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Welcome, Freda! Sorry about your diagnoses and your pain.

We do have a chat feature that, for whatever mysterious reasons, isn't

used by our group much. If you want to schedule a chat or a regular time

for chats, please feel free to do so. Perhaps others will join you.

[ ] thanks for the welcome

>

> Hello I'm new here.I'm Freda, Just wanted to say hi and to wish

> you all a happy Thanksgiving. I've been looking for a group or two

> join and hope to be able get in on chats. You all have chat's on

> what nights? I would like to talk to others i have fibro, osteo, and

> ra. Along with other health problems to. I'm 42 yrs. old and the

> pain does get old quick.I've had these since diag. in 1995. If

> anyone would like to e-mail me that'd be ok. Take care and thanks

> for having me here. Freda in tennessee

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Hi Freda,

Welcome to the group! This group and the other one I'm in (for

Dercum's Disease) have truly been life-savers for me. It's been a

really rocky road the past year trying to find out what was wrong

with me, but we have finally settled on osteo, fibro, and the very

rare Dercum's Disease. The self-limiting factors of all those have

turned me in a different direction and I'm learning new things all

the time.

Happy Thanksgiving to you, too!

Judi in Indiana

>

> Hello I'm new here.I'm Freda, Just wanted to say hi and to wish

> you all a happy Thanksgiving. I've been looking for a group or two

> join and hope to be able get in on chats. You all have chat's on

> what nights? I would like to talk to others i have fibro, osteo,

and

> ra. Along with other health problems to. I'm 42 yrs. old and the

> pain does get old quick.I've had these since diag. in 1995. If

> anyone would like to e-mail me that'd be ok. Take care and thanks

> for having me here. Freda in tennessee

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  • 1 year later...

Let me say welcome to you also ..........sorry

I have not posted much lately but still try to read

them all.............we are glad to have you here and

I know you will find this the most informative place

and warm and compassionate individuals that you could

not find anywhere else..........we all care and

understand because we have been there............

Look forward to hearing more about you.

Gentle hugs from Pat in So Ore.

--- <yooperz@...> wrote:

> Just wanted to say thank you for the welcome to the

> group and for the

> advice. I will see a rheumatologist soon, will see

> what happens this

> week with the immunology blood work. I believe what

> I learn here in

> this group will help me to get doctors to take me

> more seriously. I

> am changing my primary care physician no matter what

> - I get

> occassional excruciating, debilitating headaches and

> have mentioned

> that the muscle relaxants and naprosyn the doctors

> tell me to take do

> not work. I can't believe that they have never had

> me try anything

> else. It is inhumane ot allow someone to feel such

> pain, either from

> the headaches or the other episodes I've had, unless

> there is a

> medical reason they can't take stronger pain meds.

> I also told one of

> the doctors at this clinic that my allergy

> medication, Allegra, wasn't

> working so well and Zirtec used to work better for

> me. He refused to

> give me a script for Zirtec and gave no reason. I

> was confused and

> dumbfounded and didn't ask him why he was reacting

> as he was.

>

> Bottom line is, I need to be a lot more aggressive

> about my healthcare

> than I have been. I liked seeing this group of

> doctors because they

> are osteopaths and they can do adjustments on my

> neck and back as

> well, but forget it - I can just see a chiropractor

> for the same

> treatments.

>

> Thanks again! Look forward to learning more as I

> lurk a bit here,

> will post questions as I have them. I think God led

> me here as an

> answer to my prayers where I asked Him, " now what?

> Where do I get

> information based on human experience (vs. a medical

> journal)?

>

> Elmblad

> Your Guide to Financial Software

> http://finacialsoft.about.com

>

>

>

>

>

>

>

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

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  • 4 months later...

Hi :

I have Fibro too and you might ask your doctor about

Lyrica. It is a new drug that is helping quite a lot

of people with Fibro. I started it two days ago, but

I am in a flare so don't know how much good it is

doing yet. It is supposed to help with energy as well

as the nerve pain. I could certainly use more energy!

