question

[Guest guest]

Hey guys....Laurie smiley@...

is trying to get more information from anyone that has seen Dr. Menenez ,,,She

asked once before and hasn't heard much....If you have any information for her,

either positive or negative...Please let her know...Thanks a bunch!

Best wishes,

Sally R

ACM..Decompression '91...

Hydro..VP shunt..2 revisions

Doing GREAT in Bethlehem,Pa with NO medications

[Guest guest]

I think I know what you are talking about. Its almost like the buzzing noise or

feeling. but when it happens if Im about to go to sleep I get a paralized

feeling and cant move or call out its so scarry. Is this even close to what you

are discribing?

Robin In Alabama

question

ok..I will describe this as best I can...

wondering does anyone else have this feeling when they lay down and...not

quite spinning but definately feels like movement in maybe a very slow

circular motion? Mine is always to the left (complimenting my walking these

days). Not like a make me nauseous thing but weird almost like a breeze

associated with the motion

....always left or I should say clockwise. can't figure out if it's just when

I am trying to go to sleep when it's really quiet in the house...except for

the obnoxious ringing in my ears... I have a weird feeling it's always there

though just more noticable when I try to sleep and there's nothing

distracting me.

love light and peace

Tam

[Guest guest]

I get this weird feeling (was worse before surgery) when I would lay down or

recline it would feel like I was " rocking " or swaying, like in a boat.

Esspecially bad in the recliner...I even thought my son was behind the chair

pushing on it! I don't know what causes it though.

a in WA

From: MusicScooter@...

To: chiari

Subject: question

Date: Tue, 15 Oct 2002 15:57:20 EDT

ok..I will describe this as best I can...

wondering does anyone else have this feeling when they lay down and...not

quite spinning but definately feels like movement in maybe a very slow

circular motion? Mine is always to the left (complimenting my walking these

days). Not like a make me nauseous thing but weird almost like a breeze

associated with the motion

....always left or I should say clockwise. can't figure out if it's just

when

I am trying to go to sleep when it's really quiet in the house...except for

the obnoxious ringing in my ears... I have a weird feeling it's always there

though just more noticable when I try to sleep and there's nothing

distracting me.

love light and peace

Tam

[Guest guest]

I'd be interested in replies to this...

My head has always tilted to one side as well...how odd!

in Ohio

ACMI - 10mm

No surgery

Question

Hello everyone,

I have a quick questions. More and more hear lately I have been

noticing that when I am sitting hear looking at the screen and

reading, that my head tilts, it just kinda falls to the right.

When I notice it I will try to straighten it back up but it just

feels like it wants to fall back over to the right. Could this be

chiari related to do you think it is just a bad habit. Also, I was

wondering, I have heard people talk about when they cough they get

pains. I don't get pains when I cough, but I do get very dizzy. I

am not talking about when you cough for an hour straight and get

light headed, I mean I will barely cough maybe twice and then I just

get very dizzy and tingly feeling in my hands. Does anyone else have

these problems. Sorry so long and thanks to all in advance.

Thank you,

Help section: http://www.yahoogroups.com/help/

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To Unsubscribe Yourself:

chiari-unsubscribe

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[Guest guest]

I've been doing the same thing for years!

My neurosurgeon is one of the few people who noticed it and asked about it.

This was before my surgery.

I told him I did it for years ....... he looked at the MRI's again but

didn't say anything else about it.

I'd be curious too.

the Other

Question

Hello everyone,

I have a quick questions. More and more hear lately I have been

noticing that when I am sitting hear looking at the screen and

reading, that my head tilts, it just kinda falls to the right.

When I notice it I will try to straighten it back up but it just

feels like it wants to fall back over to the right. Could this be

chiari related to do you think it is just a bad habit. Also, I was

wondering, I have heard people talk about when they cough they get

pains. I don't get pains when I cough, but I do get very dizzy. I

am not talking about when you cough for an hour straight and get

light headed, I mean I will barely cough maybe twice and then I just

get very dizzy and tingly feeling in my hands. Does anyone else have

these problems. Sorry so long and thanks to all in advance.

