Re: my story!

[Guest guest]

,

I think we might have spoken on this before, but I had the exact same

experience of coming to my flatback diagnosis after first stumbling on

to that Mina site. Glued to the monitor I couldn't believe what I was

reading, and no doctor needed to tell me I had flatback....I was sure.

I hope as you go through the coming months you will be able to sort

this all out. Keep looking for answers that seem right to you...just

the way you felt when you read that article...you will have the same

feeling when you find the medical or other approach that is right for

you.

Best, Cam

[Guest guest]

Thanks for sharing your full story, , I didn't know all your

details. As you wrote to Sharon, I don't know how to respond that you

are motivated by pain to make additional appointments. Wish you

didn't have to. I hope your knees are responding to the treatment.

Nice to " chat " with you again. Ann

> Wow - I just came online to post my story as I had promised and to

> my surprise - there were approximatly 80 new posts for me to read

> since I last checked in on Friday night!!! Goodness Cam -- this

site

> is growing quickly! Good job to all! OK, at the risk of boring

> anyone, here is my story:

>

> Had origional spinal fusions (2 of them) when I was 12 1/2

> years old in Feb. 1974 at Newington Childrens Hospital in

Newington,

> CT ( I live in RI). I actually had three curves - my bottom curve

> was left untouched. Fast forward 29 years. After the birth of my

> second child, I fell down my garage steps and ended up making an

> appointment with the origional surgeon, whom I had been still

seeing

> off and on (about every 5 yrs.) since my origional surgery. I had

> gone to my local ER when I fell, frightened because I literally

went

> down 13 steps with my tailbone hitting each and every step like

> someone had me by my head on a bungee! At the ER, they xrayed and

> said that my coccyx was broken and there was nothing they could do.