Kathe in CA

--- 's Email <sarahtait@...> wrote:

> Thanks for the warm welcome. It is so strange how

> many people have had or

> know someone who has had a baby that required

> intensive care. It is scary

> when you think about what can go wrong and there is

> so much drug use these

> days that only makes it worse.

> I pray every day that I can continue to work and

> know that my time is

> limited as my knuckles are already somewhat swollen

> and my thumb joints hurt

> sometimes severely.

> I am on plaqueril and am weaning off prednisone but

> having trouble doing

> that. It really helped my knees and hands. I worry

> about decreasing my

> immune system but so far so good. On the lower dose

> of prednisone my

> stiffness is back and some aches but not the severe

> case I had. With

> fibromyalgia on top of this I have to take pain meds

> most of the time-but

> not heavy ones for which I am thnakful-just ultram

> and darvocet for the most

> part.

> I look forward to getting to know everyone here on

> the list and amd glad to

> find people that have the same troubles as me.

> Hugs,

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

Kathe in CA

__________________________________________

DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.

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Hey Kathy, I know this may sound crazy to some but as the past 4

yrs has gone by and the anapylaxis has lessened could be due to the

surgeon messing around all the breakdown in surrounding tissue

around my upper stomach. If this foam/texture coating distributed

around that area wouldn't it react? Something to think about.

Do you know much about Fundoplication procedure for acid reflux?

You have a spincter muscle that when working properly

will close when not swallowing food/liquids and keeps acid/fluids,

etc. from basicly flowing up. They take upper stomach and with mine

they did a full wrap around the back of stomach and sutured it place

in front or the side. Some only need a half wrap. Now they did not

give me of course much explanation to the severity of a surgery it

was.

But thru internet I've learned more about it. I have been one of the

fortunate patients that the procedure actually benefited from it.

But I wonder if it stirred up silicone to trigger the conditions

I've never had before.

This makes me think of another interesting thing. This

last yr. I had my routine upper scope to check things out, and the

gastroenolgist said he did a culture from the stomach and it came

back with severe bacteria, and gave me so much antibotic it would

have killed a horse, I've never had that much before, it was 3000 mg

of Keflex a day for 10 days. I found that kinda strange. The more

I've read about implant toxicity the more things are going hand in

hand on what triggered these conditions he last 7 yrs. I appreciate

the feedback all you sisters have given me. I has helped me to

remember conditions I've developed that may be important factors

when I see Dr. Kolb. Thanks. a

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Hey, everyone. I appreciate all the input, suggestions and web sites.

I have more clarity on all my ailments now than before I came to this

site. I had research the last year and half reading text book

symptoms. It is awesome to finally have others that has walked in my

shoes and is in same stage of fixing to explant. And what other topics

I'm reading on this forum of what some are going through just

overwhelms me. I lift all you in prayer. God brought me your way and

I'm humbled. My Fibromyalgia/Chronic Fatigue and pain in my chest is

extreme today. Counting down to my consultaion next Fri. with Dr Kolb.

Already Love You all,

a

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a,

I'm so glad to hear you're seeing Dr. Kolb so soon! .

.. . You're going to love her! She understands what

you've been going through!

I'm not going to lie to you . . . you probably have a

long road ahead of you. It won't be as easy as it is

for some of the women who had other types of implants

for a short time.

However, we've seen so many women who have been sick

get their life back! . . . If I had to guess, I'd say

that between Lynda, Lea, Patty, Kathy, Ilena and I,

we've seen well over 10,000 women pass through. If

they can do it, you can too!

It's been my observation that women who take

responsiblity for getting well - rather than place the

responsiblity on doctors and medications, do much

better than those who stick to conventional medicine

doctrine. I get the feeling you have already taken

responsiblity!

The best thing you can do for yourself now is to drink

plenty of pure water, eat healthy, and try to avoid

stress and anger. Focus on giving your body what it

needs to repair itself and you'll be on your way!

Hugs and prayers,

Rogene

--- bluejaybliss <bluejaybliss@...> wrote:

> Hey, everyone. I appreciate all the input,

> suggestions and web sites.