Thank you,

Help section: http://www.yahoogroups.com/help/

NOTE: NCC refers to posts with No Chiari Content

To Unsubscribe Yourself:

chiari-unsubscribe

WACMA Home: Http://www.wacma.com

WACMA Online Group: http://groups.yahoo.com/group/chiari/

[Guest guest]

Ditto. Even when I was younger, & I used to do a lot of singing, every vocal

teacher, choir director, etc, were constantly after me to hold my head up

straight. I still lean it to one side, all the time.

Wonder if there IS a common thread here w/ACM.

Carla in St. Louis

Question

Hello everyone,

I have a quick questions. More and more hear lately I have been

noticing that when I am sitting hear looking at the screen and

reading, that my head tilts, it just kinda falls to the right.

When I notice it I will try to straighten it back up but it just

feels like it wants to fall back over to the right. Could this be

chiari related to do you think it is just a bad habit. Also, I was

wondering, I have heard people talk about when they cough they get

pains. I don't get pains when I cough, but I do get very dizzy. I

am not talking about when you cough for an hour straight and get

light headed, I mean I will barely cough maybe twice and then I just

get very dizzy and tingly feeling in my hands. Does anyone else have

these problems. Sorry so long and thanks to all in advance.

Thank you,

Help section: http://www.yahoogroups.com/help/

NOTE: NCC refers to posts with No Chiari Content

To Unsubscribe Yourself:

chiari-unsubscribe

WACMA Home: Http://www.wacma.com

WACMA Online Group: http://groups.yahoo.com/group/chiari/

[Guest guest]

Hi Carla & Group:

Yes siree ! ... It is one of the known symptoms of Chiari.

Before I was diagnosed with Chiari, my hair cuts were never even on both sides

... Aww !! I would always be ragging on the hair dresser.

Because most of us that do tilt our head to one side, some of us don't realize

it. My mother always said. when I am reading .. say like the news paper.

She would notice I had my head tilted to one side. I didn't acknowledge I was

doing this.

My Mother thought it was a habit ... Oh yeah, as for my Hair Dresser . LOL I

had to apologize and explain. I did tell her I hated her hair cuts ... and

switched stylists. But, when I found out I had chiari ... I found out why

.....

The Hair Dresser would always be telling me to keep my head straight ... It was

very frustrating ..... But, now .. I have explained it to her and she just puts

my head in the right angle for me. As I don't realize when I do tilt my head.

Well, just thought I add my experience. You can find this symptom listed on a

web site. I can't remember which one. Maybe another group member can tell you.

Take care & God Bless !

Debra

Newfoundland & Labrador / Atlantic Canada

" A Minute Of Thought Is Worth More Than An Hour Of Talk "

Chiari I, 20 mm / No Surgery , " Yet "

Question

Hello everyone,

I have a quick questions. More and more hear lately I have been

noticing that when I am sitting hear looking at the screen and

reading, that my head tilts, it just kinda falls to the right.

When I notice it I will try to straighten it back up but it just

feels like it wants to fall back over to the right. Could this be

chiari related to do you think it is just a bad habit. Also, I was

wondering, I have heard people talk about when they cough they get

pains. I don't get pains when I cough, but I do get very dizzy. I

am not talking about when you cough for an hour straight and get

light headed, I mean I will barely cough maybe twice and then I just

get very dizzy and tingly feeling in my hands. Does anyone else have

these problems. Sorry so long and thanks to all in advance.

Thank you,

Help section: http://www.yahoogroups.com/help/

NOTE: NCC refers to posts with No Chiari Content

To Unsubscribe Yourself:

chiari-unsubscribe

WACMA Home: Http://www.wacma.com

WACMA Online Group: http://groups.yahoo.com/group/chiari/

[Guest guest]

The carpal tunnel could have actually been a part of the ACM. That was one of

the first problems that I had (except for the fact that I also have Spina

Bifida and thus I am paralyzed from the waste down). After the problems with

carpal tunnel syndrome, my left hand and then arm became gradually weaker.

