New to the support group

July 19, 2005

Allyson

Welcome to our group - I am glad you have found us. I know how you are feeling as I went on that same search a few years ago looking for the causes if my illnesses and was scared to death that all my searches were leading to my implants. I had mine (mentor saline textured 250cc under the muscle) for 7 years. They have been out for 2. I know this is a scary time for you but you must get those nasty implants out... I have talked with soooo many women with the same stories... they do make you sick. i actually have been tested for graves several times as my eyes are large and tend to bug a little and docs keep testing me for it - luckily so far I am negative but you never know.

As for the implant removal - you must have them removed intact - not drained first.... that water in there is nasty but now and you do not want any chance of that getting inside you... I do not know your specifics.... what size and over/under the muscle? Mine were removed intact thru an incision in the crease under my breasts... I did not get a lift as I didn't need one so my scarring is very minimal.... It really depends on your situation as to how they will get them out and how big the incision will be, etc. you may very well need a lift in which there may be a little more scarring but I have seen many women here that have had that done by a GOOD doctor and it is barely noticeable ... you just have to watch where you go. The ladies here can lead you to a good doc. When I go my implants I had NO boobs and got rather small implants so when they removed them I pretty much went back to normal in time.... some ladies who are saggy going in or have really big implants may need a lift. if it is done correctly it will not be a big deal. My incisions were about 4 inches in the crease - they are barely noticeable now... my breasts hang just enough to cover them and they are fading fast as I am using vit E to help. Since mine were textured (which I am pretty sure your are not as I think they took those off the market) and under the muscle for so long it took some work to get them out... they were stuck to my ribs due to the texture and the scarring but hopefully that will not be the case with you after only 3 years but the faster you get them out the better off you are. My doc is in Florida.. there are many other listed in the files section of our group that are wonderful.... depends on where you are, what you need, and how much $$ you have. this is he rest of your life we are talking about so whatever it takes - you should do it - find a way, they are out there. my breasts went through 4 surgeries total as I had several complications while implanted and I breastfed for 9 months and they were hugs and they look normal now - nobody would know if I didn't tell them.

I hope some of this is good info for you - feel free to write anytime - we are always here to help!!!!! My webpage will give you details of my story as well as my illnesses, my SON'S illnesses due to breastfeeding, pics of my implants after removal - you really need to see that one to make yo understand that time is important, and very good link to other sick women, Doctors advise, etc. please go there and check it out as may answer many of your questions.

www.BreastImplantAwareness.org/shari.htm

love

shari

July 19, 2005

Hi Allyson,

A few months ago I found this list when I was contemplating getting implants. Fortunately the kind women here talked me out of it.

I can’t help you with any of your implant-related questions but I can point you in the direction of an excellent naturopath. I see Dr. Leu in Tulsa, Oklahoma. He does do phone consultations and treatment. Although I do not have implants, I do have a compromised immune system and liver. Dr. Leu treats me holistically for both, doing lots of heavy detoxing and supplementation. I have had numerous tests that show exactly what is wrong and what supplements are needed to correct the imbalance. I used to be extremely sick with a lot of the same problems women here have, fibromyalgia, IB, candida, etc. I have been symptom free of all of these problems for several years. There is at least one woman on this list that is also currently treating with him. Dr. Leu is extremely thorough and very kind, as is his staff.

Best wishes!

Kenda

Hello,

I just wanted to introduce myself. My name is Allyson I live in

Virginia and I have had saline Implants for 3 years now. In December

I began having swelling in my right eyelid and in Feb. I was

diagnosed with hypertyriodism/ graves autoimmune disease. I have

been looking for a reason for the impairement of my immune system and

much to my disappointment, my reasearch is leading me to consider

that I may need to consider the removal of my implants. This is a

scary thought in it self. I am concerned about how my breast will

look after the removal and how the doctor will manage this with out

deflating the implants. If anyone could tell me how they had their's

removed. I am concerned about how he will remove them without having

to cut me wide open. Are there methods of removing the saline from

it's pouch without leaking it into your body. Also, i've been

reading about shipping them to this Dr. to look at then after they

are removed. Is this something I should consider and why. Also if

anyone knows how to locate a licensed herbalist or someone who can

assist me in the detoxification process that would be great. I'm

having difficulty locating them. If anyone has any words of advise

in what i should do I'm listening. I go back to the endo. on

Thursday, but I have a feeling that my blood work will still be off.

I don't think that she even has a clue as to looking at treating me

in a more holistic approach. She has basically told me to relax

because she is the specialist and thinks that she knows a little more

about this than me. Yet all she has done is put me on med's that have

not done anything for me. My eye lid is still swollen, and it is

sensitive due to the lid drawing back and it gets sore because of the

muscle issues. I'm sorry to go on this way, but after finding this

support for the first time I feel like I may be on the righr path to

my recovery. There is no way to know for sure if the implant are

what is causeing this, but I don't want to take that chance. It does

not seem smart. Thanks for the support!