> I have more clarity on all my ailments now than

> before I came to this

> site. I had research the last year and half reading

> text book

> symptoms. It is awesome to finally have others that

> has walked in my

> shoes and is in same stage of fixing to explant. And

> what other topics

> I'm reading on this forum of what some are going

> through just

> overwhelms me. I lift all you in prayer. God

> brought me your way and

> I'm humbled. My Fibromyalgia/Chronic Fatigue and

> pain in my chest is

> extreme today. Counting down to my consultaion next

> Fri. with Dr Kolb.

> Already Love You all,

> a

>

>

>

>

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Hey all, I'm fixing to read all posted since yesterday, but, I am

fixing to buy some kind of affordable water purifyier. My

chiropractor has said its best not to use bottled water cause the

container has a possibility of leaking plastic(and we all thought it

was safe to). He suggest your 5 gallon refillable fountain type. We

don't have the extra for that luxury. He also said a hard plastic

container, glass-cup-storage is safe. Does anyone know of a good one?

I can't use the one that filter at faucet in kitchen. I have a pull

out sprayer there. I guess the kind in a pitcher on countertop I'm

looking for? Thanks a

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a,

Would the pitcher with the charcol filter work? . . .

My mother used one of those. The water tasted great.

She kept it in the refrigerator and added water each

time she poured a glass.

Rogene

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That's an interesting point. When I went to BA consults, one doc said that

the silicone covering on a saline is made of silicone, the same as what is

used in water bottles!

Kenda

> Hey all, I'm fixing to read all posted since yesterday, but, I am

> fixing to buy some kind of affordable water purifyier. My

> chiropractor has said its best not to use bottled water cause the

> container has a possibility of leaking plastic(and we all thought it

> was safe to). He suggest your 5 gallon refillable fountain type. We

> don't have the extra for that luxury. He also said a hard plastic

> container, glass-cup-storage is safe. Does anyone know of a good one?

> I can't use the one that filter at faucet in kitchen. I have a pull

> out sprayer there. I guess the kind in a pitcher on countertop I'm

> looking for? Thanks a

>

>

>

>

>

>

> Opinions expressed are NOT meant to take the place of advice given by licensed

> health care professionals. Consult your physician or licensed health care

> professional before commencing any medical treatment.

>

> " Do not let either the medical authorities or the politicians mislead you.

> Find out what the facts are, and make your own decisions about how to live a

> happy life and how to work for a better world. " - Linus ing, two-time

> Nobel Prize Winner (1954, Chemistry; 1963, Peace)

>

> See our photos website! Enter " implants " for access at this link:

> http://.shutterfly.com/action/

>

>

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Kenda, everything seems to come in plastic containers these days -

sauces, juices, etc. I wonder if that's the same type of container

as bottled water?

Sis

--- In , Kenda Skaggs <skaggs@c...>

wrote:

>

> That's an interesting point. When I went to BA consults, one doc

said that

> the silicone covering on a saline is made of silicone, the same as

what is

> used in water bottles!

>

> Kenda

>

> > Hey all, I'm fixing to read all posted since yesterday, but, I am

> > fixing to buy some kind of affordable water purifyier. My

> > chiropractor has said its best not to use bottled water cause the

> > container has a possibility of leaking plastic(and we all

thought it

> > was safe to). He suggest your 5 gallon refillable fountain

type. We

> > don't have the extra for that luxury. He also said a hard plastic

> > container, glass-cup-storage is safe. Does anyone know of a good

one?

> > I can't use the one that filter at faucet in kitchen. I have a

pull

> > out sprayer there. I guess the kind in a pitcher on countertop

I'm

> > looking for? Thanks a

> >

> >

> >

> >

> >

> >

> > Opinions expressed are NOT meant to take the place of advice

given by licensed

> > health care professionals. Consult your physician or licensed

health care

> > professional before commencing any medical treatment.

> >

> > " Do not let either the medical authorities or the politicians

mislead you.

