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Sorry, I'm a few days behind on the list, but when anyone I haven't seen

in a long time asks me how I lost my weight and that I look terrific,

blah, blah, I have no problem telling them that I had weight loss

surgery. I was more embarrassed about old friends/acquaintances seeing

me at 378 pounds than I am about the surgery. Which by the way, I'm not

embarrassed one bit. My kids were young when I had it done, my daughter

was just 3 and my son was 6. He told me the other day he doesn't

remember me being that big. I'm grateful for that. They both know I had

the surgery, so I would never " fib " in front of them.

The only people I didn't tell what I was having done were my in-laws and

that's because I have more of a relationship with all of you than I do

with them and I felt it was none of their business. The best part of the

whole thing is that my father in-law knew I was in the hospital and then

sees me dropping all kinds of weight and thought I was sick. He was so

nice to me because he thought I was dying. He would call me and ask how

I was doing and just to " check up " on things. I knew what he was

thinking and was enjoying every minute of it. Seven months later when he

found out it was the weight loss surgery, everything went back to

normal. He hates me again. Seven months out of 14 years isn't so bad I

guess. LOL I'm almost three years out and my husband and I still laugh

about it.

Hope you resolve your issue with this.

Regards,

Regina Block

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  • 9 months later...
Guest guest

<< I was wondering if anyone knows about how many people are diagonsed with

ACM

every year? How many people are on this website who have ACM ? I know with

MRI

that it is detected more now than years ago, I was just curious.

>>

Debbie -- look at the preliminary results of the Duke Genetic reserach

article at ASAP ( http://asap.org ) to get those stats on how many are known to

have

sm - then the percentage that have SM due to chiari - and do the math to get

esitmates on those know to have chiari now . The study results are under the

" doc's corner " link.

The incidence of diagnosis has been getting greater as MRI's gained

mainstream use and recognition has grown at the same time . I've never heard

accurate

projections of total numbers per year from any of the other sources beyond the

Genetics study info . - it seems most complete of any source out there .

Remember too that chiari 1 is now known to have SEVERAL DIFFERENT underlying

causes in bone malformation problems ect - it's not as simple as they once

thought just a few years back . They are still learning more as the go --and

it's become apparant that more than just the degree of herniation needs to be

accessed to determine how severe someone's situation is - or whats best to do

surgically ect .

--it's becoming clear now that some FEW of us have mild looking hernaitions

but actually have severe compresion or flow problems --these folks are still

apt to be brushed off by the less experienced neurosurgeons too -and perhaps a

diagnosis missed or misdiagnosed - which confuses those stats a bit more .

Wacma has over 1000 active members - ASAP has over 2000 active members . It's

very clear the majority of those with either one or both arn't activally

involved -and may not know about either org . or group still . Some are also

doing

really well ( the majority actually of surgical patients when it's one of the

guru's doing surgery for example ) and have no need of ongoing info /suport or

assitance .

Hope that helps with those questions - they are good ones -but not clear

answers to most stats on us as a population . -- I've read it's more common that

ms for example - just that we were LATE in forming a nonprofit to help promote

awareness and research compared to better known neurologicial conditions where

diagnosis was possible pre MRI for example - so playing catch up in seeking

research funds , inclusion in medical school classes ect -- we are making big

strides in this last few years with that whole awarness effort for example

though .

One thing we can EACH do is seek to help educate the physicians we come in

contact with ( both good and " bad " ) by asking ASAP to send out physician info

packets to them providing the address . They will keep your name out of it if

asked - but it does help EVEN the edjit doctors to get the info - even if they

dismiss it /they may be more curious about learning having found there is a

medical nonprofit org . now with good accurate info they can seek later . It

sure can't hurt !

I've copied video's from ASAP doctor lectures and shared them with my local

doctors too --they really appreciated getting them -and getting " on the same

page " with understanding . My internist and neurologist were delighted - the

close to home neurosurgeon went on to develope a full blown chiari /sm treatment

intrest and has become a major specialist in this area after getting the

video's as a promting start . He said it was as helpful as getting to attend a

confrence on it ( he can't possibly go to all speciality confrences within

neurosurgery ) but the BEST aspect was that benfit to us --one more truly

current

neurosurgeon who cares and does his best to help many of us !

I've found the tapes really helpful too !

in Paradise

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Guest guest

<< I was wondering if anyone knows about how many people are diagonsed with

ACM

every year? How many people are on this website who have ACM ? I know with

MRI

that it is detected more now than years ago, I was just curious.

>>

Debbie -- look at the preliminary results of the Duke Genetic reserach

article at ASAP ( http://asap.org ) to get those stats on how many are known to

have

sm - then the percentage that have SM due to chiari - and do the math to get

esitmates on those know to have chiari now . The study results are under the

" doc's corner " link.

The incidence of diagnosis has been getting greater as MRI's gained

mainstream use and recognition has grown at the same time . I've never heard

accurate

projections of total numbers per year from any of the other sources beyond the

Genetics study info . - it seems most complete of any source out there .

Remember too that chiari 1 is now known to have SEVERAL DIFFERENT underlying

causes in bone malformation problems ect - it's not as simple as they once

thought just a few years back . They are still learning more as the go --and

it's become apparant that more than just the degree of herniation needs to be

accessed to determine how severe someone's situation is - or whats best to do

surgically ect .

--it's becoming clear now that some FEW of us have mild looking hernaitions

but actually have severe compresion or flow problems --these folks are still

apt to be brushed off by the less experienced neurosurgeons too -and perhaps a

diagnosis missed or misdiagnosed - which confuses those stats a bit more .

Wacma has over 1000 active members - ASAP has over 2000 active members . It's

very clear the majority of those with either one or both arn't activally

involved -and may not know about either org . or group still . Some are also

doing

really well ( the majority actually of surgical patients when it's one of the

guru's doing surgery for example ) and have no need of ongoing info /suport or

assitance .

Hope that helps with those questions - they are good ones -but not clear

answers to most stats on us as a population . -- I've read it's more common that

ms for example - just that we were LATE in forming a nonprofit to help promote

awareness and research compared to better known neurologicial conditions where

diagnosis was possible pre MRI for example - so playing catch up in seeking

research funds , inclusion in medical school classes ect -- we are making big

strides in this last few years with that whole awarness effort for example

though .

One thing we can EACH do is seek to help educate the physicians we come in

contact with ( both good and " bad " ) by asking ASAP to send out physician info

packets to them providing the address . They will keep your name out of it if

asked - but it does help EVEN the edjit doctors to get the info - even if they

dismiss it /they may be more curious about learning having found there is a

medical nonprofit org . now with good accurate info they can seek later . It

sure can't hurt !

I've copied video's from ASAP doctor lectures and shared them with my local

doctors too --they really appreciated getting them -and getting " on the same

page " with understanding . My internist and neurologist were delighted - the

close to home neurosurgeon went on to develope a full blown chiari /sm treatment

intrest and has become a major specialist in this area after getting the

video's as a promting start . He said it was as helpful as getting to attend a

confrence on it ( he can't possibly go to all speciality confrences within

neurosurgery ) but the BEST aspect was that benfit to us --one more truly

current

neurosurgeon who cares and does his best to help many of us !

I've found the tapes really helpful too !

in Paradise

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Guest guest

<< I was wondering if anyone knows about how many people are diagonsed with

ACM

every year? How many people are on this website who have ACM ? I know with

MRI

that it is detected more now than years ago, I was just curious.

>>

Debbie -- look at the preliminary results of the Duke Genetic reserach

article at ASAP ( http://asap.org ) to get those stats on how many are known to

have

sm - then the percentage that have SM due to chiari - and do the math to get

esitmates on those know to have chiari now . The study results are under the

" doc's corner " link.

The incidence of diagnosis has been getting greater as MRI's gained

mainstream use and recognition has grown at the same time . I've never heard

accurate

projections of total numbers per year from any of the other sources beyond the

Genetics study info . - it seems most complete of any source out there .

Remember too that chiari 1 is now known to have SEVERAL DIFFERENT underlying

causes in bone malformation problems ect - it's not as simple as they once

thought just a few years back . They are still learning more as the go --and

it's become apparant that more than just the degree of herniation needs to be

accessed to determine how severe someone's situation is - or whats best to do

surgically ect .

--it's becoming clear now that some FEW of us have mild looking hernaitions

but actually have severe compresion or flow problems --these folks are still

apt to be brushed off by the less experienced neurosurgeons too -and perhaps a

diagnosis missed or misdiagnosed - which confuses those stats a bit more .

Wacma has over 1000 active members - ASAP has over 2000 active members . It's

very clear the majority of those with either one or both arn't activally

involved -and may not know about either org . or group still . Some are also

doing

really well ( the majority actually of surgical patients when it's one of the

guru's doing surgery for example ) and have no need of ongoing info /suport or

assitance .

Hope that helps with those questions - they are good ones -but not clear

answers to most stats on us as a population . -- I've read it's more common that

ms for example - just that we were LATE in forming a nonprofit to help promote

awareness and research compared to better known neurologicial conditions where

diagnosis was possible pre MRI for example - so playing catch up in seeking

research funds , inclusion in medical school classes ect -- we are making big

strides in this last few years with that whole awarness effort for example

though .

One thing we can EACH do is seek to help educate the physicians we come in

contact with ( both good and " bad " ) by asking ASAP to send out physician info

packets to them providing the address . They will keep your name out of it if

asked - but it does help EVEN the edjit doctors to get the info - even if they

dismiss it /they may be more curious about learning having found there is a

medical nonprofit org . now with good accurate info they can seek later . It

sure can't hurt !

I've copied video's from ASAP doctor lectures and shared them with my local

doctors too --they really appreciated getting them -and getting " on the same

page " with understanding . My internist and neurologist were delighted - the

close to home neurosurgeon went on to develope a full blown chiari /sm treatment

intrest and has become a major specialist in this area after getting the

video's as a promting start . He said it was as helpful as getting to attend a

confrence on it ( he can't possibly go to all speciality confrences within

neurosurgery ) but the BEST aspect was that benfit to us --one more truly

current

neurosurgeon who cares and does his best to help many of us !

I've found the tapes really helpful too !

in Paradise

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Guest guest

> Wacma has over 1000 active members - ASAP has over 2000 active

members .

WACMA has over 1900 members just signed up in the online support

group. How many of them are actively doing volunteer work or

research inside or outside of the group ? We don't even know. We

don't count. If you know something we don't know... let us in on

it :)

Chip

www.wacma.com

p.s.

To the lady from ASAP who wants to know where came up her

numbers.. I don't know. You'll have to ask her :)

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> Wacma has over 1000 active members - ASAP has over 2000 active

members .

WACMA has over 1900 members just signed up in the online support

group. How many of them are actively doing volunteer work or

research inside or outside of the group ? We don't even know. We

don't count. If you know something we don't know... let us in on

it :)

Chip

www.wacma.com

p.s.

To the lady from ASAP who wants to know where came up her

numbers.. I don't know. You'll have to ask her :)

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Guest guest

>> I was wondering if anyone knows about how many people are

diagonsed with ACM every year? How many people are on this website

who have ACM ? I know with MRI that it is detected more now than

years ago, I was just curious.>>

We will never know (with much accuracy) how many people actually have

chiari because the only sure way to diagnose it is by MRI.. and the

majority of people in the US (and the rest of the world) haven't ever

had an MRI of their head. There are ways to come up with a " kinda-

sorta " number by looking at a large number of random MRI's and seeing

what percentage of those people have a chiari malformation..

