New Member, new story, many ?'s

[Guest guest]

Hi, my name is Sharon and I am new to this group. Thank you to

Patty who invited me to join! The information I have found on this

site and from the many testimonies has been invaluable to me, but

the fact that they are real testimonies of real women who have been

through so much moved me to tears. I am thankful that I have found

this site, but wish there wasn't a reason for it to exist...it

really disturbs me that the medical profession can mislead so many,

and describe something as " safe " with only the " fine print " of the

product package insert to describe otherwise. I read it just prior

to surgery, but my surgeon quickly put me at ease, saying that he

had not heard of any problems in the 6 years he had been in practice

there. Not an impressive record, I know, but my situation was

different from many I have read, and I was anxious to get on with

what I considered a way to regain what I would lose, and focus on

healing, and getting on with my life.

I had been diagnosed with breast cancer in January of 2002. I can't

even begin to describe how a diagnosis like that changes your life.

All I can say is that I am thankful for my Christian faith, my

family & friends who were with me through that difficult time. As

anyone would, all I thought about during that period of diagnosis

was getting the cancer OUT and FAST. I spent nights researching on

the internet, reading books, talking to many who I was referred to,

and praying. There were just 2 short weeks between the time of my

diagnosis and my surgery. I elected to have a total mastectomy with

immediate reconstruction, using saline implants. I still feel the

total mastectomy was the right choice for me...I was told later by a

breast cancer specialist I saw that it spared me from chemotherapy &

radiation. I didn't want to take any chance of recurrence, and in

my mind, my breasts were not worth saving vs. that risk. My husband

was very supportive. And, at the time, I thought I was making the

right reconstuction choice as well. It was great - I felt it would

help me pshychologically to deal with the loss, to not have to worry

where & when I could dress, and being an active outdoors person, I

could get back to my lifestyle, feeling healthy & whole again. Of

course I knew it would never be the same as having real breasts, I

didn't place my expectations too high, and despite the ordeal of

getting implants...the many office visits & procedures involved in

reconstruction... I was content. Yes, they felt weird, even look a

bit abnormal, but hey, it was good enough for me and I could get on

with my life.

Of course, you all know the rest of the story....now I am dealing

with symptoms of an " unknown autoimmune disorder " . For now, I'll

spare the details of what has been going on since my implant

surgery. But the short version is that I have continually

complained to my Doctor, my Gynocologist and my Oncologist on

occasions that I have seen them, that something wasn't " right " .

With some continuing menstrual bleeding problems I had (a factor in

my cancer to begin with), I had anemia, and most of my " stange

feeling in my head " , tingling hands and feet, memory problems,

fatigue, etc. I attributed to that. But the anemia eventually went

away, but my symptoms did not. Of course, being a " cancer

survivor " , your no. 1 worry is that it is still lurking somewhere in

your body. But I've had tests to outrule most of those concerns.

Just before Christmas, on a hunch, my doctor did an ANA test and was

surprised at the result...the value was a 6...very high she told

me. So, I began the search into autoimmune disorders, bought a

book, etc. & what I learned was that some other symptoms....dry

eyes, ringing in the ears, joint pain, etc. etc. were things I was

also experiencing. I resigned myself to believe that an autoimmune

disease may just be my fate...I knew I could count on God's grace to

get me through just as He helped me through my cancer experience.

Then I remembered something I saw on that package insert 2 years

ago, and here I am. Now, I am convinced that the implants are the

cause of some, if not all, of the symptoms I am experiencing. So

far, I have been able to carry on with my life, but I have quit

many " extra " activities I enjoyed, have given up most of my " outdoor

pursuits " ..skiing, hiking, etc. The worst part for me is the " brain

fog " , hard to describe feeling in my head & resulting slow eye

movement almost as if I was drunk. I have tried to describe that

for 2 years to my doctors. One referred me to an allergist, but the

changes I made in our home made little difference. Then I thought

the new home we built, and all the polyurethane staining I did could

have caused it. I also have many mercury fillings, and have learned

that they, too, can cause heavy metal toxicity and an auto immune

response. Now knowing that autoimmune response is often associated

with an environmental cause, I believe it is the silicone or fungus

or who knows what associated with my implants that is causing me

these symptoms. After reading the many testimonies, I see that

symptoms come soon after implant to some, years later in others, but

always get worse over time. So, I am resigning myself to the

realization that they must come out. I am hoping I can get my

Doctors to support me, and am even hoping for a test to link the

implants to my symptoms (not likely, right?). It is doubtful that I

will get my insurance to cover this, as I will have to go " out of

the approved physician " range to find someone who I trust to do it.

