New here

March 29, 2005

Thanks . I will definitely check out that book - loves

Sesame Street.

How old is Aedan and has he had any surgeries yet? I think I'll check

out the many pics posted here when I have a break at work.

Joy

> Hello Joy

> I think your idea is a good one. I have been reading a Sesame

Book to

> Aedan called , we are all the same we are all different. It is a good

book to

> give visuals to what you are saying. There are even Asian eyes that

Aedan says

> are his shape (we are not Asian) I have the book in paper back.

Welcome

> back to the group.

March 29, 2005

Was Aedan diagnosed right away? At birth had one eye that

didn't open as far the the other but after a few weeks she was able to

open it further. We were referred to the ped. opthamologist pretty

much in the first month and we went in every three months at first.

Now we go every six months just to make sure 's vision is still

OK. She may have a slight astigmatism, but her vision is fine.

We're in Minnesota. However, when the time comes, we will go anywhere

to have 's surgery done by a surgeon who has done this type of

sugery before. I'm hoping to get some names so we can start

researching drs sometime this year. Did you like Aedan's first

surgeon? Is it the same one for tomorrow? Please let me know if you

are happy with the results once it and the healing time are over.

Joy

> Hi Joy

> Aedan is 2. He'll be three in June. He had ptosis surgery when

he was

> 10 weeks. He is scheduled for eye surgery tomorrow. The doc thinks

that

> strabismus might have been caused by the lack of sight his first few

weeks. Where

> are you and ?

April 8, 2005

Hi,

My pain started in my lower back and I ignored it not knowing that it was the implants. My rib pain started much later and so did the pain under my ribs. I know today that all of the pain was and is associated with my implants.

As time went on I ached all over and was diagnosed with Fibromyalgia and chronic fatigue. I'm not a doctor but I would be willing to guess that it is your implants. I don't want to scare you but it is better to know than not.

Good luck to you and if you have any other questions just ask.

Beth S. kwalker4359 <kiwfor3@...> wrote:

I've had saline under the muscle size C implants for 15 months...I have had awful back pain and pain all the way around where bra strap is....I'm on muscle relxers now...sometimes I feel bruised in my ribs and in my armpits hurt...I don't want to explant but I can't deal with the pain....why is it like this ? Is it just muscle pain or could my implant be on a nerve ? This is awful.....I feel like I have been beatin up. I ache all over. Opinions expressed are NOT meant to take the place of advice given by licensed health care professionals. Consult your physician or licensed health care professional before commencing any medical treatment. "Do not let either the medical authorities or the politicians mislead you. Find out what the facts are, and make your own decisions about how to live a happy life and how to

work for a better world." - Linus ing, two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace)

April 8, 2005

Dearest Friend:

Please have an ultrasound as soon as possible. I had silicone breast

implants, and my chest wall is so damaged that I can only sit for short

periods of time. In my opinion your body does not like the implants. Saline

breast implants are not safe and many women are very sick from them.

Good luck and please stay with us...Love...Lea

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~```````````````````````

New here

>

> I've had saline under the muscle size C implants for 15 months...I have

> had awful back pain and pain all the way around where bra strap

> is....I'm on muscle relxers now...sometimes I feel bruised in my ribs

> and in my armpits hurt...I don't want to explant but I can't deal with

> the pain....why is it like this ? Is it just muscle pain or could my

> implant be on a nerve ? This is awful.....I feel like I have been

> beatin up. I ache all over.

>

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

> licensed health care professionals. Consult your physician or licensed

> health care professional before commencing any medical treatment.

>

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

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

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

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

>

April 8, 2005

Are you wearing a bra that has really good support?

Wide back band? Wide shoulder straps? Maybe these

would help.

It's hard to tell from what you've said why you're

having so much pain otherwise. Do you feel flu-like?

Fever? rash? headaches? mental fogginess?

Read over the list of symptoms women with breast

implants can have. . . I don't know anyone who has all

of them. The thing you need to know is that

complications from breast implant are not confined

just to the breast area.

You might try soaking in a hot tub with Epsom salts.

Then, do gentle stretches to release those muscles

like Yoga movements.

If you can't get rid of the pain, then you may want to

consider explanting. If this is the beginning of a

reaction, it could get much worse.

Hugs and prayers,

Rogene

--- kwalker4359 <kiwfor3@...> wrote:

>

> I've had saline under the muscle size C implants for

> 15 months...I have

> had awful back pain and pain all the way around

> where bra strap

> is....I'm on muscle relxers now...sometimes I feel

> bruised in my ribs

> and in my armpits hurt...I don't want to explant but

> I can't deal with

> the pain....why is it like this ? Is it just muscle

> pain or could my

> implant be on a nerve ? This is awful.....I feel

> like I have been

> beatin up. I ache all over.

