Re: Just joined the group

[Guest guest]

Hi and welcome to the group. I am from New Zealand with 6 yr old

Ehan who has BPES and is the first in our family to have it. I for one have

not heard of the bone graft thing. anyway just wanted to say hi and welcome.

Leah

blepharophimosis Just joined the group

> Hi all,

> I am thankful to have found this group! My name is and I am

> affected with BPES and my daughter Paige was also born with it. There

> is no other family history of BPES so it originated with me. I had no

> idea what I had until my daughter was born with the same shaped eyes

> two years ago and my husband and I started researching. I had

> corrective surgery when I was a year old where a plastic surgeon

> corrected the inside corners, and then a follow up sugery was

> performed to lift the lids at age five. I have had no other surgeries.

>

> I am in the process of speaking with doctors in my area (I live in

> North Carolina) and I wanted to get some feedback from any of you who

> might be able to help. I have spoken with both a pediatric

> ophthalmologist and plastic surgeon. I told them that I would want

> them to work together depending on their areas of expertise when Paige

> has her surgeries. However, the plastic surgeon was explaining that

> he would also want to do a bone graft on Paige in the space where the

> eye sits in the skull. He went on to explain that in unaffected

> individuals, as they mature, the bone in the eye socket builds up and

> as a result the eye socket gets smaller, allowing the eye to protrude

> just enough to create the " fold " in the eyelid. In the case with

> individuals with BPES, the eye socket in the skull remains enlarged

> and therefore the eye sits further back in the skull. Has anyone else

> ever heard of this?

>

> Everything else that the doctors have said relating to her surgeries

> are very much like what I had done twenty-five years ago. That was

> the only thing that made me feel uncertain. Any feedback you have

> would be appreciated.

>

> Regards,

>

>

>

>

>

>

>

>

[Guest guest]

Hi , and welcome,

> However, the plastic surgeon was explaining that

> he would also want to do a bone graft on Paige in the space where the

> eye sits in the skull. He went on to explain that in unaffected

> individuals, as they mature, the bone in the eye socket builds up and

> as a result the eye socket gets smaller, allowing the eye to protrude

> just enough to create the " fold " in the eyelid. In the case with

> individuals with BPES, the eye socket in the skull remains enlarged

> and therefore the eye sits further back in the skull. Has anyone else

> ever heard of this?

I've never heard of bone grafts being done, or being necessary, for a

permanent BPEI fix. When I think of the many successful (i.e. with a

" fold " created) corrections that have been done without it, including my

own, I have to wonder. It also seems counter-intuitive to think that

what is basically an eyelid/muscle (i.e. soft tissue) malformation would

affect the growth of bone.

As a rule of thumb, I always get a second, third and fourth opinion when

a medico suggests something seemingly radical, such as a graft. In my

son's case, a surgeon wanted to do a palatal graft to fix his entropion.

" Bzzzt. Wrong. Next contestant please. " We found several blokes who

could fix it less intrusively, and went with one of them.

Perhaps this person could refer you to some journal papers (preferably

that they've written) that explain the technique and its necessity,

success rate, etc.

> Everything else that the doctors have said relating to her surgeries

> are very much like what I had done twenty-five years ago. That was

> the only thing that made me feel uncertain. Any feedback you have

> would be appreciated.

We've learned to go with our intuition. If a doctor's suggestion seems

unexpected or off track somehow, we keep looking. If we're not

comfortable, there are other doctors out there to talk to.

We adopt the midset that this is a job that they (the doctors) are being

interviewed for, and we grill them without mercy. A doctor must prove

they're up to par or they don't get hired.

Just our experience; I hope this has been helpful.

Rob W

Oz

[Guest guest]

Hi ,

We live in Colorado. Our son, Micah, was born with

BPES and had one surger at three years old. You can

go see his picture under " Eisele Family " . There is a

before and after. I have never heard of the bone

thing either. Welcome to the group!

April Eisele, Colorado, USA

Wife to Jon

Mommy to Mira, Micah & Misha

--- happyappykd <happyappykd@...> wrote:

> Hi all,

> I am thankful to have found this group! My name is

> and I am

> affected with BPES and my daughter Paige was also

> born with it. There

> is no other family history of BPES so it originated

> with me. I had no

> idea what I had until my daughter was born with the

> same shaped eyes

> two years ago and my husband and I started

> researching. I had

> corrective surgery when I was a year old where a

> plastic surgeon

> corrected the inside corners, and then a follow up

> sugery was

> performed to lift the lids at age five. I have had

> no other surgeries.

>

> I am in the process of speaking with doctors in my

> area (I live in

> North Carolina) and I wanted to get some feedback

> from any of you who

> might be able to help. I have spoken with both a

> pediatric

> ophthalmologist and plastic surgeon. I told them

> that I would want

> them to work together depending on their areas of

> expertise when Paige

> has her surgeries. However, the plastic surgeon was

> explaining that

> he would also want to do a bone graft on Paige in

> the space where the

> eye sits in the skull. He went on to explain that

> in unaffected

> individuals, as they mature, the bone in the eye

> socket builds up and

> as a result the eye socket gets smaller, allowing

> the eye to protrude

> just enough to create the " fold " in the eyelid. In

> the case with

> individuals with BPES, the eye socket in the skull

> remains enlarged

> and therefore the eye sits further back in the

> skull. Has anyone else

> ever heard of this?