Sounds like many of you did this as well. So far, the best option

for me might be Dr. Huang, out of Denver. I am not living there

now, but grew up there & have family there as well. Do any of you

have experience with her? I may even opt to drive/fly to Cleveland

to see Dr. Feng (I live in the " northwoods " of Wisconsin). Are the

wait lists for these doctors services typically long?

I have yet to contact them. Right now, I am preparing for my first

referral to a Rhuematologist...appt. is Monday. I am wondering how

much I should share about my concerns. My family doctor is

intrigued by the possibility of my symptoms being related to my

implants, and believes me, but is limited in what she can do. I do

not want to put the Rheum. Dr. on the defensive, but want him to be

open minded. Any ideas on this? Or on tests I should ask for? I

have started a file with my blood work so far.

Well, I have rambled on long enough. I had wanted this to be short,

and just kept typing! Guess you all know how this can preoccupy

your mind! Thanks for listening, I am hoping to get to know you

better. Praying His blessings on you!

Sharon

[Guest guest]

Sharon,

So good to see you posting. I am sorry about what you have gone through. My goodness, breast cancer is enough...

It is a frightening prospect when faced with the idea that the doctors have not really revealed to us the seriousness of these diseases that we are experiencing from "safe" saline implants. You will be on another journey of learning. Keep asking questions, but tread carefully when discussing this very controversial subject with your doctors. I am glad to hear you have an open minded doctor on your side so far, but just keep in mind that the rheumatologists, and most doctors for that matter, just do not believe us and will try to convince you otherwise.

I know that horrible brain fog you described well....I remember the "drunk" feeling when I was first sick. Thank God that is gone now, but it was just a nightmare. I could not get clear headed no matter what I did. It was probably the one thing that drove me to near suicide, and the cause of most of my depression.

Getting your implants out would be the very smartest thing you could possibly do. Your situation is a difficult one, and I do sympathize with you on the loss of your breasts. It is emotionally a very difficult time, a very difficult situation. But health must come first. God will see you through this. He knows your fears, He knows your needs, and Praise His name, He knows best.

Trust Him. Keep us informed of your decisions, as we all care....thanks for sharing with the group!