>

April 8, 2005

Hi there

I also had salines under the muscle for 7 years.... I had the same exact pain you have described. It was later found out upon removal that the implants were stuck to my ribs which sparked pain due to scar tissue growing there as well as a condition call costochrondritis which is a swelling of the rib cartilage. It is very painful. If you have salines, chances are they may be leaking which will lead to contamination ... this leads the rib cartilage infections which moves on and caused the other apins you have described.

Also, the implant under the muscle, in my case, caused muscle and nerve damage in my chest and underarms due to the way they are placed. They have to pull your chest muscle off your ribs and shove the implants in... sometimes it isn't done in the gentlest way....

You can ready my story at

www.BreastImplantAwareness.org/shari.htm

This will explain is a lot more detail all of my symptoms and illnesses which may help you understand what may be going on with you as well. My pain started in my back and neck also. The other pain you are describing sounds to me likes the beginnings of fibromyalgia where there is pain all over for no reason-joint and muscle pain and chronic fatigue. You may want to check some of the other studies out that are linked to my page as well as on the support group site for a better understanding of what may be happening to you.

good luck and god bless!!!

please let me know if I can help!

I hope this helps

April 8, 2005

Have you considered getting a second or third opinion from a surgeon

other than the one who put the implants in? We have found a number of

surgeons who do believe that the implants cause problems, including

problems at the surgical sites themselves. My body refused to accept

the implants, but I did not have the severe pain that you are

having. I am so sorry you are hurting. It is not normal, and it does

sound related to the implants. I hope you will continue to share your

experience with us. Sending good thoughts your way...

April 9, 2005

I'm curious then, is it better that they are over the muscle? I had

saline implants in 98 and specified very clearly to the surgeon (a

real jerk) that I wanted them under the muscle..I wrote it on the

consent form, and prior to being anesthesized I told him to be certain

to put under the muscle. Well a year later when I had my mammogram I

found out they were over the muscle. I was furious then, and went to

see him and he started playing dumb...I showed him the xray from the

mammogram and he said he didn't know how to read the mammorgram and if

I paid $1000 he would have a radiologist friend of his read it.....I

thought he was going crazy, it was obvious he thought I would sue

him....I can't believe I even went to him in the first place. Anyway,

I wonder now if he did me a favor or not by putting them over the

muscle? I would appreciate hearing from anyone. I am scheduled for

June 6 explant with Dr. Melmed, I am flying up for my consultation on

April 29.

> Hi there

>

> I also had salines under the muscle for 7 years.... I had the same

exact pain

> you have described. It was later found out upon removal that the

implants

> were stuck to my ribs which sparked pain due to scar tissue growing

there as

> well as a condition call costochrondritis which is a swelling of the

rib

> cartilage. It is very painful. If you have salines, chances are

they may be leaking

> which will lead to contamination ... this leads the rib cartilage

infections

> which moves on and caused the other apins you have described.

> Also, the implant under the muscle, in my case, caused muscle and nerve

> damage in my chest and underarms due to the way they are placed.

They have to pull

> your chest muscle off your ribs and shove the implants in...

sometimes it

> isn't done in the gentlest way....

>

> You can ready my story at

> www.BreastImplantAwareness.org/shari.htm

>

> This will explain is a lot more detail all of my symptoms and

illnesses which

> may help you understand what may be going on with you as well. My pain

> started in my back and neck also. The other pain you are describing

sounds to me

> likes the beginnings of fibromyalgia where there is pain all over

for no

> reason-joint and muscle pain and chronic fatigue. You may want to

check some of the

> other studies out that are linked to my page as well as on the

support group

> site for a better understanding of what may be happening to you.

>

> good luck and god bless!!!

> please let me know if I can help!

>

> I hope this helps

April 10, 2005

just my humble opinion - now that you have decided to have the explant,

I believe the over the muscle will be much easier for you. I had

saline implants in 98, and they were over the muscle. I think it takes

less time, and there may be less bleeding. Also, I would think if the

muscle had been stretched by the implants being under them, wouldn't

the muscle pain be worse when the implants were removed, and thus more

difficult? I'm sure some of our sisters here will tell you. Best

wishes....Jackie

April 10, 2005

Honey, I had my silicone under the muscle and in my opinion women who have

these devices under the muscle seem to be much sicker. If I am wrong,

perhaps someone else could comment.