...but you can't just grab 500 MRI's from your local MRI tech because

then there's the argument that if a person had an MRI of their head,

they must have had *some* reason for it ( symptoms ?) so they

wouldn't really be a " random " group, they'd be a group that probably

had more likelihood of having chiari than others because they had

some reason to have a head scan performed.

Some recent studies have been done, though none have claimed to

portray any level of accuracy. In older studies someone set out with

a pre-conceived idea and then tried to prove it. (sometimes it

happens to work out, but it's not a great way to conduct a scientific

study). The recent studies are well done yet very inconclusive.

In Marcy Speer's study

( view it online at http://www.asap4sm.com/DocsCorner.cfm)

everything was done very responsibly, and there is no conclusion. The

study states " Since no good estimate of the prevalence of Chiari type

1 malformation or other types of hindbrain-related abnormality are

available, the numbers utilized here could be inaccurate. " and " If

Regis Philbin were to ask, " Is this your final answer? " , we would

have to say emphatically 'no!. "

They way I read that is " We don't know " . I tried to come up with some

numbers a few years ago. Each time I did, someone pointed out very

serious and legitimate flaws in my data. I found that if you look at

the facts you have

to accept that we don't know how many people have a chiari

malformation and we don't know with any accuracy what percentage of

people may have a chiari malformation and it's not likely we will

anytime soon.

Chip

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Guest guest

>> I was wondering if anyone knows about how many people are

diagonsed with ACM every year? How many people are on this website

who have ACM ? I know with MRI that it is detected more now than

years ago, I was just curious.>>

We will never know (with much accuracy) how many people actually have

chiari because the only sure way to diagnose it is by MRI.. and the

majority of people in the US (and the rest of the world) haven't ever

had an MRI of their head. There are ways to come up with a " kinda-

sorta " number by looking at a large number of random MRI's and seeing

what percentage of those people have a chiari malformation..

...but you can't just grab 500 MRI's from your local MRI tech because

then there's the argument that if a person had an MRI of their head,

they must have had *some* reason for it ( symptoms ?) so they

wouldn't really be a " random " group, they'd be a group that probably

had more likelihood of having chiari than others because they had

some reason to have a head scan performed.

Some recent studies have been done, though none have claimed to

portray any level of accuracy. In older studies someone set out with

a pre-conceived idea and then tried to prove it. (sometimes it

happens to work out, but it's not a great way to conduct a scientific

study). The recent studies are well done yet very inconclusive.

In Marcy Speer's study

( view it online at http://www.asap4sm.com/DocsCorner.cfm)

everything was done very responsibly, and there is no conclusion. The

study states " Since no good estimate of the prevalence of Chiari type

1 malformation or other types of hindbrain-related abnormality are

available, the numbers utilized here could be inaccurate. " and " If

Regis Philbin were to ask, " Is this your final answer? " , we would

have to say emphatically 'no!. "

They way I read that is " We don't know " . I tried to come up with some

numbers a few years ago. Each time I did, someone pointed out very

serious and legitimate flaws in my data. I found that if you look at

the facts you have

to accept that we don't know how many people have a chiari

malformation and we don't know with any accuracy what percentage of

people may have a chiari malformation and it's not likely we will

anytime soon.

Chip

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Guest guest

>> I was wondering if anyone knows about how many people are

diagonsed with ACM every year? How many people are on this website

who have ACM ? I know with MRI that it is detected more now than

years ago, I was just curious.>>

We will never know (with much accuracy) how many people actually have

chiari because the only sure way to diagnose it is by MRI.. and the

majority of people in the US (and the rest of the world) haven't ever

had an MRI of their head. There are ways to come up with a " kinda-

sorta " number by looking at a large number of random MRI's and seeing

what percentage of those people have a chiari malformation..

...but you can't just grab 500 MRI's from your local MRI tech because

then there's the argument that if a person had an MRI of their head,

they must have had *some* reason for it ( symptoms ?) so they

wouldn't really be a " random " group, they'd be a group that probably

had more likelihood of having chiari than others because they had

some reason to have a head scan performed.

Some recent studies have been done, though none have claimed to

portray any level of accuracy. In older studies someone set out with

a pre-conceived idea and then tried to prove it. (sometimes it

happens to work out, but it's not a great way to conduct a scientific

study). The recent studies are well done yet very inconclusive.

In Marcy Speer's study

( view it online at http://www.asap4sm.com/DocsCorner.cfm)

everything was done very responsibly, and there is no conclusion. The

study states " Since no good estimate of the prevalence of Chiari type

1 malformation or other types of hindbrain-related abnormality are

available, the numbers utilized here could be inaccurate. " and " If

Regis Philbin were to ask, " Is this your final answer? " , we would

have to say emphatically 'no!. "

They way I read that is " We don't know " . I tried to come up with some

numbers a few years ago. Each time I did, someone pointed out very

serious and legitimate flaws in my data. I found that if you look at

the facts you have

to accept that we don't know how many people have a chiari

malformation and we don't know with any accuracy what percentage of

people may have a chiari malformation and it's not likely we will

anytime soon.

Chip

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  • 2 months later...

Hi all,

I suscribed a month ago or so and this is just my second post. I am

currently weighing 121 pounds and want to lost 11 more. My diet has

been working relentlessly since May (originally 145) and I feel well,

but I have a couple of questions.

Is there a substancial difference in weighing oneself at different

hours of the day? I mean I have seen a wide difference in close days

and it just doesn't make too much sense.

Other question is the next, I observe I am going so much slower in my

losing weight now that I am closer to the goal. Is it normal that it

gets more and more difficult or am I slacking too much in the diet? I

find harder and harder to avoid eating what I like in big quantitites.

Thanks and see you around! :)

Karina

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Sorry.... didn't you say you were 5'3" and 121 pounds?

I must have misread you, otherwise you're gainig weight

too fast! 20 pounds in one night! HELP - We're losing Joya! ;-)

(Actually reminds me of my dream last night, but we don't

have to go into that.... It also included a never-ending pile

of laundry. Huh. Think I'm stressing about housecleaning?)

Oh, and by the way, 53 is NOT an old lady! I'm 44 and

I intend to be in the bast shape of my life in the next decade!!

*hugs*

Elissa

Re: curiousWell, first of all I don't have a WW leader becuz in HOnduras we don't haveWW which is why I joined onlined.I am 5'3 small bond...pehaps medium...I have after pictures of me on atkinsat 120 and I look on the verge of Ethiopian...that is 7 pounds MORE thanwhat WW recommends.Joya

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Oops! I apologize. I think I mixed the two of you up! (Clearly

early signs of senility ;-)... Yeah, I think I was confusing Joya's

5' 3" (I thought she said) with your 121 pounds, and thinking that

clearly, as a composite of two people, your weight was at the

very low end of the guideline .

If you go for your 110 goal, it's right within the healthy range,

and you are ultimately the judge of how you want your body

to be for you.

Personally, I find most models far too frail looking for my

(personal) taste. My family has larger bone structures (I've

always had wide shoulders, for instance, and even as a 4 year

old little twig, my grandpa called me his little football player ;-).

We're pretty muscle-ly, too. I'm gonna try for the top end of

my range first, and probably settle somewhere above the middle.

On the other hand, my close friend sounds to be about your height,

and her 105 pounds works really well for her. She's strong as hell 8-)

Doen't look frail at all. Isn't it interesting all the variety we get? ;-)

-Elissa

Re: curious>> If you find yourself slipping a lot, that's going to slow your progress.>> By the way, 121 sounds like a healthy weight. Of course, I don't> know you, so I don't know your height and your bone structure, etc.> Since 110 pounds is your goal I can only assume that it is a perfect> weight for you 8-)>> However, if you are a healthy weight for your height and bone> structure, You might be having trouble sticking with less food> because your body is actually hungry. Can you discern whether> it's actual hunger or emotional hunger or just food habits?>> Great work on the weight you've already lost! 24 pounds is> excellent!>> -Elissa

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