Patty

----- Original Message -----

From: northwoods7380

Sent: Friday, January 09, 2004 9:56 AM

Subject: New Member, new story, many ?'s

Hi, my name is Sharon and I am new to this group. Thank you to Patty who invited me to join! The information I have found on this site and from the many testimonies has been invaluable to me, but the fact that they are real testimonies of real women who have been through so much moved me to tears. I am thankful that I have found this site, but wish there wasn't a reason for it to exist...it really disturbs me that the medical profession can mislead so many, and describe something as "safe" with only the "fine print" of the product package insert to describe otherwise. I read it just prior to surgery, but my surgeon quickly put me at ease, saying that he had not heard of any problems in the 6 years he had been in practice there. Not an impressive record, I know, but my situation was different from many I have read, and I was anxious to get on with what I considered a way to regain what I would lose, and focus on healing, and getting on with my life. I had been diagnosed with breast cancer in January of 2002. I can't even begin to describe how a diagnosis like that changes your life. All I can say is that I am thankful for my Christian faith, my family & friends who were with me through that difficult time. As anyone would, all I thought about during that period of diagnosis was getting the cancer OUT and FAST. I spent nights researching on the internet, reading books, talking to many who I was referred to, and praying. There were just 2 short weeks between the time of my diagnosis and my surgery. I elected to have a total mastectomy with immediate reconstruction, using saline implants. I still feel the total mastectomy was the right choice for me...I was told later by a breast cancer specialist I saw that it spared me from chemotherapy & radiation. I didn't want to take any chance of recurrence, and in my mind, my breasts were not worth saving vs. that risk. My husband was very supportive. And, at the time, I thought I was making the right reconstuction choice as well. It was great - I felt it would help me pshychologically to deal with the loss, to not have to worry where & when I could dress, and being an active outdoors person, I could get back to my lifestyle, feeling healthy & whole again. Of course I knew it would never be the same as having real breasts, I didn't place my expectations too high, and despite the ordeal of getting implants...the many office visits & procedures involved in reconstruction... I was content. Yes, they felt weird, even look a bit abnormal, but hey, it was good enough for me and I could get on with my life.Of course, you all know the rest of the story....now I am dealing with symptoms of an "unknown autoimmune disorder". For now, I'll spare the details of what has been going on since my implant surgery. But the short version is that I have continually complained to my Doctor, my Gynocologist and my Oncologist on occasions that I have seen them, that something wasn't "right".With some continuing menstrual bleeding problems I had (a factor in my cancer to begin with), I had anemia, and most of my "stange feeling in my head", tingling hands and feet, memory problems, fatigue, etc. I attributed to that. But the anemia eventually went away, but my symptoms did not. Of course, being a "cancer survivor", your no. 1 worry is that it is still lurking somewhere in your body. But I've had tests to outrule most of those concerns.Just before Christmas, on a hunch, my doctor did an ANA test and was surprised at the result...the value was a 6...very high she told me. So, I began the search into autoimmune disorders, bought a book, etc. & what I learned was that some other symptoms....dry eyes, ringing in the ears, joint pain, etc. etc. were things I was also experiencing. I resigned myself to believe that an autoimmune disease may just be my fate...I knew I could count on God's grace to get me through just as He helped me through my cancer experience.Then I remembered something I saw on that package insert 2 years ago, and here I am. Now, I am convinced that the implants are the cause of some, if not all, of the symptoms I am experiencing. So far, I have been able to carry on with my life, but I have quit many "extra" activities I enjoyed, have given up most of my "outdoor pursuits"..skiing, hiking, etc. The worst part for me is the "brain fog", hard to describe feeling in my head & resulting slow eye movement almost as if I was drunk. I have tried to describe that for 2 years to my doctors. One referred me to an allergist, but the changes I made in our home made little difference. Then I thought the new home we built, and all the polyurethane staining I did could have caused it. I also have many mercury fillings, and have learned that they, too, can cause heavy metal toxicity and an auto immune response. Now knowing that autoimmune response is often associated with an environmental cause, I believe it is the silicone or fungus or who knows what associated with my implants that is causing me these symptoms. After reading the many testimonies, I see that symptoms come soon after implant to some, years later in others, but always get worse over time. So, I am resigning myself to the realization that they must come out. I am hoping I can get my Doctors to support me, and am even hoping for a test to link the implants to my symptoms (not likely, right?). It is doubtful that I will get my insurance to cover this, as I will have to go "out of the approved physician" range to find someone who I trust to do it.Sounds like many of you did this as well. So far, the best option for me might be Dr. Huang, out of Denver. I am not living there now, but grew up there & have family there as well. Do any of you have experience with her? I may even opt to drive/fly to Cleveland to see Dr. Feng (I live in the "northwoods" of Wisconsin). Are the wait lists for these doctors services typically long?I have yet to contact them. Right now, I am preparing for my first referral to a Rhuematologist...appt. is Monday. I am wondering how much I should share about my concerns. My family doctor is intrigued by the possibility of my symptoms being related to my implants, and believes me, but is limited in what she can do. I do not want to put the Rheum. Dr. on the defensive, but want him to be open minded. Any ideas on this? Or on tests I should ask for? I have started a file with my blood work so far. Well, I have rambled on long enough. I had wanted this to be short, and just kept typing! Guess you all know how this can preoccupy your mind! Thanks for listening, I am hoping to get to know you better. Praying His blessings on you!Sharon

[Guest guest]

--

Sharon

Welcome to the group. I am so thankful you found this group as I

believe it will be the beginning of you getting better! It must be

devastating to go from one life threatening condition to another

illness from the implants. I believe you are on the right track and

getting out your implants will give you a real chance to get your

life back. Please make sure to go to someone experienced in

explantation as well as sold on the idea that implants cause

autoimmune illness. Also, it is important to detoxify the body and

deal with any issues such as candida and mycoplasma--which many of

us have. There are many, many good suggestions on the site for

getting well. God bless you in your journey back to wellness

Blessings,

kathy

- In , " northwoods7380 "

<northwoods7380@y...> wrote:

> Hi, my name is Sharon and I am new to this group. Thank you to

> Patty who invited me to join! The information I have found on

this

> site and from the many testimonies has been invaluable to me, but

> the fact that they are real testimonies of real women who have

been

> through so much moved me to tears. I am thankful that I have

found

> this site, but wish there wasn't a reason for it to exist...it

> really disturbs me that the medical profession can mislead so

many,

> and describe something as " safe " with only the " fine print " of the

> product package insert to describe otherwise. I read it just

prior

> to surgery, but my surgeon quickly put me at ease, saying that he

> had not heard of any problems in the 6 years he had been in

practice

> there. Not an impressive record, I know, but my situation was

> different from many I have read, and I was anxious to get on with

> what I considered a way to regain what I would lose, and focus on

> healing, and getting on with my life.