Allyson

July 19, 2005

Welcome Allyson,

You are soooooo typical of many women who come to the

group after getting a hint that their implants may be

behind their health problems. . . .

We can't PROVE scientifically they are, but from what

we see, there's no doubt! . . . Most of the women

begin getting better shortly after getting their

implants removed. Others take somewhat longer. The

longer the implants are in, the more bacteria you

have, and the way the implants are removed all play a

role in how long it will take you to recover.

First . . . getting them removed properly is

essential. We have a list of doctors we recommend.

Even then, you want to confirm they will remove the

implants 'en bloc' and insert drains. The doctor

should be able to drain the saline via a needle before

removing the capsule with the implant still inside.

Virtually all the women feel that it was more

important to have the implants out than anything else.

Nevertheless, you should not feel disfigured! If a

doctor tells you that, it's the wrong doctor! He/she

is speaking of their OWN skills!

Dr. Blais will examine your implants scientifically.

He will grow cultures to see what's in your implant.

Certain bacteria require extended treatment to get rid

of. If there's a chance for a law suit, his report

will be very important to you. . . DO NOT take custody

of your implants if you think you may sue . . . your

implants must go from your medical facility directly

to Dr. Blais. His report can also facilitate getting

your insurance to pay for explant.

Women who have had implants can be presumed to have a

systemic fungal/yeast problem. Some of the doctors

start their patients on an antifungal program before

explant, continuing it following explant. Diet is very

important! . . . No sugar (it feeds fungus/yeast),

refined grains, processed foods - organic if possible.

Drink a lot of pure water (no clorine). The book " The

Maker's Diet " by Rubin is a good read as well as an

excellent diet. Rubin founded The Garden of Life

product line. We've found all his products to be

outstanding.

For treatment, we've found that most medical doctors

don't have a clue when it comes to treating us. A good

naturopath is usually better . . . but finding a good

one can be difficult! . . . The naturopath Kenda

recommended (Dr. Leu, Tulsa, OK) should be an

excellent doctor to consult. He's as close as your

phone. He will send you a kit for any tests he

believes are needed.

Personally, I'm highly suspect when a doctor tells me

to leave it all to them! . . . Doctors are the ones

who got us into this mess. When you see a doctor, keep

in mind the doctor is working FOR YOU! . . . If what

the doctor says doesn't make sense or treat you right,

demand that they treat you right, or move on!

For the time being, it really doesn't matter what your

tests show or what diagnoses they give you (unless you

want to satisfy your curiosity). After getting your

implants removed, most of these symptoms will

disappear. AND . . . any diagnoses that go on your

record may affect your ability to get insurance in the

future!

There is a study of sick implanted women just getting

started. Sick Silicone Syndrome Study (SSSS). .

contact Deb Pettitt dpettitt@... .

Participating is free. She will send you a kit for

specimens. You need to do this before getting your

implants removed. She is also interested in testing

children born to implanted women. This is the first

study done of sick women!!! Fourty years after

implants were introduced!!! Is that insane, or not?

The women on this group are here to help others get

through this experience as easily and quickly as

possible. If you have any questions, feel free to ask.

We really, really want to help!

Hugs and prayers,

Rogene

July 19, 2005

Hi allyson and welcome to our group. I am sorry that you are

experiencing problems with hyperthyroidism. Hopefully it is related

to your implants and will improve on explant. My husband was

diagnosed with graves disease and his father had it also. The endo

talked him into rushing into having his thyroid irradiated. Since

it was slightly hyperthyroid I felt that was excessive but he made

it sound like such an easy fix and went for it. They never did get

his thyroid meds regulated after that. His father had had his

irradiated and that worked fine for a few years, but doctors

neglected to follow up. His thyroid eventually failed, they didn't

pick it up, and the low thyroid eventually cause permanent heart

damage. If your hyperthyroidism isn't severe, it is probably a good

idea of working holistically speaking to try and get your body to

heal itself.

Even if your thyroid problem would be unrelated to your implants,

(and there isn't a sure way to tell) your autoimmune reaction will

undoubtedly predispose your body to reacting to the implants with

other autoimmune symptoms. Therefore it is a very good idea to get

them out! Kenda knows a naturalpathic doctor that she thinks is

very comprehensive. Unfortunately he is in oklahoma. But he does

do phone consults. Sometimes if you go to health food stores, they

know of doctors or nutritionists or herbalists in the area to

recommend. Have you tried that?

I feel that there is much you can do to improve your situation, and

getting an explant is definitely worth pursuing.