> > Find out what the facts are, and make your own decisions about

how to live a

> > happy life and how to work for a better world. " - Linus ing,

two-time

> > Nobel Prize Winner (1954, Chemistry; 1963, Peace)

> >

> > See our photos website! Enter " implants " for access at this link:

> > http://.shutterfly.com/action/

> >

> >

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Kenda,

That doc was full of it! . . . Water bottles are more

related to petrochemical products (plastics) than

silicone!

Rogene

--- Kenda Skaggs <skaggs@...> wrote:

> That's an interesting point. When I went to BA

> consults, one doc said that

> the silicone covering on a saline is made of

> silicone, the same as what is

> used in water bottles!

>

> Kenda

>

> >

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Hi a,

I am so glad you found us--that God brought us together! That is

why our group was formed, because we do need each other and it just

feels so good to know we don't suffer alone.

I remember the lonliness I felt when I got sick, and how nobody had

a clue as to what was wrong with me. I felt like a social paraiah,

and like I was drowning in a sea of confusion. How wonderful it

felt to make connections with other women who went through what I

was! Nobody who has gone through implant illness has to go through

it alone anymore.

So glad you are on your way to a consult and looking toward explant

to get your health back on track. Dr. KOlb will help you--she knows

all about this illness!

God bless,

Pattty

>

> Hey, everyone. I appreciate all the input, suggestions and web

sites.

> I have more clarity on all my ailments now than before I came to

this

> site. I had research the last year and half reading text book

> symptoms. It is awesome to finally have others that has walked in

my

> shoes and is in same stage of fixing to explant. And what other

topics

> I'm reading on this forum of what some are going through just

> overwhelms me. I lift all you in prayer. God brought me your way

and

> I'm humbled. My Fibromyalgia/Chronic Fatigue and pain in my chest

is

> extreme today. Counting down to my consultaion next Fri. with Dr

Kolb.

> Already Love You all,

> a

>

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Me too. Glass is it. I cook in Visions cookware too, (which is no

longer available. Buy what you can on Ebay!)

Patty

> >>

> >> That's an interesting point. When I went to BA consults, one

doc

> > said that

> >> the silicone covering on a saline is made of silicone, the same

as

> > what is

> >> used in water bottles!

> >>

> >> Kenda

> >>

> >>> Hey all, I'm fixing to read all posted since yesterday, but, I

am

> >>> fixing to buy some kind of affordable water purifyier. My

> >>> chiropractor has said its best not to use bottled water cause

the

> >>> container has a possibility of leaking plastic(and we all

> > thought it

> >>> was safe to). He suggest your 5 gallon refillable fountain

> > type. We

> >>> don't have the extra for that luxury. He also said a hard

plastic

> >>> container, glass-cup-storage is safe. Does anyone know of a

good

> > one?

> >>> I can't use the one that filter at faucet in kitchen. I have a

> > pull

> >>> out sprayer there. I guess the kind in a pitcher on countertop

> > I'm

> >>> looking for? Thanks a

> >>>

> >>>

> >>>

> >>>

> >>>

> >>>

> >>> Opinions expressed are NOT meant to take the place of advice

> > given by licensed

> >>> health care professionals. Consult your physician or licensed

> > health care

> >>> professional before commencing any medical treatment.

> >>>

> >>> " Do not let either the medical authorities or the politicians

> > mislead you.

> >>> Find out what the facts are, and make your own decisions about

> > how to live a

> >>> happy life and how to work for a better world. " - Linus

ing,

> > two-time

> >>> Nobel Prize Winner (1954, Chemistry; 1963, Peace)

> >>>

> >>> See our photos website! Enter " implants " for access at this

link:

> >>> http://.shutterfly.com/action/

> >>>

> >>>

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  • 2 months later...
Guest guest