>

> Everything else that the doctors have said relating

> to her surgeries

> are very much like what I had done twenty-five years

> ago. That was

> the only thing that made me feel uncertain. Any

> feedback you have

> would be appreciated.

>

> Regards,

>

>

>

>

>

__________________________________

FareChase: Search multiple travel sites in one click.

http://farechase.

[Guest guest]

Hi ,

Welcome. I was the first in my family to be affected with BPES as

well. I have a fou year old son, jens, who also has BPES. My

youngest son is not affected. I had surgery at the age of 6, 8 and

11. Jens is about to undergo surgery in January next year. We live

in Belgium and our surgeon is Dr. Decock at the university hospital

of Gent.

This is what I found out about surgery:

When vision is not impaired, it's best to wait untill the age of

four because then the succes rate is higher. When vision is impaired

it's neccesary to do a temporary lifting with silicon slings to

ensure a normalk development of vision. When vision is not impaired

its most logical to start with the canthoplasty, because this

enlarges the eyelid. In a second fase the enlarged eyelid will be

lifted. The lifting is done in two stages. First a local procedure

in wich they make an incision in the upper eyelid to create the

fold. During this procedure the upper eyelid is tilted a bit

backwards so that after the second stage, attaching the upper eyelid

to the forehead, the movement of the eyelid is more like the natural

movement of the eyelid: backwards and upwards and not just upwards.

For the correction of the inner eye corners an YV canthoplasty is

used and, when neccesary, additionaly a Z plasty to 'remove'

the 'extra' tissue of the lower eyelid. As far as I know this is the

same way as Dr. , an expert in the UK, does it.

I have never heard of bone grafting in BPES. As far as I know the

eye socket in BPES is normal. One of the main problems is that the

inner ligament is not tense and strong enough. There is no fold in

the upper eyelid because it is paralysed, not because the eyes are

positioned to far backwards.

I think you should go to an expert, someone who does a couple of

these surgeries every year, to hear other opinions. It's to

important.

Hope I was of any help

Jeroen

>

> Hi all,

> I am thankful to have found this group! My name is and I

am

> affected with BPES and my daughter Paige was also born with it.

There

> is no other family history of BPES so it originated with me. I

had no

> idea what I had until my daughter was born with the same shaped

eyes

> two years ago and my husband and I started researching. I had

> corrective surgery when I was a year old where a plastic surgeon

> corrected the inside corners, and then a follow up sugery was

> performed to lift the lids at age five. I have had no other

surgeries.

>

> I am in the process of speaking with doctors in my area (I live in

> North Carolina) and I wanted to get some feedback from any of you

who

> might be able to help. I have spoken with both a pediatric

> ophthalmologist and plastic surgeon. I told them that I would

want

> them to work together depending on their areas of expertise when

Paige

> has her surgeries. However, the plastic surgeon was explaining

that

> he would also want to do a bone graft on Paige in the space where

the

> eye sits in the skull. He went on to explain that in unaffected

> individuals, as they mature, the bone in the eye socket builds up

and

> as a result the eye socket gets smaller, allowing the eye to

protrude

> just enough to create the " fold " in the eyelid. In the case with

> individuals with BPES, the eye socket in the skull remains

enlarged

> and therefore the eye sits further back in the skull. Has anyone

else

> ever heard of this?

>

> Everything else that the doctors have said relating to her

surgeries

> are very much like what I had done twenty-five years ago. That

was

> the only thing that made me feel uncertain. Any feedback you have

> would be appreciated.

>

> Regards,

>

>

[Guest guest]

Thank you all for all of the information you have shared. It is

extremely helpful. I have an appointment with Paige's

ophthalmologist tomorrow so I will be able to ask a lot of questions.

Thanks again,

> >

> > Hi all,

> > I am thankful to have found this group! My name is and

I

> am

> > affected with BPES and my daughter Paige was also born with it.

> There

> > is no other family history of BPES so it originated with me. I

> had no

> > idea what I had until my daughter was born with the same shaped

> eyes

> > two years ago and my husband and I started researching. I had

> > corrective surgery when I was a year old where a plastic surgeon

> > corrected the inside corners, and then a follow up sugery was

> > performed to lift the lids at age five. I have had no other

> surgeries.

> >

> > I am in the process of speaking with doctors in my area (I live

in

> > North Carolina) and I wanted to get some feedback from any of

you

> who

> > might be able to help. I have spoken with both a pediatric

> > ophthalmologist and plastic surgeon. I told them that I would

> want

> > them to work together depending on their areas of expertise when

> Paige

> > has her surgeries. However, the plastic surgeon was explaining

> that

> > he would also want to do a bone graft on Paige in the space

where

> the

> > eye sits in the skull. He went on to explain that in unaffected

> > individuals, as they mature, the bone in the eye socket builds

up

> and

> > as a result the eye socket gets smaller, allowing the eye to

> protrude

> > just enough to create the " fold " in the eyelid. In the case with

> > individuals with BPES, the eye socket in the skull remains

> enlarged

> > and therefore the eye sits further back in the skull. Has

anyone

> else

> > ever heard of this?

> >

> > Everything else that the doctors have said relating to her

> surgeries

> > are very much like what I had done twenty-five years ago. That

> was

> > the only thing that made me feel uncertain. Any feedback you

have

> > would be appreciated.

> >

> > Regards,

> >

> >

>

[Guest guest]

Hi to all,

here Tamara from milan, Italy.

As I read, , your Kirsten had her first surgery with Mr Collin?

We are going to be in UK on 10 jan 06, in order to see Mr. Collin

for our little Alice (4 months).There's the possibility, if Mr.

Collin believes is necessary, that on 12 jan Alice have her lift's

lids surgery. I decided to come in UK and see Mr. collin 'cause I

read a lot and actually results the most experienced surgeon in

Europe.

Here in Italy, it's not correct saying that Surgeons are not able to

operate BPES cases, but the number of children seems to be too few.

An embrace to everyone.

Tamara

> >

> > Hi all,

> > I am thankful to have found this group! My name is and

I

> am

> > affected with BPES and my daughter Paige was also born with it.

> There

> > is no other family history of BPES so it originated with me. I

> had no

> > idea what I had until my daughter was born with the same shaped

> eyes

> > two years ago and my husband and I started researching. I had

> > corrective surgery when I was a year old where a plastic surgeon

> > corrected the inside corners, and then a follow up sugery was

> > performed to lift the lids at age five. I have had no other

> surgeries.

> >

> > I am in the process of speaking with doctors in my area (I live

in

> > North Carolina) and I wanted to get some feedback from any of

you

> who

> > might be able to help. I have spoken with both a pediatric

> > ophthalmologist and plastic surgeon. I told them that I would

> want

> > them to work together depending on their areas of expertise when

> Paige

> > has her surgeries. However, the plastic surgeon was explaining

> that

> > he would also want to do a bone graft on Paige in the space

where

> the

> > eye sits in the skull. He went on to explain that in unaffected

> > individuals, as they mature, the bone in the eye socket builds

up

> and

> > as a result the eye socket gets smaller, allowing the eye to

> protrude

> > just enough to create the " fold " in the eyelid. In the case with

> > individuals with BPES, the eye socket in the skull remains

> enlarged

> > and therefore the eye sits further back in the skull. Has

anyone

> else

> > ever heard of this?

> >

> > Everything else that the doctors have said relating to her

> surgeries

> > are very much like what I had done twenty-five years ago. That

> was

> > the only thing that made me feel uncertain. Any feedback you

have

> > would be appreciated.

> >

> > Regards,

> >

> >

>

[Guest guest]

Welcome to the group, Susie!! I think I remember you from another group. I have

sero-negative RA, too. I was diagnosed about 3 years ago. Because I don't have

health insurance, I've been limited to what I can afford for medication and the

online Rx cards help with discounts. I take MTX injections once a week and

Sulfasalazine twice a day. I quit the Prednisone and backed off on the Neurontin

(I also have FM) because of severe weight gain. I have degenerative changes in

my spine and now in my foot that have been giving me a fit for quite a while

now. I recently signed on with Enbrel's patient assistance program and look

forward to starting it soon.

I don't know about the differences between the two - all I know is how I feel.

And from what I've read - pain is pain is pain - whether you're positive or

negative. Perhaps those with RA+ have quicker joint destruction than those of us

that are RA-, I don't know. As far as what to watch out for, I would just take

it one day at a time. Work closely with your Rheumy and if you are experiencing

something different or more severe, call them and see what they think.

We are all more than willing to share our experiences and answer questions as

best we can. I look forward to hearing more from you.

Take care and God Bless.....Doreen

Hello everyone. My name is Susie Bartholow and I was diagnosed with RA last

week. I live in the Ft. Worth, Texas area with my husband and 2 little

Chihuahuas. I have lots of questions and probably more as time goes by. I also

have Fibromyalgia, severe osteoporosis, DDD, DJD, IBS and now RA.

Here is my first question. My rheumatologist performed tons of blood tests

before diagnosing me. He told me that all of my signs and symptoms and MRIs,

CTs and x-rays showed me to have RA, but that my blood work showed negative for

RA. So he said what I actually have is " sero-negative " RA. So I have done some

research on this and what I read said that this was the kind of RA to have, if

you have it. However, I also read that when a person has sero-positive RA that

they need to be very concerned about the possibility of having Lupus.

This is all new to me, the RA thing. So could someone please explain to me if

the symptoms are different with sero-negative RA, can it turn into sero-positive

RA and what about the Lupus thing. What do I need to watch for.

I am really looking forward to learning more about RA and meeting people that

have it.

Thanks,