Please help

July 8, 2004

I was told that if you have BPES then there is a 50/50 chance that you will

pass it on. In my family that rings true. BPES has been passed down for

generations in my family. I have passed it on to 2 of my children. I'm not

exactly sure how far back it goes in my family, but i do know that my

grandfather's father had it and so did his twin brothers. That's as far

back as i know. My grandfather has it, passed it on to my father, who

passed it on to me, and i passed it on to 2 of my 3 sons. My brother

doesn't have it and neither do any of his 3 children, and my half sister

doesn't have it and neither do her 2 kids.

July 8, 2004

,

> I was told that if you have BPES then there is a 50/50 chance that you will

> pass it on.

I was also told that, by genetic counsellors. There appears to be two

distinct camps in the BPEI genetics world: the " 50/50 " camp, and the

" (100 or 96.5)/(0 or 3.5) " camp. I don't know which one to believe. I

just don't have any references, in my puny collection, to scholarly

articles supporting the 50/50 camp that I can point folks to. I'm sure

they exist, but I don' got none o' dem.

> In my family that rings true. BPES has been passed down for

> generations in my family. I have passed it on to 2 of my children.

Which also gives me pause to question some of the " experts " who claim

that (a) females with BPES are generally infertile due to ovarian

failure at an early age, and ( males with Type I have sons, while

males with type II have daughters.

> I'm not

> exactly sure how far back it goes in my family, but i do know that my

> grandfather's father had it and so did his twin brothers. That's as far

> back as i know. My grandfather has it, passed it on to my father, who

> passed it on to me, and i passed it on to 2 of my 3 sons. My brother

> doesn't have it and neither do any of his 3 children, and my half sister

> doesn't have it and neither do her 2 kids.

(I assume she shares the " father " half with you?)

Very interesting indeed. I'm sure " doesn't have it " really means that,

rather than " doesn't appear to have it " , since its absence in certain

arms of the family seems quite thorough.

It's all too hard, this genetics thing. I'll run away and hide for a while.

Rob

July 8, 2004

Rob,

Yes, my half sister and i have the same father.

July 9, 2004

,

Of course, I forgot to mention that my (full) sister (bang goes one

theory) doesn't have BPEI (oops, there goes the other one). So those

'penetrance' and Type-versus-child-gender claims of the 'experts' are

shot to pieces in my own family too, making the 50% number look pretty good.

Rob

Feichtner wrote:

> Rob,

>

> Yes, my half sister and i have the same father.

>

July 10, 2004

Hi all... my computer has been packing a bit of a wobbly so i have just had the chance to reply to this... My partner and i.. nor either of our parents or grandparents have BPES.. and out of three of our children the last one was to get it. We were told by genetics in Auckland that 1 in 4 children we have would have it. But no chance of any more in this generation anyway.. I am well past having any more!!!

blepharophimosis please help

just wondering if anyone has any advice for me, my sons father is now having a baby with his new wife and is freaking out and is freaking her out by now not believing me about when i tll him that their baby cannot have BPES, (he does not have it, our son is the only one) he has come to the genetisist with me and found out all about it but all of a sudden does not believe what the doctor has said. if anyone has any advice on what i should tell him it would really help me out. i have already referred him to any web site i could find

July 10, 2004

>or does

> " penetrance " mean something other than what I think it means?

Rob, yes, " penetrance " does mean something else:

BPES can be inherited as an autosomal dominant condition with 50% recurrence

risk to each offspring that the mutated gene will be passed on.

The fact that BPES is regarded to have a high penetrance of 96-100% means

that if you carry the mutated gene you will almost always show the typical

signs (it does not mean that you will pass it on with a 96-100% chance).

Some cases of " incomplete penetrance " have been reportet in BPES Type2, wich

means that the patients did not show the typical signs of BPES but still

carried the mutated gene (and as it is an autosomal dominant gene have a 50%

chance to pass it on.....).

This is why the only way to find out whether you have BPES or not is a

genetic testing (even if you do not show the typical signs).

By the way: approx. 50% of BPES cases accour as a spontanious mutation,

meaning that it was not inherited.

Sorry for my bad English, I partly had to translate this stuff from German.

Anja

>From: Rob <rawatson@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: Re: blepharophimosis please help

>Date: Thu, 08 Jul 2004 22:27:02 +1000

>

>Hey Shireen,

>

>Andy Bowles & Shireen Mohandes wrote:

> > Hi Rob

> > Your sentence " And it's almost always passed on. " is a bit ambiguous.