Thank you for the welcome! I've had 7 surgeries, the first at 6 months and the last at 16. I don't think there's anything else they can do for my case at this time. I did the whole head tilting thing and actually I think on occasion I still do. I didn't have the ability to open my eyes at all untill the first surgery. I don't really know too much about the condition outside of my own experience. I was quite shocked to know that some of the messages I've read talked about surgeries being performed much later than mine and I wondered how that worked. Apparently there are varied degrees of the condition. Through my surgery I was given the ability to hold my eyes open with my forhead( at least that's how I understood it) I'm legally blind as well and am very interested to know if the two go hand and hand or if I was the lucky winner of that gift. lol! I also recently read a study linking female infertility to blepharophimosis and worry I also have that to deal with. I 'd love to hear more about everybodies personal experiences and share my own. It's great not to feel so alone in this after so long, but sad to find out so many other people have to deal with it as well. there are worse things though. I try to look at it as I was hand picked for the job and someone else will benefit from my experience.............it's either that are spend a lifetime being pretty bitter! I also have the gift of gab, lol! I'm going to try and check some of the pictures out now and then see if I can't send one of my own.

Thanks again for the welcome! I look forward to rambling on to anyone who'll listen and listen to anyone who wants to ramble!

Jackie

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Guest guest

Hi Jackie

My name is Bryony and I am from the UK.

I had all my surgery when I was very

small. I don’t remember any of it thankfully. Before my operations my

eyes were tiny and people couldn’t tell if I was awake of asleep. They

are not too bad now; people assume I am oriental in some way (with blonde hair

and blue eyes – WEIRD).

I was told that it was unlikely that I

would have children but I fell pregnant by surprise when I was 23. I am now 27

and have pre-ovarian failure which is unfortunately linked with Bleph so am

unable to have any more.

I have added my picture to the site, there

is one of me and my dad who also has Bleph.

Right best do the breakfast round.

Take care

B

From:

blepharophimosis

[mailto:blepharophimosis ]

On Behalf Of grandphant

Sent: 29 March 2006 00:40

blepharophimosis

Subject: blepharophimosis thanks

for the welcome

Thank

you for the welcome! I've had 7 surgeries, the first at 6 months and the last

at 16. I don't think there's anything else they can do for my case at this

time. I did the whole head tilting thing and actually I think on occasion I

still do. I didn't have the ability to open my eyes at all untill the first

surgery. I don't really know too much about the condition outside of my own

experience. I was quite shocked to know that some of the messages I've read

talked about surgeries being performed much later than mine and I wondered how

that worked. Apparently there are varied degrees of the condition. Through my

surgery I was given the ability to hold my eyes open with my forhead( at least

that's how I understood it) I'm legally blind as well and am very interested to

know if the two go hand and hand or if I was the lucky winner of that gift.

lol! I also recently read a study linking female infertility to

blepharophimosis and worry I also have that to deal with. I 'd love to

hear more about everybodies personal experiences and share my own. It's great

not to feel so alone in this after so long, but sad to find out so many other

people have to deal with it as well. there are worse things though. I try to

look at it as I was hand picked for the job and someone else will benefit from

my experience.............it's either that are spend a lifetime being pretty

bitter! I also have the gift of gab, lol! I'm going to try and check some

of the pictures out now and then see if I can't send one of my own.

Thanks again for the welcome! I look forward to rambling on to

anyone who'll listen and listen to anyone who wants to ramble!

Jackie

--

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Checked by AVG Free Edition.

Version: 7.1.385 / Virus Database: 268.3.3/295 - Release Date: 28/03/2006

--

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Checked by AVG Free Edition.

Version: 7.1.385 / Virus Database: 268.3.3/295 - Release Date: 28/03/2006

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Guest guest

Welcome Jackie and Bryony too as unsure if i've welcomed Bryony.

Welcome to everyone new.

I am 29 in May and have many of the same feelings as you Jackie and

only found out about the connection with BPES and POF in November

2005 and found this site a week before that, what is more unusual is

that until I found this site I didn't even know the correct name for

BPES. I am currently having blood tests to establish whether I may

have POF so anything you need to know just ask. I am very worried

about not being able to have children as I didn't know about any

connection with POF and just presumed I could wait a few more

years. Enjoy the site sarah (UK)

>

>

> [:)] Thank you for the welcome! I've had 7 surgeries, the first

at 6

> months and the last at 16. I don't think there's anything else

they can

> do for my case at this time. I did the whole head tilting thing and

> actually I think on occasion I still do. I didn't have the ability

to

> open my eyes at all untill the first surgery. I don't really know

too

> much about the condition outside of my own experience. I was quite

> shocked to know that some of the messages I've read talked about

> surgeries being performed much later than mine and I wondered how

that

> worked. Apparently there are varied degrees of the condition.

Through my

> surgery I was given the ability to hold my eyes open with my

forhead( at

> least that's how I understood it) I'm legally blind as well and am

very

> interested to know if the two go hand and hand or if I was the

lucky

> winner of that gift. lol! I also recently read a study linking

female

> infertility to blepharophimosis and worry I also have that to deal

with.

> I 'd love to hear more about everybodies personal experiences and

share

> my own. It's great not to feel so alone in this after so long, but

sad

> to find out so many other people have to deal with it as well.

there are

> worse things though. I try to look at it as I was hand picked for

the

> job and someone else will benefit from my

experience.............it's

> either that are spend a lifetime being pretty bitter! I also have

the

> gift of gab, lol! I'm going to try and check some of the pictures

out

> now and then see if I can't send one of my own.

>

> Thanks again for the welcome! I look forward to rambling on to

anyone

> who'll listen and listen to anyone who wants to ramble!

>

> Jackie

>

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Guest guest

Hi

I was diagnosed with POF 2 weeks ago and

have been through all of the tests. It didn’t make sense to me at the

time as I couldn’t take it all in, but I have since had everything clarified.

I have been blessed to have had a “surprise”

child when I was 24. I am now 27.

This is all really personal stuff so if anyone

wants to mail me direct to discuss this please do but I don’t feel ready

to put it all out there just yet on the web.

Fingers crossed.

B

x

From:

blepharophimosis

[mailto:blepharophimosis ]

On Behalf Of birrellnadine

Sent: 29 March 2006 18:53

blepharophimosis

Subject: blepharophimosis Re:

thanks for the welcome

Welcome Jackie and Bryony too

as unsure if i've welcomed Bryony.

Welcome to everyone new.

I am 29 in May and have many of the same feelings

as you Jackie and

only found out about the connection with BPES and

POF in November

2005 and found this site a week before that, what

is more unusual is

that until I found this site I didn't even know

the correct name for

BPES. I am currently having blood tests to

establish whether I may

have POF so anything you need to know just ask.

I am very worried

about not being able to have children as I didn't

know about any

connection with POF and just presumed I could wait

a few more

years. Enjoy the site sarah (UK)

>

>

> [:)] Thank you for the

welcome! I've had 7 surgeries, the first

at 6

> months and the last at 16. I don't think

there's anything else

they can

> do for my case at this time. I did the whole

head tilting thing and

> actually I think on occasion I still do. I

didn't have the ability

to

> open my eyes at all untill the first surgery.

I don't really know

too

> much about the condition outside of my own

experience. I was quite

> shocked to know that some of the messages

I've read talked about

> surgeries being performed much later than

mine and I wondered how

that

> worked. Apparently there are varied degrees

of the condition.

Through my

> surgery I was given the ability to hold my

eyes open with my

forhead( at

> least that's how I understood it) I'm legally

blind as well and am

very

> interested to know if the two go hand and

hand or if I was the

lucky

> winner of that gift. lol! I also recently

read a study linking

female

> infertility to blepharophimosis and worry I

also have that to deal

with.

> I 'd love to hear more about everybodies

personal experiences and

share

> my own. It's great not to feel so alone in

this after so long, but

sad

> to find out so many other people have to deal

with it as well.

there are

> worse things though. I try to look at it as I

was hand picked for

the

> job and someone else will benefit from my

experience.............it's

> either that are spend a lifetime being pretty

bitter! I also have

the

> gift of gab, lol! I'm going to try and check

some of the pictures

out

> now and then see if I can't send one of my

own.

>

> Thanks again for the welcome! I look forward

to rambling on to

anyone

> who'll listen and listen to anyone who wants

to ramble!

>

>

Jackie

>

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  • 2 years later...