> Just to rest --blah, blah, blah. Two weeks later I was still

walking

> around like I had a stick up my you-know-what! So, I decided to

call

> the origional doc. My husband came with me and although he never

> mentioned anything about flatback, when my husband asked if I was

> going to be ok and whether we should anticipate any problems as I

> got older, he kind of snapped at him and looked at him like he had

> three heads and said, " Of course, she is NOT going to be ok - Look

> at her! Does her back and those xrays look like a person who is

> going to age with no problems???? " She is going to have a he-- of a

> time as she gets older and you will need to step it up and help

> her! " We were so dumbfounded , we just left. I kind of put it in

the

> back of mind until about 2 years later, I was starting to notice

> that my lower back was unusually tired and achey as night

> approached. But at that time I was about 33 or 34 yrs old, had 2

> small children and always picking them up and a full-time homemaker

> and I just figured everyone felt like me!! Well, it gradually got

> worse as the next few years progressed and I would try my hardest

to

> stay relatively thin, and I ran 3-4 miles everyday and took step

> classes and figured I just needed to be in better shape. When I

> suddenly realized that I didn't have energy anymore and I was just

> feeling horrible, one night 2 years ago (April 2003 to be exact!),

> my 2 kids (by then 15yr old and 11 yr old), had gone to bed and my

> husband was out at a meeting and I was tickled that I could

actually

> get to the computer without having to fight anyone for it (I am

sure

> many of you parents can relate to that!). It got to be later and my

> back was killing me sitting here and I was growing restless and

> tired and decided to go to bed. But before I logged off, I suddenly

> had an idea. I thought to myself, " I wonder if they still use

> Harrington Rods or they use something else now " . Whatever made me

> think that, I'll never know and little did I know that in just a

> couple of minutes I was going to enter a whole new phase of my life

> that I could never have fathomed in a million years. So, I punched

> in " Harrington Rod " in to the search box and whoa...........all of

a

> sudden, I see all this stuff written by an Mina. I

thought

> well - who the heck is she? I kept seeing this word " flatback " and

I

> kept ignoring it. Never clicked on that , because I frankly felt

> that that didn't have anything to do with me. So, I sat there

> mesmerized by her work and then all of a sudden, I now noticed this

> statemnet, " If you had Harrington Rods implanted between 19-- and

19-

> -, click here as you may be suffering from a complication called

> Flatback Syndrome " . My heart just about stopped and I actually

cried

> out, " No -please God, don't let this affect me " . I didn't even know

> anything yet, but I sensed that it was something I didn't want any

> part of. So, I relunctantly clicked on it and, well I am sure that

> you all experienced the same feeling as I. I was staring at the

> moniter and couldn't read fast enough. Then, I reread it and then I

> reread it again because I then realized that I wasn't able to read

> it well because tears were running down my face. I sat here

> astounded and shocked and betrayed and scared and totally, totally

> overwhelmed. Then, all of a sudden I heard the garage door open and

> my husband come up the stairs. He came into the study, shocked that

> I would still be up. He took one look at me and said, " What is

> wrong " and came to my side and I just pointed to the moniter and he

> started to read. He just stared at me and said, " Oh my God - honey

> that woman looks just like you. You bend just like that and those

> are your symptoms " . I will never forget that moment. It was total

> despair. I went into a depression for a couple of weeks only

sharing

> what I had read with my sister who happens to be an RN. She was

> shocked too and read all the info I printed out for her and she

> concured with my husband. Then, when I started to tell some

friends,

> I kept getting the same response. " well, you can't really think

that

> you can diagnose yourself from something you read about online " . It

> was difficult to make people understand that yes I could - I KNEW

as

> soon as I read that night, that I did indeed have Flatback. A

couple

> of weeks later, I found the Feisty site and met many of you. That

> October, I met with Dr. Glazer (Boston's Beth Israel) whom I

> had heard of and was privledged to meet at a Scoliosis Chapter

> meeting. He concurred that I indeed had flatback, osteophyte

> formation and spinal canal narrowing at the L5-S1 level, along with

> significant disc degeneration below my fusion. Because I had been

> experiencing neck pain for about 3 years previous to this, he

> explained that I probably had some issue there as well. He

concluded

> that I also have cervical spondylosis and disc degeneration at C5-

C6

> and C6-C7. That will need to addressed as well. Interestingly, soon

> after that appointment, like I didn't have enough to think about, I

> started experiencing knee problems. During the spring of this year,

> it became really bad. I went to see a local ortho here in my town,

> he has diagnosed me with " chondrocalcinosis' or " pseudogout " in my

> knees, no doubt directly related to the flatback. I am now in

> physical therapy for my knees, neck and back while I try to figure

> out what the heck I am going to do. I am now 44 years old with a

> 13yr old son and 17 yr old daughter. I work part-time, which feels

> like full-time and I feel like crap most of the time. I am going to

> make an appointment with Dr. Rand for a second appointment later in

> the year. So, that is my story for the file. I am certain that I

> have bored some, but I must tell you that it is rather therapeutic.

> Everyone should try it!! Hope everyone had a wonderful weekend and

> once again, I am so happy to be here with all of you. We are our

own

> sisterhood, aren' we?

>

> from RI

[Guest guest]

It was Salvaged Sisters that gave me the same " Oh no, that's me "

sensation. It's amazing just how difficult it is to convince people

that there really is something wrong, without being written off as a

malingering hypochondriac, or at best paranoid. I remember trying to

tell my mum what was wrong with me - I pointed out to her that my

knees and hips were bent, so she said something like " yes, you're not

standing up straight, you'll get contractures standing like that " , and

when I showed her what happened if I straightened my knees, she

snapped at me with the all time classic - " Well of course your back

will look bad if you stand like that! " Took a little while for the

other half to be convinced as well, but then he put 2 and 2 together

and realised that the fact I'd been putting my hands on the back of my

waist when walking any distance, so my elbows were kind of stuck out

behind me, and that for a long time I'd been unable to find the

flexibility to drink from a can or bottle while walking and instead

had to stop, lean backward and then drink, was all part of the same

thing.

titch

--

Something unknown is doing we don't know what

[Guest guest]

Hi Franca - It is so good to hear from you again. I DO understnad

your needing a break from all this flatback stuff, but please don't

be a stranger. I really enjoy hearing from you from time to time. I

know that I need to take breaks from time to time too. I suppose it

is pretty healthy to try to clear the mind of your problems on

occasion. Don't feel bad about it. And, by all means, DO NOT FEEL

ALONE!!! We probably all feel dread and anxiety, I guess the goal is

to try to deal with it as best as you can. I too am so grateful that

I have friends here to rely on when I have needed support. I hope if

I can ever help, you wouldn't hesitate to ask. We all need one

another. We're all sisters, remember that! Take care Franca - try

to " chat " on Wednesday night, although I haven't a clue how to do

it!!!!!!!

> > Wow - I just came online to post my story as I had promised and

to

> > my surprise - there were approximatly 80 new posts for me to

read

> > since I last checked in on Friday night!!! Goodness Cam -- this

> site

> > is growing quickly! Good job to all! OK, at the risk of boring

> > anyone, here is my story:

> >

> > Had origional spinal fusions (2 of them) when I was 12 1/2

> > years old in Feb. 1974 at Newington Childrens Hospital in

> Newington,

> > CT ( I live in RI). I actually had three curves - my bottom

curve

> > was left untouched. Fast forward 29 years. After the birth of my

> > second child, I fell down my garage steps and ended up making an

> > appointment with the origional surgeon, whom I had been still

> seeing

> > off and on (about every 5 yrs.) since my origional surgery. I

had

> > gone to my local ER when I fell, frightened because I literally

> went

> > down 13 steps with my tailbone hitting each and every step like

> > someone had me by my head on a bungee! At the ER, they xrayed

and

> > said that my coccyx was broken and there was nothing they could

do.

> > Just to rest --blah, blah, blah. Two weeks later I was still

> walking

> > around like I had a stick up my you-know-what! So, I decided to

> call

> > the origional doc. My husband came with me and although he never

> > mentioned anything about flatback, when my husband asked if I

was

> > going to be ok and whether we should anticipate any problems as

I

> > got older, he kind of snapped at him and looked at him like he

had

> > three heads and said, " Of course, she is NOT going to be ok -

Look

> > at her! Does her back and those xrays look like a person who is

> > going to age with no problems???? " She is going to have a he--

of a

> > time as she gets older and you will need to step it up and help

> > her! " We were so dumbfounded , we just left. I kind of put it in

> the

> > back of mind until about 2 years later, I was starting to notice

> > that my lower back was unusually tired and achey as night

> > approached. But at that time I was about 33 or 34 yrs old, had 2

> > small children and always picking them up and a full-time

homemaker

> > and I just figured everyone felt like me!! Well, it gradually

got

> > worse as the next few years progressed and I would try my

hardest

> to

> > stay relatively thin, and I ran 3-4 miles everyday and took step

> > classes and figured I just needed to be in better shape. When I

> > suddenly realized that I didn't have energy anymore and I was

just

> > feeling horrible, one night 2 years ago (April 2003 to be

exact!),

> > my 2 kids (by then 15yr old and 11 yr old), had gone to bed and

my

> > husband was out at a meeting and I was tickled that I could

> actually

> > get to the computer without having to fight anyone for it (I am

> sure

> > many of you parents can relate to that!). It got to be later and

my

> > back was killing me sitting here and I was growing restless and

> > tired and decided to go to bed. But before I logged off, I

suddenly

> > had an idea. I thought to myself, " I wonder if they still use

> > Harrington Rods or they use something else now " . Whatever made

me

> > think that, I'll never know and little did I know that in just a

> > couple of minutes I was going to enter a whole new phase of my

life

> > that I could never have fathomed in a million years. So, I

punched

> > in " Harrington Rod " in to the search box and whoa...........all

of

> a

> > sudden, I see all this stuff written by an Mina. I

> thought

> > well - who the heck is she? I kept seeing this word " flatback "

and

> I

> > kept ignoring it. Never clicked on that , because I frankly felt

> > that that didn't have anything to do with me. So, I sat there

> > mesmerized by her work and then all of a sudden, I now noticed

this

> > statemnet, " If you had Harrington Rods implanted between 19--

and

> 19-

> > -, click here as you may be suffering from a complication called

> > Flatback Syndrome " . My heart just about stopped and I actually

> cried

> > out, " No -please God, don't let this affect me " . I didn't even

know

> > anything yet, but I sensed that it was something I didn't want

any

> > part of. So, I relunctantly clicked on it and, well I am sure

that

> > you all experienced the same feeling as I. I was staring at the

> > moniter and couldn't read fast enough. Then, I reread it and

then I

> > reread it again because I then realized that I wasn't able to

read

> > it well because tears were running down my face. I sat here

> > astounded and shocked and betrayed and scared and totally,

totally

> > overwhelmed. Then, all of a sudden I heard the garage door open

and

> > my husband come up the stairs. He came into the study, shocked

that

> > I would still be up. He took one look at me and said, " What is

> > wrong " and came to my side and I just pointed to the moniter and

he

> > started to read. He just stared at me and said, " Oh my God -

honey

> > that woman looks just like you. You bend just like that and

those

> > are your symptoms " . I will never forget that moment. It was

total

> > despair. I went into a depression for a couple of weeks only

> sharing

> > what I had read with my sister who happens to be an RN. She was

> > shocked too and read all the info I printed out for her and she

> > concured with my husband. Then, when I started to tell some

> friends,

> > I kept getting the same response. " well, you can't really think

> that

> > you can diagnose yourself from something you read about online " .

It

> > was difficult to make people understand that yes I could - I

KNEW

> as

> > soon as I read that night, that I did indeed have Flatback. A

> couple

> > of weeks later, I found the Feisty site and met many of you.

That

> > October, I met with Dr. Glazer (Boston's Beth Israel) whom

I

> > had heard of and was privledged to meet at a Scoliosis Chapter

> > meeting. He concurred that I indeed had flatback, osteophyte

> > formation and spinal canal narrowing at the L5-S1 level, along

with

> > significant disc degeneration below my fusion. Because I had

been

> > experiencing neck pain for about 3 years previous to this, he

> > explained that I probably had some issue there as well. He

> concluded

> > that I also have cervical spondylosis and disc degeneration at

C5-

> C6

> > and C6-C7. That will need to addressed as well. Interestingly,

soon

> > after that appointment, like I didn't have enough to think

about, I

> > started experiencing knee problems. During the spring of this

year,

> > it became really bad. I went to see a local ortho here in my

town,

> > he has diagnosed me with " chondrocalcinosis' or " pseudogout " in

my

> > knees, no doubt directly related to the flatback. I am now in

> > physical therapy for my knees, neck and back while I try to

figure

> > out what the heck I am going to do. I am now 44 years old with a

> > 13yr old son and 17 yr old daughter. I work part-time, which

feels

> > like full-time and I feel like crap most of the time. I am going

to

> > make an appointment with Dr. Rand for a second appointment later

in

> > the year. So, that is my story for the file. I am certain that I

> > have bored some, but I must tell you that it is rather

therapeutic.

> > Everyone should try it!! Hope everyone had a wonderful weekend

and

> > once again, I am so happy to be here with all of you. We are our

> own

> > sisterhood, aren' we?