Good luck...love...Lea

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~````````````````````````

Re: New here

>

> I'm curious then, is it better that they are over the muscle? I had

> saline implants in 98 and specified very clearly to the surgeon (a

> real jerk) that I wanted them under the muscle..I wrote it on the

> consent form, and prior to being anesthesized I told him to be certain

> to put under the muscle. Well a year later when I had my mammogram I

> found out they were over the muscle. I was furious then, and went to

> see him and he started playing dumb...I showed him the xray from the

> mammogram and he said he didn't know how to read the mammorgram and if

> I paid $1000 he would have a radiologist friend of his read it.....I

> thought he was going crazy, it was obvious he thought I would sue

> him....I can't believe I even went to him in the first place. Anyway,

> I wonder now if he did me a favor or not by putting them over the

> muscle? I would appreciate hearing from anyone. I am scheduled for

> June 6 explant with Dr. Melmed, I am flying up for my consultation on

> April 29.

>

>> Hi there

>>

>> I also had salines under the muscle for 7 years.... I had the same

> exact pain

>> you have described. It was later found out upon removal that the

> implants

>> were stuck to my ribs which sparked pain due to scar tissue growing

> there as

>> well as a condition call costochrondritis which is a swelling of the

> rib

>> cartilage. It is very painful. If you have salines, chances are

> they may be leaking

>> which will lead to contamination ... this leads the rib cartilage

> infections

>> which moves on and caused the other apins you have described.

>> Also, the implant under the muscle, in my case, caused muscle and nerve

>> damage in my chest and underarms due to the way they are placed.

> They have to pull

>> your chest muscle off your ribs and shove the implants in...

> sometimes it

>> isn't done in the gentlest way....

>>

>> You can ready my story at

>> www.BreastImplantAwareness.org/shari.htm

>>

>> This will explain is a lot more detail all of my symptoms and

> illnesses which

>> may help you understand what may be going on with you as well. My pain

>> started in my back and neck also. The other pain you are describing

> sounds to me

>> likes the beginnings of fibromyalgia where there is pain all over

> for no

>> reason-joint and muscle pain and chronic fatigue. You may want to

> check some of the

>> other studies out that are linked to my page as well as on the

> support group

>> site for a better understanding of what may be happening to you.

>>

>> good luck and god bless!!!

>> please let me know if I can help!

>>

>> I hope this helps

>

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

> licensed health care professionals. Consult your physician or licensed

> health care professional before commencing any medical treatment.

>

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

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

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

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

>

April 10, 2005

I guess all my questions and doubts will be resolved hopefully with my

consultation with Dr.M on 4/29. But if anyone has any thoughts

meantime, I appreciate hearing.

--- In , " crazycanoe1 " <crazycanoe1@d...>

wrote:

>

> just my humble opinion - now that you have decided to have the explant,

> I believe the over the muscle will be much easier for you. I had

> saline implants in 98, and they were over the muscle. I think it takes

> less time, and there may be less bleeding. Also, I would think if the

> muscle had been stretched by the implants being under them, wouldn't

> the muscle pain be worse when the implants were removed, and thus more

> difficult? I'm sure some of our sisters here will tell you. Best

> wishes....Jackie

April 11, 2005

Overs or unders, I don't know which is worse in the

long haul . . . I guess it depends on a number of

factors beside the position.

However, overs have to be less pain going in and

easier to take out!

Thank your blessings . . . even if your PS was a total

jerk!

Hugs,

Rogene

April 11, 2005

I would defiantly say he did you a favor by going over the muscle - others here may not agree but when implants are under the muscle, the muscles have to be cut and stretched ... the also make for a much tougher removal as they have to get under the muscles again and in my case, the implants adhered to my ribs and it took a long time and a lot or work and scraping to get them removed. Of course this is just my opinion and my original surgeon was the ultimate jerk and I had to go through two additional surgeries with him in 3 years to fix complications and ruptures. I went elsewhere to have them removed and was very pleased w/ his work. One thing I did notice is that after the original implantation in 96 my muscles never felt normal again while moving my arms or lifting - now after 4 surgeries I have permanent damage there as he used the armpit incision and damaged my nerves and muscles.... I sincerely wish I had not done it at all knowing what I know now, but of course were I to go back not knowing what I know now I would choose over the muscle for sure. I think you will find your explant to be much less intrusive and you will heal faster with less pain as they are not yanking and tearing your muscles to get them out.

shari

April 11, 2005

Hello Joy,

Im Clare from UK. I have just got back from holiday in Florida, so trying to wade through my messages, I havent got to the end of the list yet, so am not sure what the others have replied - with all excellent advice.