Hi Keri,

It's possible that your silicone implants have silently ruptured--do

you still have the same ones? That's an awful long time to have the

same implants, if so.

Silent ruptures amongst women who have had implants for an extended

period of time are very common. But it will take a very good surgeon

to clean you out expertly if there is a risk of spilling silicone into

your body upon explant. Hopefully if there is loose silicone, it is

contained within the capsule.

So, what are your thoughts on your situation at this point?

It sounds like you are doing what you can...eating right, exercising

(I am glad you can still do this!), laughing when you can and enjoying

life with your kids. I hope it continues for you, and that you can

have the time you need to prepare for the possibility of explant.

Here is what I feel is true about having implants:

1) They do not in any way, shape or form contribute toward GOOD HEALTH

2) If a woman is showing signs of illness, it is better to get them

out rather than to wait and see what happens, because it is almost a

given that what happens is not good.

3) The implants will have to be dealt with at some point in time

anyway. They do not last a lifetime and do not go with you to the

grave intact, unless you die unexpectedly. Implants need to be either

replaced or removed at some point in your life, and the current view

is that this should happen every 7 years. (A nice annuity for those

plastic surgeons.)

4) The safest future you can have is a future without breast implants.

If you are seriously considering removing your implants, we can help

direct you to those surgeons who do a proper explant. I'm sure if

you've been reading that you are aware that many doctors don't take

the need for removal of scar tissue seriously, and this can make a

difference between healing and not healing.

Take care and stay close!

Patty

>

> Thanks for the welcome - I 've been reading a bit here and there from

> this website looking for info that might be helpful - and you all are

> a wealth of info! I had a double mast when I was 22 - and ended up

> with good ole Dow Corning silicone implants. That was the thing back

> in the early 80's. Anyway, they completely encapsulated shortly

> after the surguries - not a very pretty look, but I had originally

> been a 30AA, so the doc used the smallest implants he had. And I'm

> assuming that since he took all the breast tissue - he wanted to put

> something back. Anyway, apart from the scar tissue and some loss of

> physical strength, I didn't start to notice much until five or six

> years ago, when I noticed some odd little lumpy areas. I wasn't in

> the position to do much at that time - I was trying to raise 3

> children in the midst of a very stormy relationship. A few years

> ago, I noticed that my fingers would go numb and cold and they took

> quite a while before they returned to normal. Since I live in a

> relatively cold area, I just assumed I had managed to get frostbitten

> once or twice. Turns out, I've developed Reynaud's. I started

> seriously looking into into explant surgury then, and everything I've

> uncovered so far pretty much scares the crap out of me. I didn't

> know that the failure rate was so high on silicone and even though

> there are some excellent docs in Wyoming, this sort of thing simply

> isn't something most of them deal with. I suppose that's all about

> me in a nutshell. I try to stay as healthy as I can - eat right,

> excercise, laugh at the stupidest things, and enjoy hanging with my

> kids. I sound like a Geritol commercial. Anyway, again thanks for

> all the info and warmest thoughts to all the folks on this site.

>

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Thoughts on my situation at this point....back in 1984 when the surgeries were done, my doc at the time was considered a really good one. But I wasn't given any information on the longevity of implants. It could be that it simply wasn't known at the time. I moved to Wyoming several years later - just after my 2 year visit with the doc - threw all my stuff on a Greyhound bus and moved west. My last visit to a doctor was about three years ago, when I decided I might want to get a checkup. I went to a local clinic here and they insisted on a mammogram since I was over the age of 40. I had heard prior to that that there were other tests that were more appropriate for women with implants and mentioned that to the person dealing with me. She was unconcerned and went

ahead with the mammogram.

I was blessed with children fairly late in life - my last, a daughter, was born when I was almost 40 - and my kids all know about the stuff I went through when I was in my 20's. I've been trying to educate my daughter, who is only 8, that she will probably have to begin BSE's as soon as puberty hits - somewhere in the next 5 years or so. Spooky stuff, but as a baby, we found out that she carries the gene for CF, so we watch for that too. She may just be a carrier, so far nothing has manifested, and in the early Spring she had an episode of Rheumatic Fever. She knows that she has to be careful not to get sick, but this little one of mine is so danged tough - she wants to grow up to be a paleontologist, and I plan on sticking around for a long time to see what she can do with her life. My boys also want to do things in natural sciences - biology and marine biology - good stuff.

When I started to get together info on explants, I discussed some of the high points to my kids so they would understand. And I discussed everything I learned with my boyfriend and the fact that when it was all said and done, I wouldn't be getting implants put in to replace the others. It took him by surprise, but he's aware that it's the only choice I can make and he's standing by me.

Now the fun part. Mentally I'm prepared for this, but I haven't had insurance in 13 years - most companies won't even touch me now, and gathering the resources is going to take some time, so I have to be patient and wait.That's a lot to chew on, but again, many thanks for all the good info. It still scares the crap outta me, but I learned a long time ago that it's better to be scared and informed than to be in the dark and surprised in the worst way.

From: glory2glory1401 <glory2glory1401@...> Sent: Tuesday, November 18, 2008 11:36:59 AMSubject: Re: Thanks for the Welcome

Hi Keri,It's possible that your silicone implants have silently ruptured--doyou still have the same ones? That's an awful long time to have thesame implants, if so.Silent ruptures amongst women who have had implants for an extendedperiod of time are very common. But it will take a very good surgeonto clean you out expertly if there is a risk of spilling silicone intoyour body upon explant. Hopefully if there is loose silicone, it iscontained within the capsule.So, what are your thoughts on your situation at this point?It sounds like you are doing what you can...eating right, exercising(I am glad you can still do this!), laughing when you can and enjoyinglife with your kids. I hope it continues for you, and that you canhave the time you need to prepare for the possibility of explant.Here is what I feel is true about having implants: 1) They do not in any way, shape or form

contribute toward GOOD HEALTH2) If a woman is showing signs of illness, it is better to get themout rather than to wait and see what happens, because it is almost agiven that what happens is not good.3) The implants will have to be dealt with at some point in timeanyway. They do not last a lifetime and do not go with you to thegrave intact, unless you die unexpectedly. Implants need to be eitherreplaced or removed at some point in your life, and the current viewis that this should happen every 7 years. (A nice annuity for thoseplastic surgeons.) 4) The safest future you can have is a future without breast implants.If you are seriously considering removing your implants, we can helpdirect you to those surgeons who do a proper explant. I'm sure ifyou've been reading that you are aware that many doctors don't takethe need for removal of scar tissue seriously, and this can make

adifference between healing and not healing.Take care and stay close!Patty>> Thanks for the welcome - I 've been reading a bit here and there from > this website looking for info that might be helpful - and you all are > a wealth of info! I had a double mast when I was 22 - and ended up > with good ole Dow Corning silicone implants. That was the thing back > in the early 80's. Anyway, they completely encapsulated shortly > after the surguries - not a very pretty look, but I had originally > been a 30AA, so the doc used the smallest implants he had. And I'm > assuming that since he took all the breast tissue - he wanted to put > something back. Anyway,

apart from the scar tissue and some loss of > physical strength, I didn't start to notice much until five or six > years ago, when I noticed some odd little lumpy areas. I wasn't in > the position to do much at that time - I was trying to raise 3 > children in the midst of a very stormy relationship. A few years > ago, I noticed that my fingers would go numb and cold and they took > quite a while before they returned to normal. Since I live in a > relatively cold area, I just assumed I had managed to get frostbitten > once or twice. Turns out, I've developed Reynaud's. I started > seriously looking into into explant surgury then, and everything I've > uncovered so far pretty much scares the crap out of me. I didn't > know that the failure rate was so high on silicone and even though > there are some excellent docs in Wyoming, this sort of thing simply > isn't

something most of them deal with. I suppose that's all about > me in a nutshell. I try to stay as healthy as I can - eat right, > excercise, laugh at the stupidest things, and enjoy hanging with my > kids. I sound like a Geritol commercial. Anyway, again thanks for > all the info and warmest thoughts to all the folks on this site.>

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