear Christel:

My daughter was 1st diagnosed w/fibromyalgia in 95'.. her main symptoms

were pain & fatigue and headaches. She was diagnosed by a

rhuematologist. They gave her muscle relaxants, antidepressants & then

began pain meds....

In 96'her fibromyalgia got progressively worse after a relatively

" mild " whiplash injury in 99' this magnified the headaches, pain,

fatigue, and other symptoms started showing up like balance, eyesight,

bowel etc... that I quit believing it was fibromyalgia and started

looking for another reason...

That reason was: chiari I and cervical stenosis. We truly believe that

alot of her " Fibro " symptoms disappeared after her decompression

surgery. She too had what many consider a mild herniation, 3-4mm which

was also worse on one side, but she also has congenital stenosis, in

her neck and upper back.

If I were you, I would see a neurosurgeon not a neurologist...

especially if your symptoms continue to worsen. I only wish we had

been able to discover her real problem sooner, when her symptoms were

only headaches, pain and fatigue....so that all the other

" nuerological " symptoms that she ended up suffering from, could have

been prevented.

Hope this helps

Dori

mom of Kari 23y/o

3 mths post-op

[Guest guest]

Christel,

If the antidepressant your neurologist prescribed is a tricyclic, it might help

with some of your symptoms. Tricyclics can improve deep sleep, which can give

the body an opportunity to repair wear and tear and thereby alleviate some aches

and pains. If you are having difficulty falling asleep or staying asleep, I

recommend you give it a try. . .while you find yourself a good nsg.

I have been on nortriptyline, a tricyclic antidepressant, for almost a year. It

has helped me, though it has in no way solved the problem.

Best wishes,

Bekah in Maine

Drew7378@... wrote:

> Well I saw the nueroligist for the first time today. he said that he did not

> think it was my acm1 that is causing any of my symptoms.

> He says that I have fibromaylasia, or whatever that is. Wrote 4 scripts.

> Then said it was migrains. I told him they were constant and he said that is

> possible.

>

> He did say that he thought maybe I needed a blood patch from the epidural,

> and that is something we would look into. But as far as ACM1, he says that it

> is just a coincedence that we found it at the same time.

>

> I went on to say that I heard from many of you that it did not matter what

> the herniation was, and he said do not believe everything I hear online.

>

> Told me to come back in a month and that surgery was silly to even think of.

>

> Also said he saw no reason for a spine MRI, one of the scripts is an

> antidepressant.

>

> I do not know what to think, is he right?

>

> What is fibromaylasia. Sorry for spelling, lol? Help me, please.

>

> P.S. He also said that my right reflexes were slower than my left, any of

> you have that?

>

> Christel

>

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[Guest guest]

Drew7378@... wrote:

> Well I saw the nueroligist for the first time today. he said that he did not

> think it was my acm1 that is causing any of my symptoms.

> He says that I have fibromaylasia, or whatever that is. Wrote 4 scripts.

> Then said it was migrains. I told him they were constant and he said that is

> possible.

> Also said he saw no reason for a spine MRI, one of the scripts is an

> antidepressant.

Dear Christel,

Please go and see a neurosurgeon before you get caught up in a nasty whirlpool

of

misconceptions (on the neurologist's part.) A neurosurgeon could give you a

more

informed opinion about whether or not ACM is causing your symptoms.

This neurologist doesn't sound like he knows squat about ACM, so I'd dump him

quick and see someone who knows what they are talking about.

Good luck,

Sheila

[Guest guest]

Christel and all the newbies,

<<Well I saw the nueroligist for the first time today. he said that he did

not

think it was my acm1 that is causing any of my symptoms. >>

Your doctor is " texbook " educated on Chiari and has had no experience with

Chiari patients and their problems. Doctors and radiologists are taught that

some herniation is " normal. "

My daughters neurologists also advocated " no surgery " but her neurosurgeon

was a whole different ball game. At least the poor darling didn't get a

script for antidepressants. I really hate hearing that one.

Why don't you try looking for a doctor recommended by someone in the group?

You would feel much better speaking with an expert in Chiari. Someone who

deals with this on a regular basis.

My vote is: BROOM HIM

Hang in there,

Beth

Bakersfield, CA

daughter Alyssa 13, ACM 1 decompressed 3/26/99 UCLA

[Guest guest]

christal please demand your pcp send you to a neurosurgeon. when i went to

a neuroligist he too only wanted to treat the symtoms not the overall

problem after getting on the internet and finding more info, i found out how

many other problems i'm having are directly related to acm1. the nsg

immediately said clean up the surgery site(i had a slight acne problem back

there), and then we would discuss surgery. the neurologist anly wanted to

try drugs(((they dont work)))

best of luck

tom in tucson

motlorac#netzero.net

Re: nueroligist says....

> Christel,

> If the antidepressant your neurologist prescribed is a tricyclic, it might

help

> with some of your symptoms. Tricyclics can improve deep sleep, which can

give

> the body an opportunity to repair wear and tear and thereby alleviate some

aches

> and pains. If you are having difficulty falling asleep or staying asleep,

I

> recommend you give it a try. . .while you find yourself a good nsg.

>

> I have been on nortriptyline, a tricyclic antidepressant, for almost a

year. It

> has helped me, though it has in no way solved the problem.

>

> Best wishes,

> Bekah in Maine

>

> Drew7378@... wrote:

>

> > Well I saw the nueroligist for the first time today. he said that he

did not

> > think it was my acm1 that is causing any of my symptoms.

> > He says that I have fibromaylasia, or whatever that is. Wrote 4

scripts.

> > Then said it was migrains. I told him they were constant and he said

that is

> > possible.

> >

> > He did say that he thought maybe I needed a blood patch from the

epidural,

> > and that is something we would look into. But as far as ACM1, he says

that it

> > is just a coincedence that we found it at the same time.

> >

> > I went on to say that I heard from many of you that it did not matter

what

> > the herniation was, and he said do not believe everything I hear online.

> >

> > Told me to come back in a month and that surgery was silly to even think

of.

> >

> > Also said he saw no reason for a spine MRI, one of the scripts is an

> > antidepressant.

> >

> > I do not know what to think, is he right?

> >

> > What is fibromaylasia. Sorry for spelling, lol? Help me, please.

> >

> > P.S. He also said that my right reflexes were slower than my left, any

of

> > you have that?

> >

> > Christel

> >

> > ------------------------------------------------------------------------

> > WACMA Site: http://www.pressenter.com/~wacma

> >

> > Your Personal support group member page:

http://www.eGroups.com/group/chiari/

> >

> > **Avoid List Congestion:

> >

> > Unsubscribe from this list: mailto:chiari-unsubscribeegroups

> >

> > Contact list mgmt: mailto:chiari-owneregroups

> >

> > ------------------------------------------------------------------------

> > eGroups.com Home: /group/chiari/

> > - Simplifying group communications

>

>

> ------------------------------------------------------------------------

> WACMA Site: http://www.pressenter.com/~wacma

> Your Personal support group member page:

http://www.eGroups.com/group/chiari/

> **Avoid List Congestion:

> Unsubscribe from this list: mailto:chiari-unsubscribeegroups

> Contact list mgmt: mailto:chiari-owneregroups

>

> ------------------------------------------------------------------------

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>

>

>

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[Guest guest]

judy

from tom in tucson

my list of symtoms

extreme headaches, 8 years continuos

blurry vision, hypersensitivity to light

ringing in my ears, hypersensitivity to noise, can no longer even think of

driving

even if i wasnt on strong pain meds.

muscle weakness arms, hands, legs, feet(i can no longer hold my hands over

my head, its even hard to brush my teeth now)

tingling and coldness in hands and feet.

dizzyness unsteady gait.

fatigue

sleepapnea

speech impairments (its like i cant use words i've used all my life)

bowel movement problems.

frequent urination.

choking, sometimes waking me up in middle of night, sometimes when i'm

trying to drink fluids.

problems get worse if i have consitpated bowel movement, pain worsens, i'm

so dizzy i cant stand up rigth away.

i would have had no idea that these were'nt all related without this sight

thanks so much everyone. hopefully surgery will be set on my feb 10, follow

up with nsg dr jack dunn. wacma list has two doctors listed in phoenix i

called them, one of them reffered me to his office.

thanks to all, especially my wife who has been extremely supportive thru

this, also a lot of help from my wifes mother and grandmother too

tom in tucson

motlorac@...

Re: Re: nueroligist says....

> Tom,

>

> You mentioned your " other symptoms " could you tell me what they are.

>

> Thanks

>

>

> Judy (phoenix)

>

> > christal please demand your pcp send you to a neurosurgeon. when i

went

> to

> > a neuroligist he too only wanted to treat the symtoms not the overall

> > problem after getting on the internet and finding more info, i found out

> how

> > many other problems i'm having are directly related to acm1. the nsg

> > immediately said clean up the surgery site(i had a slight acne problem

> back

> > there), and then we would discuss surgery. the neurologist anly wanted

to

> > try drugs(((they dont work)))

> > best of luck

> > tom in tucson

> > motlorac#netzero.net

>

>

>

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[Guest guest]

Judy

my list of symtoms from tom in tucson

extreme!!!!headaches going on 8 yrs continuos no relief

blurry vision

dizzyness

arms feel weak

coldness hands and feet

tingling also in hands and feet

fatigue

ringing in my ears

sleep problems; no matter how much sleep i get i'm still tired

choking, sometimes waking me up in middle of night, sometimes while drinking

bowel movement problems, frequent urination

speech problems, forgetting what i was saying or not being able to say the

word i mean, like all the sudden cant remember that word.

symtoms are worse with exertion after bowel movements i have to wait

sometimes before i can stand up, pain and dizzyness so bad.

forgetfulness

extreme sensitivity to light and sound, couldn't drive now even if wasnt on

strong pain meds.

i used to be a ballroom dance instructor now i cant even listen to music,

let alone no longer having good balance.

i can no longer have my hands over my head, they fall asleep immediatly

its even hard to brush my teeth now

thanks so much to everyone for showing how this is a related. i never knew

to tell doctors about everything because so many doctors said the headaches

were only in my imagination

tom in tucson

motlorac@...

totally free internet service its great

Re: Re: nueroligist says....

> Tom,

>

> You mentioned your " other symptoms " could you tell me what they are.

>

> Thanks

>

>

> Judy (phoenix)

>

> > christal please demand your pcp send you to a neurosurgeon. when i

went

> to

> > a neuroligist he too only wanted to treat the symtoms not the overall

> > problem after getting on the internet and finding more info, i found out

> how

> > many other problems i'm having are directly related to acm1. the nsg

> > immediately said clean up the surgery site(i had a slight acne problem

> back

> > there), and then we would discuss surgery. the neurologist anly wanted

to

> > try drugs(((they dont work)))

> > best of luck

> > tom in tucson

> > motlorac#netzero.net

>

>

>

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