Hugs, kathy

> Hello,

> I just wanted to introduce myself. My name is Allyson I live in

> Virginia and I have had saline Implants for 3 years now. In

December

> I began having swelling in my right eyelid and in Feb. I was

> diagnosed with hypertyriodism/ graves autoimmune disease. I have

> been looking for a reason for the impairement of my immune system

and

> much to my disappointment, my reasearch is leading me to consider

> that I may need to consider the removal of my implants. This is a

> scary thought in it self. I am concerned about how my breast will

> look after the removal and how the doctor will manage this with

out

> deflating the implants. If anyone could tell me how they had

their's

> removed. I am concerned about how he will remove them without

having

> to cut me wide open. Are there methods of removing the saline

from

> it's pouch without leaking it into your body. Also, i've been

> reading about shipping them to this Dr. to look at then after they

> are removed. Is this something I should consider and why. Also if

> anyone knows how to locate a licensed herbalist or someone who can

> assist me in the detoxification process that would be great. I'm

> having difficulty locating them. If anyone has any words of

advise

> in what i should do I'm listening. I go back to the endo. on

> Thursday, but I have a feeling that my blood work will still be

off.

> I don't think that she even has a clue as to looking at treating

me

> in a more holistic approach. She has basically told me to relax

> because she is the specialist and thinks that she knows a little

more

> about this than me. Yet all she has done is put me on med's that

have

> not done anything for me. My eye lid is still swollen, and it is

> sensitive due to the lid drawing back and it gets sore because of

the

> muscle issues. I'm sorry to go on this way, but after finding

this

> support for the first time I feel like I may be on the righr path

to

> my recovery. There is no way to know for sure if the implant are

> what is causeing this, but I don't want to take that chance. It

does

> not seem smart. Thanks for the support!

>

> Allyson

December 19, 2008

Hi all - my name is Talia and my son Charlie is 16mnths old and has

blepharophimosis. His Dad Mike also has the condition. We have attended

an eye clinic and got a lot of great help from the specialists there

(here in Auckland, NZ) but until now have not been in contact with any

other people effected by BPES. I found this site yesterday and since

then have been pouring over your photos and messages! Until we had

Charlie, Mike never knew he could pass his 'eyes' on. He grew up

thinking that he was the only person in the world with the eye

condition and didn't even know what it was called. So you can imagine

his shock when Charlie was born. It has taken us a while to get used to

it all and get all the info that Mike never had. I personally think

it's so special for Charlie to have his Dad as Mike never had anyone.

But I would love to be in contact with other families - if there are

some in NZ or Australia that would be even better! So I am very pleased

to find this site! We have been told that Charlie won't have his

operations till 3 or 4 yrs old (first for the folds and second for the

lift) and his eyesight is monitored every 4 months to check for lazy

eyes etc.

For me the hardest thing about this condition is just the daily looks

that people give Charlie. I know this is ridiculous and he's healthy

and I should be more concerned about his eyesight but it's hard when

you are daily asked if he is sleepy or part Asian!!! I feel like

wearing a t-shirt explaining it all so I don't have to keep on

repeating myself but on the other hand I want to shout it to the

rooftops cos I want people to know about it. According to our

opthamologist NZ randomly has a high incidence of BPES (about 7

families) but that doesn't mean that anyone has ever heard of it.

Anyway - that's my little essay! Charlie is an amazing, gorgeous,

hilarious little person and I wouldn't change him for the world. His

Dad isn't bad either...!! In fact Mike wouldn't be the amazing man I

love with 'normal' eyes. He is who he is because of his past

experiences.

All the pictures posted on this site are so beautiful - I have to say I

shed a little tear to see all the gorgeous families and raced to post

my own!! I look forward to knowing more about you all and hear your

stories. Thank god for the internet!!

Talia

December 19, 2008

Hi Talia (and Mike)

Welcome to the group.

Just a comment on the info about “NZ high incidence of

BPES”. I am not medically trained, but having done some investigation on

the stats, by country, I think it is more the case that the healthcare in NZ is

good, and that people are Internet savvy. The combination of those two can make

it look like there is a high incidence. By way of comparison, there Norway and

New Zealand are about the same size, both countries have good healthcare, and

both countries have about the same number of people with BPES (from what we

know so far). However, the Norway families are not all members of this site,

nor are the active in the conversations. Interesting, isn’t it? That a

country half way round the world from you can share something with you.

Take care

Shireen Mohandes

London, England (am 47, with BPES, born in Iran, but have lived

in England for about 35 years now)

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of talia.goodger

Sent: 19 December 2008 07:54

blepharophimosis

Subject: blepharophimosis New to the support group

Hi all - my name is Talia and my son Charlie is

16mnths old and has