>

> I had been diagnosed with breast cancer in January of 2002. I

can't

> even begin to describe how a diagnosis like that changes your

life.

> All I can say is that I am thankful for my Christian faith, my

> family & friends who were with me through that difficult time. As

> anyone would, all I thought about during that period of diagnosis

> was getting the cancer OUT and FAST. I spent nights researching

on

> the internet, reading books, talking to many who I was referred

to,

> and praying. There were just 2 short weeks between the time of my

> diagnosis and my surgery. I elected to have a total mastectomy

with

> immediate reconstruction, using saline implants. I still feel the

> total mastectomy was the right choice for me...I was told later by

a

> breast cancer specialist I saw that it spared me from chemotherapy

&

> radiation. I didn't want to take any chance of recurrence, and in

> my mind, my breasts were not worth saving vs. that risk. My

husband

> was very supportive. And, at the time, I thought I was making the

> right reconstuction choice as well. It was great - I felt it

would

> help me pshychologically to deal with the loss, to not have to

worry

> where & when I could dress, and being an active outdoors person, I

> could get back to my lifestyle, feeling healthy & whole again. Of

> course I knew it would never be the same as having real breasts, I

> didn't place my expectations too high, and despite the ordeal of

> getting implants...the many office visits & procedures involved in

> reconstruction... I was content. Yes, they felt weird, even look

a

> bit abnormal, but hey, it was good enough for me and I could get

on

> with my life.

>

> Of course, you all know the rest of the story....now I am dealing

> with symptoms of an " unknown autoimmune disorder " . For now, I'll

> spare the details of what has been going on since my implant

> surgery. But the short version is that I have continually

> complained to my Doctor, my Gynocologist and my Oncologist on

> occasions that I have seen them, that something wasn't " right " .

> With some continuing menstrual bleeding problems I had (a factor

in

> my cancer to begin with), I had anemia, and most of my " stange

> feeling in my head " , tingling hands and feet, memory problems,

> fatigue, etc. I attributed to that. But the anemia eventually

went

> away, but my symptoms did not. Of course, being a " cancer

> survivor " , your no. 1 worry is that it is still lurking somewhere

in

> your body. But I've had tests to outrule most of those concerns.

> Just before Christmas, on a hunch, my doctor did an ANA test and

was

> surprised at the result...the value was a 6...very high she told

> me. So, I began the search into autoimmune disorders, bought a

> book, etc. & what I learned was that some other symptoms....dry

> eyes, ringing in the ears, joint pain, etc. etc. were things I was

> also experiencing. I resigned myself to believe that an

autoimmune

> disease may just be my fate...I knew I could count on God's grace

to

> get me through just as He helped me through my cancer experience.

> Then I remembered something I saw on that package insert 2 years

> ago, and here I am. Now, I am convinced that the implants are the

> cause of some, if not all, of the symptoms I am experiencing. So

> far, I have been able to carry on with my life, but I have quit

> many " extra " activities I enjoyed, have given up most of

my " outdoor

> pursuits " ..skiing, hiking, etc. The worst part for me is

the " brain

> fog " , hard to describe feeling in my head & resulting slow eye

> movement almost as if I was drunk. I have tried to describe that

> for 2 years to my doctors. One referred me to an allergist, but

the

> changes I made in our home made little difference. Then I thought

> the new home we built, and all the polyurethane staining I did

could

> have caused it. I also have many mercury fillings, and have

learned

> that they, too, can cause heavy metal toxicity and an auto immune

> response. Now knowing that autoimmune response is often

associated

> with an environmental cause, I believe it is the silicone or

fungus

> or who knows what associated with my implants that is causing me

> these symptoms. After reading the many testimonies, I see that

> symptoms come soon after implant to some, years later in others,

but

> always get worse over time. So, I am resigning myself to the

> realization that they must come out. I am hoping I can get my

> Doctors to support me, and am even hoping for a test to link the

> implants to my symptoms (not likely, right?). It is doubtful that

I

> will get my insurance to cover this, as I will have to go " out of

> the approved physician " range to find someone who I trust to do it.