Me and my daughter (age 9) are the only people in our family with BPES, these are some of our experiences. I find it easier to talk to my daughter about the problems, teasing and stares than my husband does, that could of course just be a man women thing in our family. I have 2 children a boy who doesnt have and a my girl of 9 who does have BPES. Both of our children and confident and happy and deal with most things well. Even though my son comes home with more stories of children 'hurting his feelings' than my daughter does!

She was about 3 years old too when I noticed the stares in the playground, i was surprised it was that early as I didnt realise any difference until I went to school. However I do wish my parents had forwarned me I was slightly different.

I have always been completely honest with my daughter and have taught her to be herself in every situation - this means people get to know her quickly and soon forget about her eyes. What you are thinking about discussing with your daughter is excellent, we had children around us at the age of 3, in chairs, and with learning difficulties so their examples helped a lot.

A smile goes a long long way too - we taught our daughter to smile at new people, then they start to look a her smile rather than her eyes ( I know as her mother its the last thing you want to do because you want to be cross - but it does work) With younger children we explained she has smaller eyes and had to have an operation in hospital to help her, they are interested, thats why they are looking. And she will soon follow your example and start to discuss her eyes as a part of life.

An example for you, when we were just in Florida on holiday, the man who was passing out the strollers in the park, was staring at my daughter, she started to explain about her eyes and having an operation etc etc. he said acutally I was just looking at your face its so pretty you should be in the movies when you look as unique as you do. I was a very proud mummy of my daughter i can tell you. There are some days when she just doesnt want to discuss and gets me to do it, or just walks away- thats fine, but the days of people staring is getting fewer and fewer. Understanding something we dont already know about is the key. The only way people can understand is by having knowledge, and its people like us talking and explaining that gives the others understanding. It means the next time they see someone with BPES they will remember the conversation and what is involved and maybe, hopefully, explain to someone else.

Anyway I hope this helps in a small way, and welcome back.

Clare Teale

UKJoy <joybdean@...> wrote:

Hi Beth,Thanks for your input. It's nice to hear something from someone who has been there and done that. My husband doesn't really say too much about what it was like when he was a child. has not had any surgery yet. We think she might have some levator muscle in her eyelids, vs my husband who didn't have any, because while the eyelid still does not have the crease or roll up, she does seem to have some control. Of course, the drs won't know until they are in there during the surgery. The eyelids just hit the top of her pupils so she hasn't had the head tilting either. And the skin folds at the corners doesn't seem too bad either. My husband says his was worse. He isn't happy with the results of his surgeries (two, the corner work and the sling) so he's leaning toward waiting longer for 's surgery. Of

course, his surgery was 22 years ago -I'm sure they've come a long way since then. I think we will start the hunt for a good surgeon in the next year. We talked to only one surgeon when was less than a year old and he said he would do the sling and wait for the corner work - I think that's opposite the normal routine and wonder if he knew what he was talking about. Given my husband's unhappiness with his surgeries (he has tearing problems, bad scarring, etc.), we will definitely want a surgeon who has done this before.Thanks again for your input. I'll have to check out the pics.Joy> > > > > > Hello,> > > > I actually found this board a couple years ago, but there was very> > little action. The other day I decided to look again and I

couldn't> > believe it :-)> > > > My husband and my 3 yr old daughter have bleph. My husband was the> > first in his family to have it and 20 some years ago, when he had > the> > sling surgery, he was told it was a fluke condition. We did not know> > it was genetic until our daughter was born with it. has been> > seeing a pediatric opthamologist since she was born and her sight is> > fine, so I think any surgery will be off a couple years.> > > > For now my questions aren't surgery related. A couple weeks ago, we> > were at a storytime in a local library and there were three girls> > sitting in front of us. The leader was reading a book and asking> > questions, which my daughter was answering along with many of the> > other children. The three girls kept turning around and looking at> > and then

she turned to me and asked why they kept staring at> > her. I was caught a bit off guard and said it was probably because > she> > knew all of the answers, but I'm pretty sure it was because of her> > eyes. I knew this day would come, but I thought it wouldn't be until> > she was in school, and now I'm finding myself unprepared and in a > rush> > to become prepared. So, I'm trying to find a way to start talking > with> > her about it. Basically, I want to give her ways to respond to the> > looks (and the teasing that will surely come her way) and I want her> > to know, really know, that she is a beautiful girl and nothing > anyone> > says will ever change that.> > > > I thought for now, since she's only three, I could start by talking> > about how people look different - different color hair, different> >

color skin, different eye shape, etc. Sure, she knows this already,> > but we've never really talked about it past her comments about how> > that little girl has the same hair or that little girl doesn't. > > > > Any suggestions would be greatly appreciated and I look forward to> > corresponding with all of you.> > > > Thanks, Joy

April 18, 2005

Hi Sandy,

I can't help you, I am feeling crappy myself. I want to Welcome you. I

am new at speaking up but finding more comfort in sharing myself some.