>There

> > are many people who have BPES and have not inherited it (for example,

> > myself).

>

>Oops, sorry about that. Quite right, it was indeed ambiguous, I didn't

>mean " if you have it, it was passed on " , I meant " if you have it, you'll

>pass it on " . A very different thing!

>

> > People with BPES are able to have children who don't have BPES.

> > (well documented in medical literature).

>

>So, it's literature at 50 paces. Oley & Baraitser, among others, say

>BPES has " complete penetrance in type I and slightly reduced penetrance

>in type II " which I assume means one will (pretty much) always pass it

>on. Others give that " slightly reduced " figure as 96.5%. Not

>inconsistent with your " are able to " claim, but at a rate of 0% (Type I)

>+ 3.5% (Type II) I'd be inclined to add " if REALLY lucky " . Or does

> " penetrance " mean something other than what I think it means?

>

>But with such a rare syndrome, and therefore such sparse statistics,

>there are bound to be some anomalies in the numbers that researchers use.

>

> > I certainly agree with your point that in some people it is so mild that

>it

> > goes undetected. I have heard that from people in the medical

>profession.

>

>One doesn't need to be in the medical profession to see that. But it's

>well documeented there, nonetheless. Oley & Baraitser again: " In three

>pedigrees, parents who obviously carried the gene were unaffected. "

>

>Rob

_________________________________________________________________

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February 8, 2005

,

Talk with (goingtolunch). She told me about the

new surgery they are doing to transfer fatty tissue!

It used to have a frequent failure rate, but it's very

successful now!

Hugs,

Rogene

February 8, 2005

Tammy,

I'm thrilled you are doing so much better! . . .And I'm also elated that you went back to your doctor and showed him! . . . I wonder if he will tell the next woman that it's all in her head?

Sometimes I think there is a conspiracy among the Rheumy's to deny the problem. . .

Do you think you could get a friend to call his office anomonously and ask if he understands the problem with implants and treats women who have them?

Just curious!!!

Hugs,

Rogene

February 8, 2005

Dear --

Sorry I have not written sooner -- I have had my hands full lately

with a few miseries (lost my beloved dog to cancer, had a creepy dr

refuse to help me get my surgery going, and just broke my ankle --

sheesh!!!).

I am so glad Rogene and Kathy told you already -- yes, I have been

researching tissue transfer reconstruction surgeries for some time --

I also taught Tammy about them so she could have her gluteal

reconstruction. Most women who carefully choose their drs for these

surgeries-- a number of whom I correspond with regularly -- are not

only happy with their results initially (like Tammy) but are happy

years later -- unlike implant reconstruction women. Though these

procedures are not free of any complications, those who developed

them study them regularly to improve on them and overcome those

complications.

You have also come to a support group that loves to dig in and help --

I adore a number of the ladies here myself. I will be happy to help

you also -- especially since I am housebound anyway. I just emailed

you so you will have my email address. Keep your chin up -- I hope

it pleases you to know that some of the drs who were pioneers

in/helped develop these tissue transfer surgery techniquest (and help

teach them to other drs around the world) are not too far from you on

the European continent.

I look forward to hearing from you.

Regards,

..--- In , " sarahspo " <sarahspoon@m...>

wrote:

>

> Sorry I havn't been in touch for a while, I spent Christmas and new

> year in Tenerife with my family then when we returned my daughters

got

> chicken pox so as you can imagine I have been rather busy, I had my

> appointment at an NHS breast clinc in the uk and the rather

> unsympathetic consultant felt my implant and said there was nothing

> wrong with it, I explained my symptoms and she told me there was no

> proff and no way my implant could be making me sick especially as it

> is saline (what a suprise) reluctantly she sent for a ultra sound

scan

> which showed a wrinkle in the implant the radiographer said this is

> where the ps never fully filled the implant which I know is not true

> as I can feel the wrinkle from the outside and know it has not

always

> been there, the radiographer told me to go back to the waiting room.

>

> I waited for about a hour and eventually got called back in and was

> told the consultant had spoken to the plastic surgeon and he said he

> was willing to remove the implant, I asked if he would also take the

> capsule and she said he would do whatever I wanted (strange

> considering they state there is nothing wrong) I then asked her how

> long the waiting list would be as my GP said it would probably be

> about a year and I would be better off going private she then said

> that masectomy patients take about two weeks and I am right behind

> them on the urgent list so should get the op within the next four to

> six weeks (again very strange considering there is nothing wrong), I

> asked if I would get to see the ps before the op and she looked

really

> put out, she said I would see him when I sign the consent forms in

> hospital.

>

> I am a bit confused by all of this but will sit and wait for the

> letter which I should recieve a week before the op telling me when

to

> go in, I think the worse thing is I am not well I have suffered

> eighteen months of extreme pain which no pain killer could even

touch

> not to mention the fatigue, headaches, brain fog etc but also the

fact

> I have missed out on nearlly two years of spending time with my

girls

> who at three and four can't possibly understand why sometimes I

can't

> play with them, take them out or even at my worse get them dressed

in

> the mornings and to add insult to injury the NHS are treating me

like

> a complete pain in the bum, I just want to get better sorry i'm

> rambling on a bit now its just so frustrating.

>

> I understand that as I only have one implant due a defect at birth

the

> left side never developed I will again be completly flat on one side

> and have to admit at 27 it will take some time to come to terms

with,

> does anyone have any advise on what I can do to disguise this? are

> there any other women on this site with a similar problem?

>

> Many Thanks

>

February 9, 2005

> >

> > Sorry I havn't been in touch for a while, I spent Christmas and new

> > year in Tenerife with my family then when we returned my daughters

> got

> > chicken pox so as you can imagine I have been rather busy, I had my

> > appointment at an NHS breast clinc in the uk and the rather

> > unsympathetic consultant felt my implant and said there was nothing

> > wrong with it, I explained my symptoms and she told me there was no

> > proff and no way my implant could be making me sick especially as it

> > is saline (what a suprise) reluctantly she sent for a ultra sound

> scan

> > which showed a wrinkle in the implant the radiographer said this is

> > where the ps never fully filled the implant which I know is not true

> > as I can feel the wrinkle from the outside and know it has not

> always

> > been there, the radiographer told me to go back to the waiting room.

> >

> > I waited for about a hour and eventually got called back in and was

> > told the consultant had spoken to the plastic surgeon and he said he

> > was willing to remove the implant, I asked if he would also take the

> > capsule and she said he would do whatever I wanted (strange

> > considering they state there is nothing wrong) I then asked her how

> > long the waiting list would be as my GP said it would probably be

> > about a year and I would be better off going private she then said

> > that masectomy patients take about two weeks and I am right behind

> > them on the urgent list so should get the op within the next four to

> > six weeks (again very strange considering there is nothing wrong), I

> > asked if I would get to see the ps before the op and she looked

> really

> > put out, she said I would see him when I sign the consent forms in

> > hospital.

> >

> > I am a bit confused by all of this but will sit and wait for the

> > letter which I should recieve a week before the op telling me when

> to

> > go in, I think the worse thing is I am not well I have suffered

> > eighteen months of extreme pain which no pain killer could even

> touch

> > not to mention the fatigue, headaches, brain fog etc but also the

> fact

> > I have missed out on nearlly two years of spending time with my

> girls

> > who at three and four can't possibly understand why sometimes I

> can't

> > play with them, take them out or even at my worse get them dressed

> in

> > the mornings and to add insult to injury the NHS are treating me

> like

> > a complete pain in the bum, I just want to get better sorry i'm

> > rambling on a bit now its just so frustrating.

> >

> > I understand that as I only have one implant due a defect at birth

> the

> > left side never developed I will again be completly flat on one side

> > and have to admit at 27 it will take some time to come to terms

> with,

> > does anyone have any advise on what I can do to disguise this? are

> > there any other women on this site with a similar problem?

> >

> > Many Thanks

> >

February 26, 2005

Hey Kim, welcome to the group!!!!!

>

> HI MY NAME IS KIM AND I'M 25 YEARS OLD. I HAVE BEEN DIAGOSNED WITH

> RA. I TAKE 7 PILLS A DAY. AND MY HANDS AND FINGERS ARE IN CONSTANT

> PAIN. I'M OVER WEIGHT. I KNOW I NEED TO LOOSE SOME WEIGHT. BUT, IT

> IS SO HARD. ANY SUGGESTIONS FOR THE PAIN? THE ONLY THING I HAVE

DONE

> THAT HAS WORKED IS WARM WATER. I BREAK DOWN AT LEAST ONCE A WEEK. I

> JUST WANT MY HANDS BACK. THIS CAME ON ALL OF A SUDDEN. THANK YOU.

> KIM

February 26, 2005

Hi Kim,

I am Tracie, 38, just diagnosed with RA about four months ago now.

Yes, my hands are missed dearly. Have you asked your doctor for a

mild pain medication? I use Darvocet occasionally and it helps a

lot to at least take the edge of so I am not in tears all the time.

I am having difficulty writing and even holding a book now. The

warm soaks are great and they have some herbal wraps that you can

warm in the microwave and put over the sore areas of your body which

I love. I found them in the mall at Christmas time, but I bet you

can find them on the internet. They actually have herbs inside that

smell really good and are supposed to help different conditions like

RA. I am on a lot of medications as well for the RA, I feel like an

old lady sometimes with all these meds, but if they can help me....

it will be worth it. Email me anytime if you want to chat or ask

questions. I know how hard it is. Try to rest as often as you can

and learn to listen to your body. If it is telling you it is time

to rest, then definitely rest. It is hard to accept all the changes

at once, but over time you will adapt, I promise. My email should

be listed above, but if not it is tracierae@.... Take

care and good luck. Tracie

>

> HI MY NAME IS KIM AND I'M 25 YEARS OLD. I HAVE BEEN DIAGOSNED WITH

> RA. I TAKE 7 PILLS A DAY. AND MY HANDS AND FINGERS ARE IN CONSTANT

> PAIN. I'M OVER WEIGHT. I KNOW I NEED TO LOOSE SOME WEIGHT. BUT, IT

> IS SO HARD. ANY SUGGESTIONS FOR THE PAIN? THE ONLY THING I HAVE

DONE

> THAT HAS WORKED IS WARM WATER. I BREAK DOWN AT LEAST ONCE A WEEK.

I

> JUST WANT MY HANDS BACK. THIS CAME ON ALL OF A SUDDEN. THANK YOU.

> KIM

February 27, 2005

Welcome, Kim! Sorry about your RA diagnosis and that you aren't doing well.

Do you have a rheumatologist? When were you diagnosed? What medications are

your taking?

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] PLEASE HELP

>

> HI MY NAME IS KIM AND I'M 25 YEARS OLD. I HAVE BEEN DIAGOSNED WITH

> RA. I TAKE 7 PILLS A DAY. AND MY HANDS AND FINGERS ARE IN CONSTANT

> PAIN. I'M OVER WEIGHT. I KNOW I NEED TO LOOSE SOME WEIGHT. BUT, IT

> IS SO HARD. ANY SUGGESTIONS FOR THE PAIN? THE ONLY THING I HAVE DONE

> THAT HAS WORKED IS WARM WATER. I BREAK DOWN AT LEAST ONCE A WEEK. I

> JUST WANT MY HANDS BACK. THIS CAME ON ALL OF A SUDDEN. THANK YOU.

> KIM

February 28, 2005

Hi my name is Tammy. I'm Ken's wife. I hope this will help you at least a

little. Last year Ken's hands were really bad and I taught him to chrochet. He

says that it helps his hands. I guess it's a form of PT.

foxybratgirlkm <foxybratgirlkm@...> wrote:

HI MY NAME IS KIM AND I'M 25 YEARS OLD. I HAVE BEEN DIAGOSNED WITH

RA. I TAKE 7 PILLS A DAY. AND MY HANDS AND FINGERS ARE IN CONSTANT

PAIN. I'M OVER WEIGHT. I KNOW I NEED TO LOOSE SOME WEIGHT. BUT, IT

IS SO HARD. ANY SUGGESTIONS FOR THE PAIN? THE ONLY THING I HAVE DONE

THAT HAS WORKED IS WARM WATER. I BREAK DOWN AT LEAST ONCE A WEEK. I

JUST WANT MY HANDS BACK. THIS CAME ON ALL OF A SUDDEN. THANK YOU.

KIM

February 28, 2005

Tammy, It is so great to see such a supporting wife. Ken told me about his

crocheting and if I didn't have it I would probably never use my hands again. I

crochet all the time, turning out afghans for all my friends. It is a joy to me

because just to see the look on their faces when they open up their gift is

priceless. A smile with this gift means more to me than anything else. It

helps through the dark times. Ken is lucky to have you. And if you ever get

bored I have more patterns than you can imagine. Remember now, I am a product

of the 60's,

Judith Ann

T Samualsen <chainlink1960@...> wrote:

Hi my name is Tammy. I'm Ken's wife. I hope this will help you at least a

little. Last year Ken's hands were really bad and I taught him to chrochet. He

says that it helps his hands. I guess it's a form of PT.

foxybratgirlkm <foxybratgirlkm@...> wrote:

HI MY NAME IS KIM AND I'M 25 YEARS OLD. I HAVE BEEN DIAGOSNED WITH

RA. I TAKE 7 PILLS A DAY. AND MY HANDS AND FINGERS ARE IN CONSTANT

PAIN. I'M OVER WEIGHT. I KNOW I NEED TO LOOSE SOME WEIGHT. BUT, IT

IS SO HARD. ANY SUGGESTIONS FOR THE PAIN? THE ONLY THING I HAVE DONE

THAT HAS WORKED IS WARM WATER. I BREAK DOWN AT LEAST ONCE A WEEK. I

JUST WANT MY HANDS BACK. THIS CAME ON ALL OF A SUDDEN. THANK YOU.

KIM

March 1, 2005

THANKS FOR THE ADVICE BUT I TRIED TO DO THAT WHEN MY HANDS WERE OK. AND I

COULDN'T DO IT. I TRY AND DO THE DISHES, CUASE MY HANDS ARE UNDER THE WARM

WATER. AND THAT FEELS GOOD.

KIM

T Samualsen <chainlink1960@...> wrote:

Hi my name is Tammy. I'm Ken's wife. I hope this will help you at least a

little. Last year Ken's hands were really bad and I taught him to chrochet. He

says that it helps his hands. I guess it's a form of PT.

foxybratgirlkm <foxybratgirlkm@...> wrote:

HI MY NAME IS KIM AND I'M 25 YEARS OLD. I HAVE BEEN DIAGOSNED WITH

RA. I TAKE 7 PILLS A DAY. AND MY HANDS AND FINGERS ARE IN CONSTANT

PAIN. I'M OVER WEIGHT. I KNOW I NEED TO LOOSE SOME WEIGHT. BUT, IT

IS SO HARD. ANY SUGGESTIONS FOR THE PAIN? THE ONLY THING I HAVE DONE

THAT HAS WORKED IS WARM WATER. I BREAK DOWN AT LEAST ONCE A WEEK. I

JUST WANT MY HANDS BACK. THIS CAME ON ALL OF A SUDDEN. THANK YOU.

KIM

March 1, 2005

Ken also has a rubber ball (I think they call it a stress ball). He was using

that at first and it helped some what.

KIM SNYDER <foxybratgirlkm@...> wrote:

THANKS FOR THE ADVICE BUT I TRIED TO DO THAT WHEN MY HANDS WERE OK. AND I

COULDN'T DO IT. I TRY AND DO THE DISHES, CUASE MY HANDS ARE UNDER THE WARM

WATER. AND THAT FEELS GOOD.

KIM

T Samualsen <chainlink1960@...> wrote:

Hi my name is Tammy. I'm Ken's wife. I hope this will help you at least a

little. Last year Ken's hands were really bad and I taught him to chrochet. He

says that it helps his hands. I guess it's a form of PT.

foxybratgirlkm <foxybratgirlkm@...> wrote:

HI MY NAME IS KIM AND I'M 25 YEARS OLD. I HAVE BEEN DIAGOSNED WITH

RA. I TAKE 7 PILLS A DAY. AND MY HANDS AND FINGERS ARE IN CONSTANT

PAIN. I'M OVER WEIGHT. I KNOW I NEED TO LOOSE SOME WEIGHT. BUT, IT

IS SO HARD. ANY SUGGESTIONS FOR THE PAIN? THE ONLY THING I HAVE DONE

THAT HAS WORKED IS WARM WATER. I BREAK DOWN AT LEAST ONCE A WEEK. I

JUST WANT MY HANDS BACK. THIS CAME ON ALL OF A SUDDEN. THANK YOU.

KIM

March 4, 2005

Welcome Kim. I'm sorry you are in so much pain. Do you take pain

meds? Some people get relief from the hot wax treatments. I think

they cost around 39$. What meds are you on and how long have you been

on them? Maybe you need something else if your current treatment

isn't working.

a

On Sun, 27 Feb 2005 04:35:32 -0000, foxybratgirlkm

<foxybratgirlkm@...> wrote:

>

> HI MY NAME IS KIM AND I'M 25 YEARS OLD. I HAVE BEEN DIAGOSNED WITH

> RA. I TAKE 7 PILLS A DAY. AND MY HANDS AND FINGERS ARE IN CONSTANT

> PAIN. I'M OVER WEIGHT. I KNOW I NEED TO LOOSE SOME WEIGHT. BUT, IT

> IS SO HARD. ANY SUGGESTIONS FOR THE PAIN? THE ONLY THING I HAVE DONE

> THAT HAS WORKED IS WARM WATER. I BREAK DOWN AT LEAST ONCE A WEEK. I

> JUST WANT MY HANDS BACK. THIS CAME ON ALL OF A SUDDEN. THANK YOU.

> KIM

>

May 6, 2005

Can you tell me who did your surgery and why you think you developed

problems on explant? Can you give more details on your explant? I am

planning June 6 surgery and want to hear as much as possible. Thank you.

> Hi Ladies

>

> I haven't posted for some time but for those of you who don't know I

> was explanted about 6 weeks ago and developed a seroma which caused my

> scar to come open, once the seroma had drained I felt a lot better my

> joint pain had gone as had my fatigue and a lot of other symptoms but

> unfourtunately I have now developed a tissue infection and have been

> put on flucloxacillin, since taking them my fibromyalgia has come back

> and I am feeling terrible I have contemplated stopping taking them but

> I know its the only way I'll get over the infection. does anyone have

> any advise that could help me get through the next couple of weeks

> until I can stop the anti biotics. I am still taking garlic and a pro

> biotic and have also been put on amitryptiline to help me reach deep

> sleep and am not sure if its okay to take this.

>

> Any advise would be warmly appreciated

>

May 7, 2005

Dearest :

I'm so sorry that you are having problems. The ladies in this group will

help you to get through all this. It will take time to heal, so please give

yourself time.

I'm sorry that I have not responded to your notes. I have not been doing

very well for the last week. I too had a seroma, but it was not until one

year after

my explant. I have been on antibiotics so much, but would love to come off

them. You have an infection, and you must take the antibiotics until the

infection is gone. The ladies in our group will advise you on what you

should be doing to detox. I take probiotics three times a day and drink

acidophilus milk.

Honey, I know that you are afraid, but you have all of us who will help you

through the tough times.

Sending you love...Lea

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

Re: Please Help

> Can you tell me who did your surgery and why you think you developed

> problems on explant? Can you give more details on your explant? I am

> planning June 6 surgery and want to hear as much as possible. Thank you.

>

>> Hi Ladies

>>

>> I haven't posted for some time but for those of you who don't know I

>> was explanted about 6 weeks ago and developed a seroma which caused my

>> scar to come open, once the seroma had drained I felt a lot better my

>> joint pain had gone as had my fatigue and a lot of other symptoms but

>> unfourtunately I have now developed a tissue infection and have been

>> put on flucloxacillin, since taking them my fibromyalgia has come back

>> and I am feeling terrible I have contemplated stopping taking them but

>> I know its the only way I'll get over the infection. does anyone have

>> any advise that could help me get through the next couple of weeks

>> until I can stop the anti biotics. I am still taking garlic and a pro

>> biotic and have also been put on amitryptiline to help me reach deep

>> sleep and am not sure if its okay to take this.

>>

>> Any advise would be warmly appreciated

>>

>

> 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)

>

May 7, 2005

hi

I live in the uk and had my surgery here on the National Health

Services who also put my implant in, they did not believe my implant

was making me sick and made me sign a consent form saying the surgery

was due to breast tenderness they had me over a barrell really as they

knew I could not afford to have it done privatly. The reason I

developed problems was because they did not leave my drain in long

enough and my after care has been quite poor. I had a capsulectomy but

they did not use the en bloc method and they also disposed of my

implant so I do not know exactly what problems I'm up against, I would

say to you not to worry from what I can gather you have the best

surgeons in america and they are also sympathetic to implant illness I

just hope the UK follow in their shoes some day, the ladies on this

site have really got me through this and helped with my detoxing so

any questions just ask

hugs

- In , " interart81 " <interart81@y...> wrote:

> Can you tell me who did your surgery and why you think you developed

> problems on explant? Can you give more details on your explant? I am

> planning June 6 surgery and want to hear as much as possible. Thank

you.

>

> --- In , " sarahspo " <sarahspoon@m...>

wrote:

> > Hi Ladies

> >

> > I haven't posted for some time but for those of you who don't know I

> > was explanted about 6 weeks ago and developed a seroma which caused my

> > scar to come open, once the seroma had drained I felt a lot better my

> > joint pain had gone as had my fatigue and a lot of other symptoms but

> > unfourtunately I have now developed a tissue infection and have been

> > put on flucloxacillin, since taking them my fibromyalgia has come back

> > and I am feeling terrible I have contemplated stopping taking them but

> > I know its the only way I'll get over the infection. does anyone have

> > any advise that could help me get through the next couple of weeks

> > until I can stop the anti biotics. I am still taking garlic and a pro

> > biotic and have also been put on amitryptiline to help me reach deep

> > sleep and am not sure if its okay to take this.

> >

> > Any advise would be warmly appreciated

> >

May 7, 2005

-

Dear sarah

I am so sorry that you developed a tissue infection. That really

stinks! I was trying to look your antibiotic up and apparently you

have a staph infection. It sounds like the drug you are taking is

very specific for that type of infection and I would hesitate to

just stop it as staph can get quite serious. You might try telling

your doctor how much worse you are feeling and see what he has to

say. I also read that you have to be careful with this drug for

liver and kidney problems. How long do you have to be on it? I

would make sure to take it exactly as directed so that it will be

effective in the least amount of time. Also do what you can to help

by eating nutritionously. It is possible that you are getting the

fibro symptoms because of the die off of pathogens from the

antibiotic you are taking. You are wise to use probiotics at the

same time. Lots of them. Whatever you do, don't just stop the

antibiotic without consulting your doctor. That could allow the

staph to grow out of control. but do ask if there is something else

you could switch to. Perhaps there is, though it did look like the

drug of choice when I looked it up IF you have staph. It looks like

olive leaf extract can kill staph too, but it can't be used with

antibiotics as it can inactivate them. It would be wise to drink

plenty of water too. I wish I could be of more help.

Hugs

Kathy

-- In , " sarahspo " <sarahspoon@m...> w

rote:

> Hi Ladies

>

> I haven't posted for some time but for those of you who don't know

I

> was explanted about 6 weeks ago and developed a seroma which

caused my

> scar to come open, once the seroma had drained I felt a lot better

my

> joint pain had gone as had my fatigue and a lot of other symptoms

but

> unfourtunately I have now developed a tissue infection and have

been

> put on flucloxacillin, since taking them my fibromyalgia has come

back

> and I am feeling terrible I have contemplated stopping taking them

but

> I know its the only way I'll get over the infection. does anyone

have

> any advise that could help me get through the next couple of weeks

> until I can stop the anti biotics. I am still taking garlic and a

pro

> biotic and have also been put on amitryptiline to help me reach

deep

> sleep and am not sure if its okay to take this.

>

> Any advise would be warmly appreciated

>

May 7, 2005

You can get seroma up to a year after explant? What were your

symptoms? Did you initially have drains? I had my explantation on

May4th (I have drains, but I still worry) Any info would help me

drastically! Thanks, Shana

> >> Hi Ladies

> >>

> >> I haven't posted for some time but for those of you who don't

know I

> >> was explanted about 6 weeks ago and developed a seroma which

caused my

> >> scar to come open, once the seroma had drained I felt a lot

better my

> >> joint pain had gone as had my fatigue and a lot of other

symptoms but

> >> unfourtunately I have now developed a tissue infection and have

been

> >> put on flucloxacillin, since taking them my fibromyalgia has

come back

> >> and I am feeling terrible I have contemplated stopping taking

them but

> >> I know its the only way I'll get over the infection. does anyone

have

> >> any advise that could help me get through the next couple of

weeks

> >> until I can stop the anti biotics. I am still taking garlic and

a pro

> >> biotic and have also been put on amitryptiline to help me reach

deep

> >> sleep and am not sure if its okay to take this.

> >>

> >> Any advise would be warmly appreciated

> >>

> >

> > 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)

> >

May 7, 2005

:

DId you have drains put in? What were your sumptoms? I'm asking because

I was explanted (with drains) a few days ago and I worry so much about

seroma and infection. Any info would be so helpful! Shana