> Sounds like many of you did this as well. So far, the best option

> for me might be Dr. Huang, out of Denver. I am not living there

> now, but grew up there & have family there as well. Do any of you

> have experience with her? I may even opt to drive/fly to

Cleveland

> to see Dr. Feng (I live in the " northwoods " of Wisconsin). Are

the

> wait lists for these doctors services typically long?

> I have yet to contact them. Right now, I am preparing for my

first

> referral to a Rhuematologist...appt. is Monday. I am wondering

how

> much I should share about my concerns. My family doctor is

> intrigued by the possibility of my symptoms being related to my

> implants, and believes me, but is limited in what she can do. I

do

> not want to put the Rheum. Dr. on the defensive, but want him to

be

> open minded. Any ideas on this? Or on tests I should ask for? I

> have started a file with my blood work so far.

>

> Well, I have rambled on long enough. I had wanted this to be

short,

> and just kept typing! Guess you all know how this can preoccupy

> your mind! Thanks for listening, I am hoping to get to know you

> better. Praying His blessings on you!

>

> Sharon

[Guest guest]

Sharon,

There are a couple points you need to remember when discussing your explant...I know you are not at that point yet, but I wanted to address it because Rogene pointed out a few things. What you want to make sure you have is a "total capsulectomy"--a total removal of the scar tissue around the implant--but Rogene is right, with silicone gel implants, you will want an "en bloc" removal. This is where the implant and scar capsule are removed as a single unit so that nothing gets spilled into the chest cavity. But it is very important to have not only the implants out, but the capsule as well.

Second, you may want to discuss the need for drains with your explanting surgeon. Drains will ensure that all the fluid that fills in the pocket left from your implants will be removed from the body--an important aspect since that fluid may have stuff in it that you won't want in your body anyway...such as residual silicone particles, bacteria or other undesireable pathogens that won't just disappear with explant surgery.

You can research this more when you cross that line, but i just wanted to throw this out there. Let us know how your appt goes with the rheumy.

Patty

----- Original Message -----

From: Rogene S

Sent: Sunday, January 11, 2004 10:04 PM

Subject: Re: Re: New Member, new story, many ?'s

Sharon,

Of all the medical professionals, rheumotologists seem to be the least supportive. Perhaps it was because they were given the task of "certifying" our illnesses when the lawsuits began. . . The illnesses we have often are "-like" diseases. Some of the doctors played along with the attorney's trying to get settlements - the end result was that not only did the doctors and attorneys lose credibility, but so did the women - with the help of public relation campaigns financed by the manufacturers and plastic surgery industry.

We get just as sick in the same ways, but when push comes to shove, something is different! . . . Thankfully the BIG difference is that, when we get the implants out, we usually improve!

Many plastic surgeons could remove your implants properly . . . All of them SHOULD be able to do so . . . But, the ones recommended by the women here are those who take the time to do it right, get good cosmetic results and treat the women respectfully. Not all doctors have a long waiting list. You might find a good doctor locally on your health insurance program. . . Call and ask . . . Go for an interview if one sounds promising. You shouldn't have to pay for an initial consultation.

What you need to ask is if the doctor removes them "en bloc" . . . They should remove the capsule with the implant still inside. With salines, they may drain the implant first - The goal is to remove the implant without allowing any fluid from the implant to escape into your chest cavity. This fluid may be contaminated - In fact, some women have experienced toxic shock when their implants rupture. . . .

Secondly, you want a doctor who will get good cosmetic results. . . If a doctors tells you that you will be deformed, . . . know that he's speaking very poorly of HIS/HER skills! . . . Because of your mastectomy, you won't be returned to "whole", but you should expect the best cosmetic results possible.

If your doctor tells you that you won't be happy flat chested, know that he can't speak for you. . . I have several friends who have declined reconstruction and are as happy and as well adjusted as anyone! . . . Much happier than the women who have gotten sick from implants are. . .

If the surgeon wants to do a flap reconstruction, (either from your stomach or back), know that you will sacrifice a muscle that performs a function to make a breast for strictly cosmetic purposes. . . . (IMHO, the politicians who got the law passed that required that women who have breast cancer MUST be offered reconstruction were in the pocket of the implant manufacturers!)

Some day, this will turn around completely! . . . They will be able to grow breast (and other tissues) from your own cells . . . Until then, we can practice acceptance.

If you have any questions, I'm sure some of the wonderful ladies here will be glad to help. Just let us know what you need.

Hugs and prayers,

Rogene