Best Wishes through your RA Journey.

Hugs, Peggy

" The only difference between a weed and a flower is judgment "

- Author Unknown

[ ] New here

Hello,

I am new here and hope to be able to provide support as well as get

some for myself. I was diagnosed with RA in November of last year and

feel like I am at the end of my rope. I am only 33 and have 3 small

children and am in so much pain. The medications the doctor has put me

on do little to help me and just 3 days agoe I went off the

prednisone. I am also having trouble losing weight and decided that

there has to be another medication I can take that will not hinder my

weight loss. I was just at the doctor today armed with lots of

information about the RA as well as Lupus and he just poo pooed me and

sent me out the door. He did though want me to have my hands and feet

xrayed which I had done right after my appointment.

What I really need to hear from some of you is how you cope on a daily

basis with all the pain. I am just so tired of feeling crappy. i do

not even want to get out of bed some days.

I hope to hear from some of you and look forward to meeting and

hearing your stories.

Take Care

sandie

April 19, 2005

Sandie,

I don't know how other people do it, but I start every day as soon as

I wake up, asking God to give me what I need for the day. I don't

know what I would do without Him. I am a real believer in prayer, in

leaning on Jesus for my every need. The book of Psalms has been a

great encouragement to me- I've just about worn out that book in my

Bible over the years. I have raised 4 kids (and a few strays) and

have one left at home. If you don't feel comfortable with your doc,

why don't you do some checking around for another rheumy in your

area? Do you think your doctor truly realizes how bad you feel, and

how much pain you are in? It does take time to hit on the right

combination of meds, or it did in my case.

Try to rest when you can, take a look at your priorities and

activities to see what is necessary, what things you can say no to,

and if there are some things that can wait a bit. There are little

things that keep me going- a bulletin board here at the office with

pictures of my kids & people I admire (Dr. King, Mother ,

grandbabies.) E mails from good friends, taking a minute for a cup of

tea and maybe a little chocolate ) And a quote i have on my

computer- " appreciate every moment of life because even in your

darkest moment God is with you. Lord, I know that when things become

too difficult for me, you will take my burden and carry me. I am not

afraid. " I hope this helps in some small way. Know that you are not

alone, and that you will be cared about in this group.

God bless

jane

>

> Hello,

>

> I am new here and hope to be able to provide support as well as get

> some for myself. I was diagnosed with RA in November of last year

and

> feel like I am at the end of my rope. I am only 33 and have 3 small

> children and am in so much pain. The medications the doctor has put

me

> on do little to help me and just 3 days agoe I went off the

> prednisone. I am also having trouble losing weight and decided that

> there has to be another medication I can take that will not hinder

my

> weight loss. I was just at the doctor today armed with lots of

> information about the RA as well as Lupus and he just poo pooed me

and

> sent me out the door. He did though want me to have my hands and

feet

> xrayed which I had done right after my appointment.

> What I really need to hear from some of you is how you cope on a

daily

> basis with all the pain. I am just so tired of feeling crappy. i do

> not even want to get out of bed some days.

> I hope to hear from some of you and look forward to meeting and

> hearing your stories.

>

> Take Care

> sandie

April 20, 2005

Dear Sandie,

Its is hard Im 32 and found out about my RA a year ago. I have 4 kids ages

5-11. We had them in 6 years one on top of the other. I have felt crappy for

several years to be told get a job your bored at home with the kids. BORED I

figured she had not a single child at home and if she did she probably has a

nanny raising it. I homeschool my 4 kids and I know some days I can hardly get

out of bed. But Jesus is my strength and comfort and without Him I am useless.

Hope is what will keep you going and faith that it will get better. Faith is

beleiving in something that has no evidence of proof. Some days I wake up and

there is no proof I will get up. Faith and hope keeps me going. And beleiving in

heaven where there is no tears, no pain, no sorrow, no sickness. Someday I will

be without this RA> Praise the Lord. I will be praying for you. If you need to

talk. Just writeme. God Bless. Latisha

latishavallone@...

JANE <janeatregis@...> wrote: