New to Group

May 24, 2003

I hear ya! A friend of mine in Colorado said that when she asked the

doctor to do a FT3 and FT4 check on her he got so ticked that he

threw his clipboard across the room! She said he totally flipped

because SHE wanted the test done and HE didn't. She's retired

military so she goes to a VA hospital.. and really doesn't seem to

have a lot of choices in who sees her.

Ella

> We may not have the energy to kick their butts.. but there are

enough of

> us that now carry enough bulk where if we can get a head of steam

going

> down hill and land on them their gonna smush!

>

> I'm actually scared of going back to a doc.... If he starts acting

like a

> jerk I'm gonna be screaming and yelling and throwing shit where

they're

> gonna hear me a mile away and calling the cops to haul away the

crazy

> lady.....

>

> I'll never let another doc blow me off telling me I'm just fine...

it was

> that kind of care that cost me my thyroid gland, and for all

intents and

> purposes, my life.

>

> Topper ()

> http://toppertwo.tripod.com

May 24, 2003

I think that " low tolerance to BS " should be added to the list of

hypo symptoms. Don't you? LOL I'm right with ya, girls!

Ella

>

> Did you see a piece on the news about a female cop who was trying

to arrest a guy, and he took her gun from her, was about to shoot

her, and then a citizen ran over, took the gun away from the guy, and

then a BIG mamajama woman ran over and sat on the guy! It was all on

video from the cop cruiser. LOL

> I am like you, I am afraid I will really lose it if I have to

deal with one more idiot doc. Now I have to choose a local provider

for primary care. It's a real dilemma. If I really lose it, I will

be scary, and maybe end up on the evening news.

> Gracia

>

> We may not have the energy to kick their butts.. but there are

enough of

> us that now carry enough bulk where if we can get a head of steam

going

> down hill and land on them their gonna smush!

>

> I'm actually scared of going back to a doc.... If he starts

acting like a

> jerk I'm gonna be screaming and yelling and throwing shit where

they're

> gonna hear me a mile away and calling the cops to haul away the

crazy

> lady.....

>

> I'll never let another doc blow me off telling me I'm just

fine... it was

> that kind of care that cost me my thyroid gland, and for all

intents and

> purposes, my life.

>

> Topper ()

> http://toppertwo.tripod.com

>

May 24, 2003

ROFLMAO! Well said! I always thought that if we're big enough, we

could fake a faint and take the attacker down with us!! LOL

Ella

> It's always been in the back of my mind.. that I really needn't be

afraid

> of not being agile and mobile enough to defend myself... If I sit

down

> ain't no body gonna pick me up and kidnap me... and if someone

hurts me..

> all I have to do is fall on them.. either on the ground or against a

> wall.. they may still shoot me.. but they still ain't movin me....

>

> ...small consolation.. but you got to look at the positives in any

given

> situation, right?

>

> I would LOVE to see that film clip! hehehehe

>

> Topper ()

> http://toppertwo.tripod.com

>

> On Sat, 24 May 2003 11:21:32 -0400 " Gracia " <circe@g...> writes:

> >

> > Did you see a piece on the news about a female cop who was

trying

> > to arrest a guy, and he took her gun from her, was about to shoot

> > her, and then a citizen ran over, took the gun away from the guy,

> > and then a BIG mamajama woman ran over and sat on the guy! It

was

> > all on video from the cop cruiser. LOL

> > I am like you, I am afraid I will really lose it if I have to

deal

> > with one more idiot doc. Now I have to choose a local provider

for

> > primary care. It's a real dilemma. If I really lose it, I will

be

> > scary, and maybe end up on the evening news.

> > Gracia

May 24, 2003

That's bullshit.. VA hospital or not.. his job is to care for her health

and well being... he's a doctor and his job is to help people....

OOOOoooo that doc is soooo lucky it wasn't me there.. I would have shown

him what a woman my size can throw!

Not to mention a front row seat in a demonstration in the language of a

former truck driver....

Topper ()

http://toppertwo.tripod.com

On Sat, 24 May 2003 16:50:28 -0000 " Ella "

writes:

> I hear ya! A friend of mine in Colorado said that when she asked the

> doctor to do a FT3 and FT4 check on her he got so ticked that he

> threw his clipboard across the room! She said he totally flipped

> because SHE wanted the test done and HE didn't. She's retired

> military so she goes to a VA hospital.. and really doesn't seem to

> have a lot of choices in who sees her.

>

> Ella

May 24, 2003

Ella,

I've actually gotten out of a couple of situations with attitude.. I just

stand up to my full height.. and girth.. and face 'em down... Just stand

there and look 'em in the eye and ask them if they're brave enough to

give it a shot....

Being guys.. they think about it a minute.. but they gave me a look up

and down.. and walked away....

Topper ()

http://toppertwo.tripod.com

On Sat, 24 May 2003 16:55:45 -0000 " Ella "

writes:

> ROFLMAO! Well said! I always thought that if we're big enough, we

> could fake a faint and take the attacker down with us!! LOL

>

> Ella

May 24, 2003

Somehow, I do believe that! LOL

Ella

> Ella,

>

> I've actually gotten out of a couple of situations with attitude..

I just

> stand up to my full height.. and girth.. and face 'em down... Just

stand

> there and look 'em in the eye and ask them if they're brave enough

to

> give it a shot....

>

> Being guys.. they think about it a minute.. but they gave me a look

up

> and down.. and walked away....

>

> Topper ()

> http://toppertwo.tripod.com

June 24, 2005

Hi Jen... welcome aboard! )

You've come to a wonderful list for finding people with MS who live well and are great supporters and encouragers. )

Congratulations on graduation AND on your upcoming marriage!!! When is the date??

Hugs,

Challis

~~Seeking my dx;Daughter of a wise MSer;Mother of four and Mothering a fifth (18, nearing-15, 5½, 22 months and nearing 19);Married to my childhood crush, best friend, greatest supporter, partner in everything.The more I know the more I know I need to know.~~~~~~~~

Hi, I am living in NY currently and was just given a "probable" diagnosis of MS. I had an MRI which showed "unspecific" small lesions. I just had a spinal tap yesterday and it hurts a lot. My symptoms: started with blurry vision a year ago, followed by tingling/burning in the legs, other areas and then a two week episode of dizziness starting the day I graduated college. I've been feeling pretty good since then (about 6 wks later now), but I am just really scared about what might happen to me. I am in the middle of planning my wedding and trying to get started with a job and stuff. I get kicked off my parents' insurance in Jan. so I really need to get a job with insurance. Anyway, my family is kind of freaking out about it which almost makes me feel worse. The doctor acts like it's nothing to get too worried about. I just feel so lost right now, with my life kind of in limbo anyway and now this.... On top of a lot of other health issues such as candida, severe allergies, and scoliosis that causes a lot of pain. It's a very confusing time. I am lucky to have a guy who will stick by me through this though. Thanks for listening.-Jen

June 24, 2005

Hi Jen,

Welcome, I was diagnosed as "at risk" for ms in January. What ever that means, sounds like symantics to me. I have only had one attack, optic Neuritis, and unless you have 2 the wont officially diagnose you with MS only at risk. Anyway welcome aboard this is a great group with lost of advice and info to share.

Where in NY are you? I am also from NY, I work in NYC and live in westchester county. =)

Trish new to group

Hi,

I am living in NY currently and was just given a "probable" diagnosis of MS. I had an MRI which showed "unspecific" small lesions. I just had a spinal tap yesterday and it hurts a lot. My symptoms: started with blurry vision a year ago, followed by tingling/burning in the legs, other areas and then a two week episode of dizziness starting the day I graduated college. I've been feeling pretty good since then (about 6 wks later now), but I am just really scared about what might happen to me. I am in the middle of planning my wedding and trying to get started with a job and stuff. I get kicked off my parents' insurance in Jan. so I really need to get a job with insurance. Anyway, my family is kind of freaking out about it which almost makes me feel worse. The doctor acts like it's nothing to get too worried about. I just feel so lost right now, with my life kind of in limbo anyway and now this.... On top of a lot of other health issues such as candida, severe allergies, and scoliosis that causes a lot of pain. It's a very confusing time. I am lucky to have a guy who will stick by me through this though. Thanks for listening.

-Jen

June 24, 2005

Hey Trish you beat me to the question. I was going to ask Jen where in

NY she lived. I live in Queens on the border near Long Island. Well

welcome Jen and good luck. I still have a " probable MS " diagnosis and it

has been 9 years almost!

Jodi

June 24, 2005

I am also from ny but not downstate, i live exactly halfway between albany and syracuse. no one ever believes it but i've lived here most of my life and have never been to the city. how sad is that.

i was diagnosed in december on my 28th birthday and have other medical problems as well. the whole thing was very confusing and frightening at first. i have begun adjusting and the support and advice you will find here is tremendous.

carriettranquil@... wrote:

Hi Jen,

Welcome, I was diagnosed as "at risk" for ms in January. What ever that means, sounds like symantics to me. I have only had one attack, optic Neuritis, and unless you have 2 the wont officially diagnose you with MS only at risk. Anyway welcome aboard this is a great group with lost of advice and info to share.

Where in NY are you? I am also from NY, I work in NYC and live in westchester county. =)

Trish new to group

Hi,

I am living in NY currently and was just given a "probable" diagnosis of MS. I had an MRI which showed "unspecific" small lesions. I just had a spinal tap yesterday and it hurts a lot. My symptoms: started with blurry vision a year ago, followed by tingling/burning in the legs, other areas and then a two week episode of dizziness starting the day I graduated college. I've been feeling pretty good since then (about 6 wks later now), but I am just really scared about what might happen to me. I am in the middle of planning my wedding and trying to get started with a job and stuff. I get kicked off my parents' insurance in Jan. so I really need to get a job with insurance. Anyway, my family is kind of freaking out about it which almost makes me feel worse. The doctor acts like it's nothing to get too worried about. I just feel so lost right now, with my life kind of in limbo anyway and now this.... On top of a lot of other health issues such as candida, severe allergies, and scoliosis that causes a lot of pain. It's a very confusing time. I am lucky to have a guy who will stick by me through this though. Thanks for listening.

-Jen

June 25, 2005

Hi Jen:

Just want to welcome you to the group. There are a lot of caring people here. I look forward to hearing more from you.

winnie

June 25, 2005

Hi neighbor! I live at the south end of Conesus Lake, one of the finger lakes. I've only been to NYC once. jerry plows wrote:

I am also from ny but not downstate, i live exactly halfway between albany and syracuse. no one ever believes it but i've lived here most of my life and have never been to the city. how sad is that.

i was diagnosed in december on my 28th birthday and have other medical problems as well. the whole thing was very confusing and frightening at first. i have begun adjusting and the support and advice you will find here is tremendous.

carriettranquil@... wrote:

Hi Jen,

Welcome, I was diagnosed as "at risk" for ms in January. What ever that means, sounds like symantics to me. I have only had one attack, optic Neuritis, and unless you have 2 the wont officially diagnose you with MS only at risk. Anyway welcome aboard this is a great group with lost of advice and info to share.

Where in NY are you? I am also from NY, I work in NYC and live in westchester county. =)

Trish new to group

Hi,

I am living in NY currently and was just given a "probable" diagnosis of MS. I had an MRI which showed "unspecific" small lesions. I just had a spinal tap yesterday and it hurts a lot. My symptoms: started with blurry vision a year ago, followed by tingling/burning in the legs, other areas and then a two week episode of dizziness starting the day I graduated college. I've been feeling pretty good since then (about 6 wks later now), but I am just really scared about what might happen to me. I am in the middle of planning my wedding and trying to get started with a job and stuff. I get kicked off my parents' insurance in Jan. so I really need to get a job with insurance. Anyway, my family is kind of freaking out about it which almost makes me feel worse. The doctor acts like it's nothing to get too worried about. I just feel so lost right now, with my life kind of in limbo anyway and now this.... On top of a lot of other health issues such as candida, severe allergies, and scoliosis that causes a lot of pain. It's a very confusing time. I am lucky to have a guy who will stick by me through this though. Thanks for listening.

-Jen

June 25, 2005

<< Hi neighbor! I live at the south end of Conesus Lake, one of the finger

lakes. I've only been to NYC once. >>

Hi and Jerry!

I was in Palmyra, NY, just east of Rochester, until 2003. As a child, I

lived in Manchester (Thruway exit 43), vacationed at Keuka Lake (another Finger

Lake), and my mother lives in assisted living in Canandaigua (another Finger

Lake).

Wife to Shaun, the other grownup, mother to Andy, 23 bio - , 21, bio -

Sonal, 14, arrived age 6 from Mahipatram Rupram Ashram, Ahmedabad, Gujarat,

India - IFI and , 9, arrived from Hong Kong 12/14/00 - TediBear Adoptions.

Den mother to Marcus the happy beagle, Stella the mutt, Bullseye and Victor

the greyhounds, Pete the greyhound mix, Scooby the crazy beagle and Abby and

Anya the cats. - and ice storm survivor emeritus!

June 25, 2005

Hi and ,

There must be alot of New Yorkers with MS. When I was younger, every summer was spent in Canandaigua at Roseland Park. I have no idea if its even still there but I had a blast riding the indoor scramber that twirled around in the dark. As an 8 year old it was terrifyingly great. It doesn't seem that grand now lol

glorytg@... wrote:

<< Hi neighbor! I live at the south end of Conesus Lake, one of the finger lakes. I've only been to NYC once. >>Hi and Jerry!I was in Palmyra, NY, just east of Rochester, until 2003. As a child, I lived in Manchester (Thruway exit 43), vacationed at Keuka Lake (another Finger Lake), and my mother lives in assisted living in Canandaigua (another Finger Lake). Wife to Shaun, the other grownup, mother to Andy, 23 bio - , 21, bio - Sonal, 14, arrived age 6 from Mahipatram Rupram Ashram, Ahmedabad, Gujarat, India - IFI and , 9, arrived from Hong Kong 12/14/00 - TediBear Adoptions. Den mother to Marcus the happy beagle, Stella the mutt, Bullseye and Victor the greyhounds,

Pete the greyhound mix, Scooby the crazy beagle and Abby and Anya the cats. - and ice storm survivor emeritus!__________________________________________________

June 25, 2005

<< When I was younger, every summer was spent in Canandaigua at Roseland

Park. I have no idea if its even still there >>

I spent a lot of time there when I was young(er), too! The park has been

dismantled and sold to build condoes which haven't materialized, (quite the

controversy, as you may guess) and there is now a waterpark across the road from

the original site. They started charging admission to get in, instead of just

to ride, like most places seem to be now :-( and that was the beginning of the

end. An amusement park near Niagara Fallls bought a lot of the rides, and

equipment such as the skee-ball machines (believe it or not, we went there with

my kids, and I thought I recognized some things, so I asked a manager, and yup,

that's where they came from!). It's a big loss, I think, bc it was

reasonable, and covered a limited area, with a section for kiddie rides all

together,

and one for adult rides, which was great for families, or for grandparents to

take the gkids, sit on a bench in the kiddie section, and let the kids go.

Wife to Shaun, the other grownup, mother to Andy, 23 bio - , 21, bio -

Sonal, 14, arrived age 6 from Mahipatram Rupram Ashram, Ahmedabad, Gujarat,

India - IFI and , 9, arrived from Hong Kong 12/14/00 - TediBear Adoptions.

Den mother to Marcus the happy beagle, Stella the mutt, Bullseye and Victor

the greyhounds, Pete the greyhound mix, Scooby the crazy beagle and Abby and

Anya the cats. - and ice storm survivor emeritus!

June 26, 2005

,

Oh I am so happy someone else remembers it. I had so much fun there. How sad that it's gone. Maybe a trip out there this year is justified just to bring back some memories.

Thanks

glorytg@... wrote:

<< When I was younger, every summer was spent in Canandaigua at Roseland Park. I have no idea if its even still there >>I spent a lot of time there when I was young(er), too! The park has been dismantled and sold to build condoes which haven't materialized, (quite the controversy, as you may guess) and there is now a waterpark across the road from the original site. They started charging admission to get in, instead of just to ride, like most places seem to be now :-( and that was the beginning of the end. An amusement park near Niagara Fallls bought a lot of the rides, and equipment such as the skee-ball machines (believe it or not, we went there with my kids, and I thought I recognized some things, so I asked a manager, and

yup, that's where they came from!). It's a big loss, I think, bc it was reasonable, and covered a limited area, with a section for kiddie rides all together, and one for adult rides, which was great for families, or for grandparents to take the gkids, sit on a bench in the kiddie section, and let the kids go.Wife to Shaun, the other grownup, mother to Andy, 23 bio - , 21, bio - Sonal, 14, arrived age 6 from Mahipatram Rupram Ashram, Ahmedabad, Gujarat, India - IFI and , 9, arrived from Hong Kong 12/14/00 - TediBear Adoptions. Den mother to Marcus the happy beagle, Stella the mutt, Bullseye and Victor the greyhounds, Pete the greyhound mix, Scooby the crazy beagle and Abby and Anya the cats. - and ice storm survivor emeritus!__________________________________________________

June 26, 2005

Hi , my you are busy! I only have one husband, Mike - three kids, Jake,13 3/4 - , 11 and , 7 1/2 - one dog, Chance. 11 - two cats, Kitty. 11 - Angel, 2. I know about all those places you mentioned!!! It's nice to hear from you! glorytg@... wrote:

<< Hi neighbor! I live at the south end of Conesus Lake, one of the finger lakes. I've only been to NYC once. >>Hi and Jerry!I was in Palmyra, NY, just east of Rochester, until 2003. As a child, I lived in Manchester (Thruway exit 43), vacationed at Keuka Lake (another Finger Lake), and my mother lives in assisted living in Canandaigua (another Finger Lake). Wife to Shaun, the other grownup, mother to Andy, 23 bio - , 21, bio - Sonal, 14, arrived age 6 from Mahipatram Rupram Ashram, Ahmedabad, Gujarat, India - IFI and , 9, arrived from Hong Kong 12/14/00 - TediBear Adoptions. Den mother to Marcus the happy beagle, Stella the mutt, Bullseye and Victor the greyhounds,

Pete the greyhound mix, Scooby the crazy beagle and Abby and Anya the cats. - and ice storm survivor emeritus!__________________________________________________

June 26, 2005

Hi , yep Roseland is still there only they got bigger by adding a water park like everyone else! Maybe we met before!!! jerry plows wrote:

Hi and ,

There must be alot of New Yorkers with MS. When I was younger, every summer was spent in Canandaigua at Roseland Park. I have no idea if its even still there but I had a blast riding the indoor scramber that twirled around in the dark. As an 8 year old it was terrifyingly great. It doesn't seem that grand now lol

glorytg@... wrote:

<< Hi neighbor! I live at the south end of Conesus Lake, one of the finger lakes. I've only been to NYC once. >>Hi and Jerry!I was in Palmyra, NY, just east of Rochester, until 2003. As a child, I lived in Manchester (Thruway exit 43), vacationed at Keuka Lake (another Finger Lake), and my mother lives in assisted living in Canandaigua (another Finger Lake). Wife to Shaun, the other grownup, mother to Andy, 23 bio - , 21, bio - Sonal, 14, arrived age 6 from Mahipatram Rupram Ashram, Ahmedabad, Gujarat, India - IFI and , 9, arrived from Hong Kong 12/14/00 - TediBear Adoptions. Den mother to Marcus the happy beagle, Stella the mutt, Bullseye and Victor the greyhounds,

Pete the greyhound mix, Scooby the crazy beagle and Abby and Anya the cats. - and ice storm survivor emeritus!

__________________________________________________

July 29, 2005

Welcome aboard, Donna. )

I'm sorry you've not yet found your answers (dx), and hope it comes soon for you.

Challis

~~Seeking my dx;Daughter of a wise MSer;Mother of four and Mothering a fifth;Married to my childhood crush, best friend, greatest supporter, partner in everything.The more I know the more I know I need to know.~~~~~~~~

I just joined this group. I don't know that I haveMS. My doctor at first thought it was lupus but therheumatologist said I don't have it. Right now, sheis calling it an autoimmune disease affecting lungs,joints, balance and memory. Unrelenting fatigue is mymain symptom. I did fall weekend before last and crashed really hardagainst the ground. I'm still sore in my ribs alongmy right side.Here's a bit of an introduction: My name is Donna, Ilive in central WA state, I have three sons who livewith me. We have a variety of pets. I'm in theprocess of applying for SSDI, but I'm still working alittle bit each week. Two years ago I worked theequivalent of full time between two jobs. It gave mea major flare and I've not come out of it yet. Donna in WAIt does not require many words to speak the truth.--Chief ph

October 6, 2010

Yvona,

I totally agree with you. But the problem with this person is that

because of his little pain on certain positioning and unpredictable

movement-tic-reflex disorder he has to get other more routine-lime procedures

done with general anesthesia and the airway tube etc. and needs one or another

procedure pretty much annually and sometimes sooner than annually and the

medical folks have stated that while it is not good to miss any of the

recommended procedures it would also be wisest to find a way not have to have

one sooner than 6 mos with their goal being that of no more frequently than

every 12-18 mos. Unless of course there is some urgent or emergency need well

then that of course would come under a different rulings.

I had suggested a year or two ago that maybe there could be a way to combine one

of his more routine other general anesthesia based procedures with an MRI and

maybe depending on what transpires, than that could be arranged or something

could be worked out. Something interfered with that but we had no idea of even

any remote possibility of AC-M back then either.

So that's what this story is somewhat about and why a bit of trying to justify

and time things is going one.

Leann

> > > >

> > > > Hi Leann,

> > > >

> > > > Welcome to CCI, feel free to ask as many questions as you can

> > come up with.

> > > > We have some answers on our web site, and there are the archives

> > on the

> > > > support group site as well.

> > > >

> > > > A X-ray won't show the cerebellar tissues used for diagnosis.

> > Sometimes a CT

> > > > can pick up the diagnosis but not always.

> > > >

> > > > Kathleen

> > > >

> > > > _____

> > > >

> > > > From:

> > > > [mailto: ] On

> Behalf Of

> > > > leann40@

> > > > Sent: Sunday, October 03, 2010 1:43 PM

> > > > To:

> > > > Subject: New to Group

> > > >

> > > > Hello and thankyou for being here for support and for letting me

> > join your

> > > > group.

> > > >

> > > > On behalf of a close family member I think I have only one

> > question for now.

> > > >

> > > > Without automatically going in for an MRI, does anyone know if a

> > Chiari

> > > > Malformation can be fairly accurately ruled in as a possibility

> > or ruled out

> > > > beyond a doubt by a radiologist who is asked to make his

> > decision based on

> > > > results of a plain xray of the neck bones when taken from a side

> > view or

> > > > whatever view deemed necessary?

> > > >

> > > > Leann

> > > >

October 6, 2010

typo in third line: >>>>more routine-lime>>>>

correction in third line: more routine-like

That typo might have been too hard to figure out or I would have just let it go

as is.

Leann

> > > > >

> > > > > Hi Leann,

> > > > >

> > > > > Welcome to CCI, feel free to ask as many questions as you can

> > > come up with.

> > > > > We have some answers on our web site, and there are the archives

> > > on the

> > > > > support group site as well.

> > > > >

> > > > > A X-ray won't show the cerebellar tissues used for diagnosis.

> > > Sometimes a CT

> > > > > can pick up the diagnosis but not always.

> > > > >

> > > > > Kathleen

> > > > >

> > > > > _____

> > > > >

> > > > > From:

> > > > > [mailto: ] On

> > Behalf Of

> > > > > leann40@

> > > > > Sent: Sunday, October 03, 2010 1:43 PM

> > > > > To:

> > > > > Subject: New to Group

> > > > >

> > > > > Hello and thankyou for being here for support and for letting me

> > > join your

> > > > > group.

> > > > >

> > > > > On behalf of a close family member I think I have only one

> > > question for now.

> > > > >

> > > > > Without automatically going in for an MRI, does anyone know if a

> > > Chiari

> > > > > Malformation can be fairly accurately ruled in as a possibility

> > > or ruled out

> > > > > beyond a doubt by a radiologist who is asked to make his

> > > decision based on

> > > > > results of a plain xray of the neck bones when taken from a side

> > > view or

> > > > > whatever view deemed necessary?

> > > > >

> > > > > Leann

> > > > >

May 17, 2012

Welcome to the Group!

This is a wonderful place to be not just for information but for understanding

and support too. I know when I'm feeling down, frustrated, or like I'm going

crazy (lol) that I always can count on my fellow chiarians here to help lift my

spirits and get me through those tough times.

I wish you the best on your chiari journey. I hope you finally get the

validation and answers you need in NY. While I have never been there myself I

have heard 99% positive feedback about the doctors there. (nobody is perfect

and every patient is unique) They have literally saved many lives.

Debbie

Sent from my iPhone

May 17, 2012

Welcome to the group!!

I want to make sure that everyone knows that if you have any questions or

problems please do not hesitate to email me directly or send a email to:

-owner

Thank you,

New to Group

Hi Everyone. Im new to this and just wanted to introduce myself to you all. My

name is and I have been diagnosed with Chiari 1 malformation. I have

been to numerous neurologists and neurosurgeons and none of them want to do

anything for me except pain management! This has been going on for years!! Im

heading to the Chiari Institute on Monday the 21st(so happy to see someone that

understands this problem). I suffer everyday with pain and pressure, and I have

a 4 year old son, so being in pain makes it very hard to play and have fun with

my son. The dizziness makes it near impossible to drive at times, and driving

makes it worse anyway!! I love all the information I am getting from this group,

and it just makes me wonder how these Doctors that aren't chiari specialists can

just discount so many of us. It really upsets me that they don't even try to do

anything or even refer you to someone who specializes in it. It's almost like

they are making fun of you, and there is nothing wrong with you. I just don't

get it. This last neurosurgeon I saw basically made fun of the institute like

chiari isn't a real problem. I can't wait to see the doctors at the institute, I

feel this is the answer to getting my life back pain free, or at least off of

pain meds. I will post after my appt with the institute on monday. Can't wait.

May 17, 2012

, As we say in Girl Scouting, You Are Not Alone.Â Many of us have been

toÂ humiliating appointments with neuro specialist, who do not understand

Chiari.

Best wishes on Monday.Â Peggy

________________________________

To:

Sent: Thursday, May 17, 2012 6:38 AM

Subject: New to Group

Â