> >

> > from RI

[Guest guest]

Why don't you folks get some straws? We buy them in huge quantities!

Carole

[Guest guest]

Oh, , I am so glad you had a laugh! I've had a few here too! Thank goodness!

Carole

[Guest guest]

,

Actually, we buy them at Costco! They're cheaper there. We find them very handy for drinking coffee while driving, as well, since we have a better view of the road ahead!

Carole

[Guest guest]

Ha! Ha! Carole - At first, I read your post and I wondered who you

were replying to!!! Then, it suddenly hit me ---- I think certainly to

me in regards to my not being able to drink well out of a can!! Then,

I just started laughing out loud!! You are so right - I think I need

to stock up!!! You made me chuckle - you know what they say, sometimes

the answer is right in front of you, but you just don't see it! Thanks-

-

-

> Why don't you folks get some straws? We buy them in huge

quantities!

>

> Carole

[Guest guest]

and Carole...

If you're reading messages on the website, you can click

on " Up Thread " in the upper left-hand corner above the message you're

reading. That takes you to the previous message in the thread.

Regards,

> > Why don't you folks get some straws? We buy them in huge

> quantities!

> >

> > Carole

[Guest guest]

Geez - Don't I feel stupid now! I had never even noticed that -

Thanks!

> > > Why don't you folks get some straws? We buy them in huge

> > quantities!

> > >

> > > Carole

[Guest guest]

> > > Why don't you folks get some straws? We buy them in huge

> > quantities!

> > >

> > > Carole

[Guest guest]

I totally understand how it is hard to keep up, but I am grateful that

you put your thoughts into words.

Geez there has been so much activity on this new site that I have been

staying up too late.

I am really looking forward to meeting you in person. It will happen. I

will " see " you on the chat tomorrow. Be sure to call dibs on the

computer for nine! Ann

[Guest guest]

Hey Ann - If you are still around, I still can't get into chat. I am

panicing here thinking I won't be able to get on tomorrow night. What

do I do now?

> I totally understand how it is hard to keep up, but I am grateful

that

> you put your thoughts into words.

>

> Geez there has been so much activity on this new site that I have

been

> staying up too late.

>

> I am really looking forward to meeting you in person. It will

happen. I

> will " see " you on the chat tomorrow. Be sure to call dibs on the

> computer for nine! Ann

[Guest guest]

,

Just curious: What does "LMAO" mean?

Carole

[Guest guest]

LMAO means Laughing my Ass off

[Guest guest]

Hi, .

I just had to chime in here. So what if she deleted your post? Rather a

silly gesture. Most members would have already received it in their email.

I made that comment on the site, and mentioned that I hadn't seen any hate

mail. Interestingly, she has not deleted nor commented on my post. She

hasn't posted a word since last Friday. Probably busy on her new

subscription-only site. (roll eyes)

[ ] Re: My Story!

> Hey Dianne - Yeah, I've been meaning to ask if others got booted

> from the other board. I never " officially " asked to be removed and

> then after I just agreed with what someone else has posted (because

> I hadn't posted anything regarding what had happened and was feeling

> kind of bad, I decided to post so others knew that I supported them

> and was not in agreement AT ALL with that moderator)I went back to

> the site the enxt day and found out I was obviously kicked off, for

> a better term. Anyway, yep our posts were deleted and we were

> bounced! Good thing we are welcome here!!

>

>

>

>> Hi ,

>>

>> Thank you for posting your story, I could relate to so much

> of

>> what

>> you wrote, from the things that E.R. doctor said about your back

>> never being okay, to running every day to keep weight down, to

>> fighting exhaustion by mid-thirties and thinking everyone felt the

>> same... I even broke my tailbone, though not nearly in the

> dramatic

>> way that you did!

>> But what really hit home was how you found

>> out about your flatback condition on the internet and the

> subsequent

>> reaction; wow, you could have been relating my own experience.

>> Of course our situations are not identical, but you're right, it

>> just goes to show how related we all are in this. I'm so glad for

> a

>> site like this, it has made a world of difference in my life.

>>

>> Touching on a different topic... I managed to read your

> comment

>> to my last post on the old message board before they were both

>> deleted and I was booted from the board. You mentioned sometimes

>> feeling too paralyzed to post...

>> I just wanted to tell you that that struck such a cord with

> me

>> because I've felt like that so many times, especially since my

>> revision surgery. I'm so afraid of steering someone wrong or

> getting

>> a wrong read on things, more times than not I just give up in

>> frustration because what I want to say just won't translate from

> my

>> head to the keyboard. I just thought it was funny that you should

>> say such a thing without realizing the person it was directed to

>> feels the same way!

>> Am looking forward to how your appointment with Rand goes.

>> Keep us posted and don't freeze up on us, I'm working on that too.

>> Unless of course, everyone tells me to " shaddup already! "

>>

>> All my best, Dianne S.

>

>

>

>

>

> scoliosis vetrans * flatback sufferers * revison candidates

>

[Guest guest]

Deleted posts? LMAO.....I had one deleted (before she deleted me)

that I was thouroughly confused about, and went to her to ask about

it and who may have done it...for it was up for several days before

it disappeared. She told me I maust be confused, because all the

posts seemed to be in order with not a one missing. Hmmmmmm.......

~~

> >> Hi ,

> >>

> >> Thank you for posting your story, I could relate to so much

> > of

> >> what

> >> you wrote, from the things that E.R. doctor said about your back

> >> never being okay, to running every day to keep weight down, to

> >> fighting exhaustion by mid-thirties and thinking everyone felt

the

> >> same... I even broke my tailbone, though not nearly in the

> > dramatic

> >> way that you did!

> >> But what really hit home was how you found

> >> out about your flatback condition on the internet and the

> > subsequent

> >> reaction; wow, you could have been relating my own experience.

> >> Of course our situations are not identical, but you're right, it

> >> just goes to show how related we all are in this. I'm so glad

for

> > a

> >> site like this, it has made a world of difference in my life.

> >>

> >> Touching on a different topic... I managed to read your

> > comment

> >> to my last post on the old message board before they were both

> >> deleted and I was booted from the board. You mentioned sometimes

> >> feeling too paralyzed to post...

> >> I just wanted to tell you that that struck such a cord with

> > me

> >> because I've felt like that so many times, especially since my

> >> revision surgery. I'm so afraid of steering someone wrong or

> > getting

> >> a wrong read on things, more times than not I just give up in

> >> frustration because what I want to say just won't translate from

> > my

> >> head to the keyboard. I just thought it was funny that you should

> >> say such a thing without realizing the person it was directed to

> >> feels the same way!

> >> Am looking forward to how your appointment with Rand goes.

> >> Keep us posted and don't freeze up on us, I'm working on that

too.

> >> Unless of course, everyone tells me to " shaddup already! "

> >>

> >> All my best, Dianne S.

> >

> >

> >

> >

> >

> > scoliosis vetrans * flatback sufferers * revison candidates

> >

[Guest guest]

OK I am LMAO! I did not see Carole's question about LMAO until after I

asked about the soft collar....I didn't know what it meant either, but

as I read the question, my hubby filled me in.

[Guest guest]

LMAO at you guys!!!

> OK I am LMAO! I did not see Carole's question about LMAO until after

I

> asked about the soft collar....I didn't know what it meant either,

but

> as I read the question, my hubby filled me in.

[Guest guest]

Wow....you poor thing! Heart issues after implants are VERY common, and

I don't want to go into all of the details of what I've heard and seen

on our group, but you definitely need to find someone who will take care

of you properly. No, this is not a mental issue, and effexor is not the

answer to your problems....in fact Dr. Vliet has stated in her

book " Screaming to Be Heard " that often times women are given

antidepressants when what they really need are estrogen hormones. The

symptoms are similar but the antidepressants do not treat the root cause

of the issue!

I don't know if your issues are all hormones, but obviously there is a

large systemic problem going on with you, and you are right to question

the implants and look for someone to help you deal with this.

My suggestion is to start making the calls to a qualified explant

surgeon and make an appointment to get those implants removed as soon as

you possibly can.

We have a list of doctors that we recommend and we don't suggest these

doctors for financial gain...there is no gain for us . We recommend

these doctors because they know how to remove implants PROPERLY and they

know that women are getting ill from them, so they will treat you with

respect and compassion. It makes the explant process easier and less

frustrating because most of the time when you see a plastic surgeon,

they will say that your illness has nothing to do with your implants,

and they won't take the issue of removal for the sake of your health

seriously. But this needs to be taken very seriously! Your future is

at stake!

Proper removal of implants requires that you get not only the implants

removed, but the scar tissue surrounding the implant removed as well.

It needs to come all out, not just part of it. All of it. The term you

need to discuss with any plastic surgeon for explant is getting a " Total

Capsulectomy " , or " En bloc " removal. both of these procedures have the

same end result, just two different ways of going about getting there.

Bottom line: Your implants are out and so is anything else they may

have left behind.

Where are you located? Perhaps we can get you connected to some ladies

nearby, and if not, we can at least answer your questions about getting

those implants out and getting better.

Many of our women who have been explanted have had the same symptoms as

you and have gone on to live vibrant, full lives once again after a

period of healing. It took me 4 years to get better, but I did! I have

my life back.

It's very possible for you to get better.....hang on to that thought,

even though none of your family understands. Unfortunately, there is

very little truth being told about the dangers associated with implants

by those responsible for telling it...they have swept all of us " sick

women " under the rug and labeled us " nuts and slutz " . We are not. We are

smart women made ill by their dangerous product. Doctors offer very

little help, and if your family is prone to listen to the doctors only,

you will have an uphill struggle to be understood by them. But we are

here....we understand!!! You are not alone!

Let us know how we can help you. Your next step should be finding a

doctor to get those implants out of you correctly.

Patty

>

> hello there! i seem to be having trouble posting for some reason? so

this may be my second post. i'm sorry! i want to tell my full story to

everyone. 6 years ago i got saline breast implants. 5 or 6 weeks after

the surgery i got ill - nausea, nerve/joint/muscle pain, twitching,

trouble swallowing, etc. i went from doctor to doctor in my city

(because my family doctor thought it was all in my head). well so did

all the other doctors i saw. not one took me seriously. 6 months of

going to doctor to doctor with no success my family doctor admitted me

to the mental health unit in the hospital. i was in there for one month

where they put me on effexor. years went by with me trying to convince

my family and husband that i'm sick and it could be from the implants.

with no success. well last november i had an eposode where my hands and

feet went freezing cold, i couldn't breathe, and my heart was racing. i

was so scared and my family thought it was all in my head. i was again

admitted to the mental health unit and placed on effexor again. 3 weeks

ago it happened again but much more severe - hands and feet went

freezing cold, couldn't breathe, heart was going crazy fast. i went to a

walk in clinic and the doctor there told me to go to the hospital. i

went to the hospital and the admitted me to the cardiac unit and

relleased me the next day saying that i have tacycardia. since then my

heart rate has not gone below 100 and jumps to 160 and i have stabbing

pains where my heart is and major trouble breathing, twitching, and

burning acidy feeling in my throat all the time. i was doing some

research and came across Dysautonomia - a dysfunction of the autonomic

nervous system and i thought this sounds kinds what i have and i also

found some where on the internet that dysautonomia has been known to

occur after breast impant surgery. i'm really scared and alone at the

moment. i feel like i'm going to have to die with these implants in. i

have no one to support me at all. i'm at a utter total loss and am very

tired.

>

[Guest guest]

Thank you Patty for your lovely message.

It truely means the world to me to know that I'm not alone in

this struggle. i can't explain to you how greatful i am for your support. i'm

very tired of fighting and there are times when i just want to give up and have

no hope but this newly found support of this group gives me some strength to go

on.

i will start my explant surgeon search. do you think i should try to figure out

my heart issue before arrange explant surgery? just the thought of going into

surgery with unexplained heart issues scares me!

your friend,

antonija

-- In , " glory2glory1401 " <glory2glory1401@...>

wrote:

>

> Wow....you poor thing! Heart issues after implants are VERY common, and

> I don't want to go into all of the details of what I've heard and seen

> on our group, but you definitely need to find someone who will take care

> of you properly. No, this is not a mental issue, and effexor is not the

> answer to your problems....in fact Dr. Vliet has stated in her

> book " Screaming to Be Heard " that often times women are given

> antidepressants when what they really need are estrogen hormones. The

> symptoms are similar but the antidepressants do not treat the root cause

> of the issue!

>

> I don't know if your issues are all hormones, but obviously there is a

> large systemic problem going on with you, and you are right to question

> the implants and look for someone to help you deal with this.

>

> My suggestion is to start making the calls to a qualified explant

> surgeon and make an appointment to get those implants removed as soon as

> you possibly can.

>

> We have a list of doctors that we recommend and we don't suggest these

> doctors for financial gain...there is no gain for us . We recommend

> these doctors because they know how to remove implants PROPERLY and they

> know that women are getting ill from them, so they will treat you with

> respect and compassion. It makes the explant process easier and less

> frustrating because most of the time when you see a plastic surgeon,

> they will say that your illness has nothing to do with your implants,

> and they won't take the issue of removal for the sake of your health

> seriously. But this needs to be taken very seriously! Your future is

> at stake!

>

> Proper removal of implants requires that you get not only the implants

> removed, but the scar tissue surrounding the implant removed as well.

> It needs to come all out, not just part of it. All of it. The term you

> need to discuss with any plastic surgeon for explant is getting a " Total

> Capsulectomy " , or " En bloc " removal. both of these procedures have the

> same end result, just two different ways of going about getting there.

> Bottom line: Your implants are out and so is anything else they may

> have left behind.

>

> Where are you located? Perhaps we can get you connected to some ladies

> nearby, and if not, we can at least answer your questions about getting

> those implants out and getting better.

>

> Many of our women who have been explanted have had the same symptoms as

> you and have gone on to live vibrant, full lives once again after a

> period of healing. It took me 4 years to get better, but I did! I have

> my life back.

>

> It's very possible for you to get better.....hang on to that thought,

> even though none of your family understands. Unfortunately, there is

> very little truth being told about the dangers associated with implants

> by those responsible for telling it...they have swept all of us " sick

> women " under the rug and labeled us " nuts and slutz " . We are not. We are

> smart women made ill by their dangerous product. Doctors offer very

> little help, and if your family is prone to listen to the doctors only,

> you will have an uphill struggle to be understood by them. But we are

> here....we understand!!! You are not alone!

>

> Let us know how we can help you. Your next step should be finding a

> doctor to get those implants out of you correctly.

> Patty

>

>

>

> >

> > hello there! i seem to be having trouble posting for some reason? so

> this may be my second post. i'm sorry! i want to tell my full story to

> everyone. 6 years ago i got saline breast implants. 5 or 6 weeks after

> the surgery i got ill - nausea, nerve/joint/muscle pain, twitching,

> trouble swallowing, etc. i went from doctor to doctor in my city

> (because my family doctor thought it was all in my head). well so did

> all the other doctors i saw. not one took me seriously. 6 months of

> going to doctor to doctor with no success my family doctor admitted me

> to the mental health unit in the hospital. i was in there for one month

> where they put me on effexor. years went by with me trying to convince

> my family and husband that i'm sick and it could be from the implants.

> with no success. well last november i had an eposode where my hands and

> feet went freezing cold, i couldn't breathe, and my heart was racing. i

> was so scared and my family thought it was all in my head. i was again

> admitted to the mental health unit and placed on effexor again. 3 weeks

> ago it happened again but much more severe - hands and feet went

> freezing cold, couldn't breathe, heart was going crazy fast. i went to a

> walk in clinic and the doctor there told me to go to the hospital. i

> went to the hospital and the admitted me to the cardiac unit and

> relleased me the next day saying that i have tacycardia. since then my

> heart rate has not gone below 100 and jumps to 160 and i have stabbing

> pains where my heart is and major trouble breathing, twitching, and

> burning acidy feeling in my throat all the time. i was doing some

> research and came across Dysautonomia - a dysfunction of the autonomic

> nervous system and i thought this sounds kinds what i have and i also

> found some where on the internet that dysautonomia has been known to

> occur after breast impant surgery. i'm really scared and alone at the

> moment. i feel like i'm going to have to die with these implants in. i

> have no one to support me at all. i'm at a utter total loss and am very

> tired.

> >

>

[Guest guest]

Hi Antonija,

All the women here know exactly how you have felt, so you are among sisters! :

)

Honestly, as far as your heart issues go, I cannot tell you what to do, but I

can tell you that other women have been explanted and also had a 2nd surgery to

remove scar tissue that had been left behind with some heart issues. What those

heart issues are and how different they are from yours, I have no clue. But I

do know, for instance, one girl named Kristi (whose story is in our file section

and which I will post) talked about having had a heart attack even! She got

explanted and has since recovered fully, finished college, got married, and had

a baby. So, I know women with " heart issues " have been able to undergo explant

surgery and come out fine.

It is up to the explanting surgeon, so I would begin that search now and let the

doctors make the decisions. But please be sure to use a doctor that KNOWS how to

explant properly and who has dealt with sick women before so they know what to

expect during the surgery and recovery. I would recommend these doctors, based

on their expertise with women who are sick from implants, and acknowledge that

fact:

Dr. Lu Feng, Cleveland, OH

Dr. Kolb, Atlanta, GA

Dr. Huang, Denver, CO

Dr. Ed Melmed, Dallas, TX

If you can go to one of these doctors, you won't have to plead your case....they

will know what you need. Otherwise, going to other plastic surgeons who believe

that implants are safe can lead to frustrations as they try to talk you into

keeping your implants, telling you that they are safe, they are not making you

sick, and/or that you will look deformed if you remove the implants. So many of

the women on our group have experienced insult, ridicule, brushing off, and not

being taken seriously by plastic surgeons who don't have experience with

explant. They sure like to put implants in, but when it comes to taking them

out, watch out. That's why we like the doctors listed above....they sincerely

understand our predicament.

So, yes, start making the moves needed to get explanted now. It is your hope of

getting better, at this point, with the most promise.

Take care,

Patty

> > >

> > > hello there! i seem to be having trouble posting for some reason? so

> > this may be my second post. i'm sorry! i want to tell my full story to

> > everyone. 6 years ago i got saline breast implants. 5 or 6 weeks after

> > the surgery i got ill - nausea, nerve/joint/muscle pain, twitching,

> > trouble swallowing, etc. i went from doctor to doctor in my city

> > (because my family doctor thought it was all in my head). well so did

> > all the other doctors i saw. not one took me seriously. 6 months of

> > going to doctor to doctor with no success my family doctor admitted me

> > to the mental health unit in the hospital. i was in there for one month

> > where they put me on effexor. years went by with me trying to convince

> > my family and husband that i'm sick and it could be from the implants.

> > with no success. well last november i had an eposode where my hands and

> > feet went freezing cold, i couldn't breathe, and my heart was racing. i

> > was so scared and my family thought it was all in my head. i was again

> > admitted to the mental health unit and placed on effexor again. 3 weeks

> > ago it happened again but much more severe - hands and feet went

> > freezing cold, couldn't breathe, heart was going crazy fast. i went to a

> > walk in clinic and the doctor there told me to go to the hospital. i

> > went to the hospital and the admitted me to the cardiac unit and

> > relleased me the next day saying that i have tacycardia. since then my

> > heart rate has not gone below 100 and jumps to 160 and i have stabbing

> > pains where my heart is and major trouble breathing, twitching, and

> > burning acidy feeling in my throat all the time. i was doing some

> > research and came across Dysautonomia - a dysfunction of the autonomic

> > nervous system and i thought this sounds kinds what i have and i also

> > found some where on the internet that dysautonomia has been known to

> > occur after breast impant surgery. i'm really scared and alone at the

> > moment. i feel like i'm going to have to die with these implants in. i

> > have no one to support me at all. i'm at a utter total loss and am very

> > tired.

> > >

> >

>

[Guest guest]

Hi,

I just wanted to add that I have been diagnosed with Dysautonomia, and

Neurocardiogenic Syncope - both by my cardiologist. I had seen many dr's before

that, and had many heart " episodes " until finally getting some relief. Never

had heart problems until implants.

These diagnoses were just added to the otherwise long list -- but I did get some

relief from the heart racing, and heart palpitations by taking Co-Enzyme Q-10

every day. It's not a prescription, it's natural, but you may want to ask the

pharmacist about it. It's really helped me, to regulate my heartbeat.

I'll post after my explant whether or not I still have the heart symptoms.

Explant scheduled for next month.

And one more thing -- VERY IMPORTANT in my own personal story - might help you.

The main triggers for my racing heart and palpitations were fragrances,

cleaners, scented lotions, pesticides and other chemicals. Switching to all

natural unscented products helped EVERYTHING at least a little bit.

Hugs to you - I know how scary it is. There is hope!

Alyssa

[Guest guest]

Hi Patty,

Thank you so much for your message! you have given me such hope!!

kristi's story is truely amazing and inspiring! i'm 26 years old and hope to

have children soon and to hear that she was able to do that and other things

gives me hope! i'm going to start to see what it takes to get into those

doctors you listed. i'm from canada so it may more complicated. i can't wait to

get started. i don't know how to thank you and the other women for all your

help and support! you all have been absoutlely amazing! i don't feel alone now.

thank you.

x antonija

> > > >

> > > > hello there! i seem to be having trouble posting for some reason? so

> > > this may be my second post. i'm sorry! i want to tell my full story to

> > > everyone. 6 years ago i got saline breast implants. 5 or 6 weeks after

> > > the surgery i got ill - nausea, nerve/joint/muscle pain, twitching,

> > > trouble swallowing, etc. i went from doctor to doctor in my city

> > > (because my family doctor thought it was all in my head). well so did

> > > all the other doctors i saw. not one took me seriously. 6 months of

> > > going to doctor to doctor with no success my family doctor admitted me

> > > to the mental health unit in the hospital. i was in there for one month

> > > where they put me on effexor. years went by with me trying to convince

> > > my family and husband that i'm sick and it could be from the implants.

> > > with no success. well last november i had an eposode where my hands and

> > > feet went freezing cold, i couldn't breathe, and my heart was racing. i

> > > was so scared and my family thought it was all in my head. i was again

> > > admitted to the mental health unit and placed on effexor again. 3 weeks

> > > ago it happened again but much more severe - hands and feet went

> > > freezing cold, couldn't breathe, heart was going crazy fast. i went to a

> > > walk in clinic and the doctor there told me to go to the hospital. i

> > > went to the hospital and the admitted me to the cardiac unit and

> > > relleased me the next day saying that i have tacycardia. since then my

> > > heart rate has not gone below 100 and jumps to 160 and i have stabbing

> > > pains where my heart is and major trouble breathing, twitching, and

> > > burning acidy feeling in my throat all the time. i was doing some

> > > research and came across Dysautonomia - a dysfunction of the autonomic

> > > nervous system and i thought this sounds kinds what i have and i also

> > > found some where on the internet that dysautonomia has been known to

> > > occur after breast impant surgery. i'm really scared and alone at the

> > > moment. i feel like i'm going to have to die with these implants in. i

> > > have no one to support me at all. i'm at a utter total loss and am very

> > > tired.

> > > >

> > >

> >

>

[Guest guest]

Hi Alyssa!

Thank you so much for your message! i'm going to pick up Co-Enzyme Q-10 right

away! i can't wait to give it a try.

what were your main symptoms of Dysautonomia & Neurocardiogenic Syncope ? how

long have you had implants? i'm soo happy that you have your explant next month

- that's great news! you must be very excited. good luck! it will go amazing!

does your surgeon have to use different anathestic (spelling) because of your

Dysautonmia?

Hugs to you!!!

antonija

ps i'm going to switch to all unscented products asap- thanks for your great

advice!

>

> Hi,

> I just wanted to add that I have been diagnosed with Dysautonomia, and

Neurocardiogenic Syncope - both by my cardiologist. I had seen many dr's before

that, and had many heart " episodes " until finally getting some relief. Never

had heart problems until implants.

>

> These diagnoses were just added to the otherwise long list -- but I did get

some relief from the heart racing, and heart palpitations by taking Co-Enzyme

Q-10 every day. It's not a prescription, it's natural, but you may want to ask

the pharmacist about it. It's really helped me, to regulate my heartbeat.

>

> I'll post after my explant whether or not I still have the heart symptoms.

Explant scheduled for next month.

>

> And one more thing -- VERY IMPORTANT in my own personal story - might help

you. The main triggers for my racing heart and palpitations were fragrances,

cleaners, scented lotions, pesticides and other chemicals. Switching to all

natural unscented products helped EVERYTHING at least a little bit.

>

> Hugs to you - I know how scary it is. There is hope!

> Alyssa

>