That was caused specifically by a Syrinx.

Take CARE and God Bless!

from La Verne, CA

Syrinx from c1-t11, Spina Bifida, ACM Type II

Syringo-subarachnoid shunt with C6-C7 partial laminectomy (Nov. 1995)

VP Shunt replacement (Nov. 1996)

Posterior Fossa Decompression with laminectomy C1-C2, etc. (3/6/97)

VP Shunt replacement (June 5, 1998)

[Guest guest]

Cerebral infarct is a stroke.

-- Question

Hello All,

I do hope that this is a pain free sun shinning kind of day for all. I need

to have this translated. Does anyone remember Cerebral infarct? Is that

damage to an area of the brain?

Thanks Sheila

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chiari-unsubscribe

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[Guest guest]

My mom has had gamma knife on I think 5 different tumors during 2 different treatments and each time worked the same and both times every tumor treated stoped growing.

Olivia

[Guest guest]

Hello everyone...I am scheduled to see a doctor in NY next month regarding a procedure called Interventional Neuroradiology and Therapeutic Embolization My question is, has anyone had this done or has anyone have even heard of this for nf2?

thank you ................sixto (nyc)

[Guest guest]

i've never heard of the proceedure, which Dr. are you seeing?

the whole NF2 crew has NF2 or has family members who suffer from NF2...

[Guest guest]

We've been talking about this on the crew as of recent. My big q uestion

is what experience is there with this for NF patients where the nerves are

incapsulated within the tumors? Our interventional radiologist says it would

be very challenging for Anne because of where her abdominal tumor is and what

it connects to. However, we have not gotten a team of docs to really look

and bring their heads together on this. It is too new and there is too

little experience with it. OUr IR worked at Norris cancer institute and did

it quite a bit there but it was for cancer. Usually they prepare to remove

the tumor after embolizing because the purpose is to cut off the blood supply

which in normal surgery would cause one to bleed severely. That is all I

know for sure. Vicki

[Guest guest]

So, did anyone say they knew of this embollization? Vicki

[Guest guest]

nfaceo@...

This is a's address

Mikey

question

Anyone have a Tweedy's email address? ThanksBarbara lin

[Guest guest]

Don't be scared! Dr. Levin is wonderful and your type of TR has great

success rates. I thought the same thing, but , one of the group

moderators,

said that the ladies that have babies are so busy that they don't post as

often. While trying to conceive, lots of us come here for support. Plus, one

of

our girls on here just got pg after her first cycle post-TR!!! I hope this

helps! Good luck with Dr. Levin tomorrow!!

Vicki

TR 8-11-03

TTC

[Guest guest]

I was scared too, But I have a better shot getting pregnant with the

Tubal reversal than with my tubes tied!!! I am willing to take that

chance and leave it in gods hands.

-33

DH-32

DS-19

DS-15

DD-14

TL-90

TR-8/21/03

TTC

> I am new to this site I have some question that maybe you all can

answer I am

> 35 and have four kids ages 16,14,12,9. I had tubes done in sept.

94, I am

> considering haveing a tr done my first appointment is sept 9 with

dr L. All i

> have is the hulka clip. After reading some of the stories with

some of you guys

> having trouble getting pg.I am kinda scared.

>

>

>

[Guest guest]

Your chances should be great with the Hulka clip ligation. You'll

feel much better after talking with dr. Levin. Good luck to you!

Rhonda

> I am new to this site I have some question that maybe you all can

answer I am

> 35 and have four kids ages 16,14,12,9. I had tubes done in sept.

94, I am

> considering haveing a tr done my first appointment is sept 9 with

dr L. All i

> have is the hulka clip. After reading some of the stories with some

of you guys

> having trouble getting pg.I am kinda scared.

>

>

>

[Guest guest]

,

When we got a loan a feew yrs ago for about 6500, we have monthly

payments of 140 or less, its paid off now but I think thats what we

were paying.

Tracie

> Clear DayDose anoyone know what payments would be on a bank loan

or finance loan on $6200.00 ?

> We r thinking bout barrowing money towards our land for my TR but

not sure if we could afford the payments or not i was just wondering

if anyone knew what they would be or close to it .

> We were guessin maybe around $200-$250 each month .

> PATRICIA GRIDER

> HAVE A GOOD DAY

> )

>

>

>

>

[Guest guest]

wow i figured it would be more lol gose to show i havent barrowed money before

huh lol

Re: question

,

When we got a loan a feew yrs ago for about 6500, we have monthly

payments of 140 or less, its paid off now but I think thats what we

were paying.

Tracie

> Clear DayDose anoyone know what payments would be on a bank loan

or finance loan on $6200.00 ?

> We r thinking bout barrowing money towards our land for my TR but

not sure if we could afford the payments or not i was just wondering

if anyone knew what they would be or close to it .

> We were guessin maybe around $200-$250 each month .

> PATRICIA GRIDER

> HAVE A GOOD DAY

> )

>

>

>

>

[Guest guest]

Hi

I don't know what the payment would be on a bank loan but if you get

a mortgage on your land value you can deduct the interest on your

taxes and the payment could be lower. My DH and I are considering a

second mortgage on our house for that very reason. I think mortgage

rates are about as low as they are going to get considering we just

refinanced at 5% in July. You could also consider a cash out

refinance. If your current interest rate is 7% or more, even if you

add $6200 to the payoff amount of your loan it wouldn't change your

house payment and could possibly still lower it depending on how much

equity you have in the home. A lower house payment PLUS deductible

interest is a good combination and better than the 11-17% you would

pay for just a secured bank loan that isn't deductible. Just an

FYI...Good Luck!

Hazel

> Clear DayDose anoyone know what payments would be on a bank loan or

finance loan on $6200.00 ?

> We r thinking bout barrowing money towards our land for my TR but

not sure if we could afford the payments or not i was just wondering

if anyone knew what they would be or close to it .

> We were guessin maybe around $200-$250 each month .

> PATRICIA GRIDER

> HAVE A GOOD DAY

> )

>

>

>

>

[Guest guest]

I too am trying to find funding sources. While I was married to my

ex (I'll be nice) he messed up my credit really bad, so it is hard

for my hubby (the good one) and I to find a loan.

> > Clear DayDose anoyone know what payments would be on a bank loan

or

> finance loan on $6200.00 ?

> > We r thinking bout barrowing money towards our land for my TR but

> not sure if we could afford the payments or not i was just

wondering

> if anyone knew what they would be or close to it .

> > We were guessin maybe around $200-$250 each month .

> > PATRICIA GRIDER

> > HAVE A GOOD DAY

> > )

> >

> >

> >

> >

[Guest guest]

I have a loan through medicredit for 3000.00 and my payments are

134.00 for 3 years.

HTP

> Clear DayDose anoyone know what payments would be on a bank loan

or finance loan on $6200.00 ?

> We r thinking bout barrowing money towards our land for my TR but

not sure if we could afford the payments or not i was just wondering

if anyone knew what they would be or close to it .

> We were guessin maybe around $200-$250 each month .

> PATRICIA GRIDER

> HAVE A GOOD DAY

> )

>

>

>

>

[Guest guest]

Could be an implantation bleed. Usually comes around 8-10 dpo. I sure hope

AF doesn't find you.

Vicki

TR 8-11-03

TTC

[Guest guest]

Could be an implantation bleed. Usually comes around 8-10 dpo. I sure hope

AF doesn't find you.

Vicki

TR 8-11-03

TTC