Re: Older ptosis (was: celine 19yr old english girl with condition!)

[Guest guest]

Thanks, Rob! It was good to hear from someone else who's been in my

shoes.

What was the year of your last surgery? Did you have any problems

with scarring or infection? And have you had any problems with your

eyes drying out, or eyelids closing properly? Those are things that

are personally worrying me. They worried my ophthalmic surgeon, when

he was contemplating this for me 30 years ago. And at the last

moment, he said he didn't want to risk it, and said that I would be

just fine if I didn't have the surgery.

But in my mind it wasn't " fine. " I always wanted to have it done.

But when he died, that was it. My regular ophthalmologist didn't see

the need to find another ophthalmic surgeon.

Just wondering if anyone knows a good surgeon in the USA, where I

live.

It was great to hear from you, and to hear how you've become such a

hunk!

Happy winter to you in Australia. It's boiling hot here in Florida.

Thanks again,

Loka

--- In blepharophimosis , Rob <r.watson@b...>

wrote:

> Hi Loka,

>

> > I've just discovered this group as well. I just became a member

> > yesterday. I'm glad to hear that there are Bleph adults here. I

> > literally stumbled across this site when I was doing a search

> > for " ptosis. " I'm 43, and I've had 3 surgeries as a child. The

funny

> > thing is that my doctor and surgeon never used the " bleph " word

to

> > me or my parents. I'm just wondering when this term came into

being.

> > And did my doctor, 40 years ago, have any knowledge of this

> > condition? (Anyone else out there in this situation???)

>

> 40 years ago, when I was also having my surgeries (I'm 44), the

> techniques to correct BPEI were pretty much still being worked

out.

> However, the scientific journal articles that I have from the 60s

(and

> the 50s, I think?) used the same terms that are used today - at

least

> for the individual symptoms (ptosis, blepharophimois, epicanthus

> inversus) if not for the collective BPEI syndrome as a whole. Like

you,

> my surgeon never named this thing. I had to specifically ask him

(when I

> was in my 20s) " What is this called? " , and then he wrote it down

for me.

> Back then, very few ophthalmic surgeons knew how to treat it,

although

> most would have known its symptoms' names (since they're less rare

as

> separate conditions, especially ptosis), and very few, even today,

ever

> see a case in their lives.

>

> Until I was about 7, nobody in Australia knew how to fix it,

although a

> few had a go at it, without much success. Then one surgeon

returned from

> studying in Britain (probably at Moorfields Hospital) and he was

the

> only one within 12,000 miles (miles? what are those things again?)

able

> to turn me into the stunning beauty I am today (ha!).

>

> > Now, as an adult, I'm interested to know if any surgery is

possible

> > at this stage. Anybody have any advice for me?

>

> You aren't the only person in this group who is considering ptosis

> correction at an " advanced " age, so you're not alone. Not me, I'm

all

> done, but there's a guy about our age in sunny Texas (the state in

the

> USA, not the NSW/QLD border town) considering having his ptosis

fixed at

> last.

>

> I seem to recall ptosis is a not-too-uncommon late-onset problem

for old

> folks, not just those who've had it all along like us. But I'm no

doc,

> so maybe you could ask your nearest occuloplastic bloke or

ophthalmic

> surgeon.

>

> > Thanks, and hugs!

>

> Much appreciated; it's winter over here in Oz. :-)

>

> Rob W

[Guest guest]

Hi

I am 34 and I wonder if I should get some further surgery, I notice

that my right lid is definitely lower than it used to be... but

right now more concerned with my one year old daughter, who also has

BPES.

There seem to be several families on this board in FL whose children

have had surgery recently.

Just curious, do you have children and do they have BPES? My dad and

grandfather have it.

Beth

> > Hi Loka,

> >

> > > I've just discovered this group as well. I just became a

member

> > > yesterday. I'm glad to hear that there are Bleph adults here.

I

> > > literally stumbled across this site when I was doing a search

> > > for " ptosis. " I'm 43, and I've had 3 surgeries as a child. The

> funny

> > > thing is that my doctor and surgeon never used the " bleph "

word

> to

> > > me or my parents. I'm just wondering when this term came into

> being.

> > > And did my doctor, 40 years ago, have any knowledge of this

> > > condition? (Anyone else out there in this situation???)

> >

> > 40 years ago, when I was also having my surgeries (I'm 44), the

> > techniques to correct BPEI were pretty much still being worked

> out.

> > However, the scientific journal articles that I have from the

60s

> (and

> > the 50s, I think?) used the same terms that are used today - at

> least

> > for the individual symptoms (ptosis, blepharophimois, epicanthus

> > inversus) if not for the collective BPEI syndrome as a whole.

Like

> you,

> > my surgeon never named this thing. I had to specifically ask him

> (when I

> > was in my 20s) " What is this called? " , and then he wrote it down

> for me.

> > Back then, very few ophthalmic surgeons knew how to treat it,

> although

> > most would have known its symptoms' names (since they're less

rare

> as

> > separate conditions, especially ptosis), and very few, even

today,

> ever

> > see a case in their lives.

> >

> > Until I was about 7, nobody in Australia knew how to fix it,

> although a

> > few had a go at it, without much success. Then one surgeon

> returned from

> > studying in Britain (probably at Moorfields Hospital) and he was

> the

> > only one within 12,000 miles (miles? what are those things

again?)

> able

> > to turn me into the stunning beauty I am today (ha!).

> >

> > > Now, as an adult, I'm interested to know if any surgery is

> possible

> > > at this stage. Anybody have any advice for me?

> >

> > You aren't the only person in this group who is considering

ptosis

> > correction at an " advanced " age, so you're not alone. Not me,

I'm

> all

> > done, but there's a guy about our age in sunny Texas (the state

in

> the

> > USA, not the NSW/QLD border town) considering having his ptosis

> fixed at

> > last.

> >

> > I seem to recall ptosis is a not-too-uncommon late-onset problem

> for old

> > folks, not just those who've had it all along like us. But I'm

no

> doc,

> > so maybe you could ask your nearest occuloplastic bloke or

> ophthalmic

> > surgeon.

> >

> > > Thanks, and hugs!

> >

> > Much appreciated; it's winter over here in Oz. :-)

> >

> > Rob W

[Guest guest]

Hello older ptosis folks. I found this site last week and I'm

learning heaps and communicate by email to another here in New

Zealand.

I had my first ptosis op at 7years (its on the database)and

adjustment at 10 for streaming eyes. Mr Burns said to my Mum " well

you will really need to get her married off so recommend no further

ops " This kid never forgot those words. I am divorced like half of

the baby boomers out there and it does matter to me how I look and

always did. I am researching to find out what I can have done as the

2 plastic slings need adjustments now to even up my eyes. One has

always been too tight and the othr gave up years ago. My son won't

be going thru this as he had the bilateral lid muscle loop done -

he's lucky to have lids that work in unison - mine don't.

Would welcome emails and info from folks where ever. Best wishes -

Most reviled saying " The eyes are the windows to the soul "

Most loved " " Live the dream "

> > Hi Loka,

> >

> > > I've just discovered this group as well. I just became a member

> > > yesterday. I'm glad to hear that there are Bleph adults here. I

> > > literally stumbled across this site when I was doing a search

> > > for " ptosis. " I'm 43, and I've had 3 surgeries as a child. The

> funny

> > > thing is that my doctor and surgeon never used the " bleph " word

> to

> > > me or my parents. I'm just wondering when this term came into

> being.

> > > And did my doctor, 40 years ago, have any knowledge of this

> > > condition? (Anyone else out there in this situation???)

> >

> > 40 years ago, when I was also having my surgeries (I'm 44), the

> > techniques to correct BPEI were pretty much still being worked

> out.

> > However, the scientific journal articles that I have from the 60s

> (and

> > the 50s, I think?) used the same terms that are used today - at

> least

> > for the individual symptoms (ptosis, blepharophimois, epicanthus

> > inversus) if not for the collective BPEI syndrome as a whole.

Like

> you,

> > my surgeon never named this thing. I had to specifically ask him

> (when I

> > was in my 20s) " What is this called? " , and then he wrote it down

> for me.

> > Back then, very few ophthalmic surgeons knew how to treat it,

> although

> > most would have known its symptoms' names (since they're less

rare

> as

> > separate conditions, especially ptosis), and very few, even

today,

> ever

> > see a case in their lives.

> >

> > Until I was about 7, nobody in Australia knew how to fix it,

> although a

> > few had a go at it, without much success. Then one surgeon

> returned from

> > studying in Britain (probably at Moorfields Hospital) and he was

> the

> > only one within 12,000 miles (miles? what are those things

again?)

> able

> > to turn me into the stunning beauty I am today (ha!).

> >

> > > Now, as an adult, I'm interested to know if any surgery is

> possible

> > > at this stage. Anybody have any advice for me?

> >

> > You aren't the only person in this group who is considering

ptosis

> > correction at an " advanced " age, so you're not alone. Not me, I'm

> all

> > done, but there's a guy about our age in sunny Texas (the state

in

> the

> > USA, not the NSW/QLD border town) considering having his ptosis

> fixed at

> > last.

> >

> > I seem to recall ptosis is a not-too-uncommon late-onset problem

> for old

> > folks, not just those who've had it all along like us. But I'm no

> doc,

> > so maybe you could ask your nearest occuloplastic bloke or

> ophthalmic

> > surgeon.

> >

> > > Thanks, and hugs!

> >

> > Much appreciated; it's winter over here in Oz. :-)

> >

> > Rob W

[Guest guest]

Hi, !

Yes, my slings (which were sterile cotton gauze back in the day...41

years ago), are not even now. My right eye is much droopier, and it

bothers me. It just slowly gave out over time.

What is the " bilateral lid muscle loop, " which your son had done? Is

this a new surgery, and where did he have it done? Is it something

that's expected to last for many years? Would you recommend it to

others?

Thanks!

Lynda

> > > Hi Loka,

> > >

> > > > I've just discovered this group as well. I just became a

member

> > > > yesterday. I'm glad to hear that there are Bleph adults

here. I

> > > > literally stumbled across this site when I was doing a

search

> > > > for " ptosis. " I'm 43, and I've had 3 surgeries as a child.

The

> > funny

> > > > thing is that my doctor and surgeon never used the " bleph "

word

> > to

> > > > me or my parents. I'm just wondering when this term came

into

> > being.

> > > > And did my doctor, 40 years ago, have any knowledge of this

> > > > condition? (Anyone else out there in this situation???)

> > >

> > > 40 years ago, when I was also having my surgeries (I'm 44),

the

> > > techniques to correct BPEI were pretty much still being worked

> > out.

> > > However, the scientific journal articles that I have from the

60s

> > (and

> > > the 50s, I think?) used the same terms that are used today -

at

> > least

> > > for the individual symptoms (ptosis, blepharophimois,

epicanthus

> > > inversus) if not for the collective BPEI syndrome as a whole.

> Like

> > you,

> > > my surgeon never named this thing. I had to specifically ask

him

> > (when I

> > > was in my 20s) " What is this called? " , and then he wrote it

down

> > for me.

> > > Back then, very few ophthalmic surgeons knew how to treat it,

> > although

> > > most would have known its symptoms' names (since they're less

> rare

> > as

> > > separate conditions, especially ptosis), and very few, even

> today,

> > ever

> > > see a case in their lives.

> > >

> > > Until I was about 7, nobody in Australia knew how to fix it,

> > although a

> > > few had a go at it, without much success. Then one surgeon

> > returned from

> > > studying in Britain (probably at Moorfields Hospital) and he

was

> > the

> > > only one within 12,000 miles (miles? what are those things

> again?)

> > able

> > > to turn me into the stunning beauty I am today (ha!).

> > >

> > > > Now, as an adult, I'm interested to know if any surgery is

> > possible

> > > > at this stage. Anybody have any advice for me?

> > >

> > > You aren't the only person in this group who is considering

> ptosis

> > > correction at an " advanced " age, so you're not alone. Not me,

I'm

> > all

> > > done, but there's a guy about our age in sunny Texas (the

state

> in

> > the

> > > USA, not the NSW/QLD border town) considering having his

ptosis

> > fixed at

> > > last.

> > >

> > > I seem to recall ptosis is a not-too-uncommon late-onset

problem

> > for old

> > > folks, not just those who've had it all along like us. But I'm

no

> > doc,

> > > so maybe you could ask your nearest occuloplastic bloke or

> > ophthalmic

> > > surgeon.

> > >

> > > > Thanks, and hugs!

> > >

> > > Much appreciated; it's winter over here in Oz. :-)

> > >

> > > Rob W

[Guest guest]

Hi Lynda. Neat to get your reply. My son had the ptosis only like

me but with 25 years between his op and my first one, the methods

changed. (son) has no side effects to the bilateral muscle

tied loop, was in hospital 1/2 day ( 1984) and back at school in 2

days. No pain, stitches or dry eye concerns, and probably won't need

attention again. When he's tired the drop shows a little. where as

I have lactilube nightly or risk another ulcer scrap. Horrible!. Mr

Tarr operates both privately/publicly here in Christchurch

New Zealand and is an eye specialist whereas my surgeon was Mr Burns

(deceased now) and a plastic surgeon. I would like to have some

adjustments for visual as much as eye pain but need to research

before I ask. My slings are plastic but one has come undone and the

other too tight. The muscle tie I would recommend over cutting

natural muscles any day and leaves room for further adjustment of the

same technique. Once a muscle is cut its stuffed I think but this is

my own experience. I saw Dr Jenna Wales 10 years before had

his op and he said then that no further work should take place on my

eye but that is now 30 year old info. I'm hoping there is something

for me now.

> > > > Hi Loka,

> > > >

> > > > > I've just discovered this group as well. I just became a

> member

> > > > > yesterday. I'm glad to hear that there are Bleph adults

> here. I

> > > > > literally stumbled across this site when I was doing a

> search

> > > > > for " ptosis. " I'm 43, and I've had 3 surgeries as a child.

> The

> > > funny

> > > > > thing is that my doctor and surgeon never used the " bleph "

> word

> > > to

> > > > > me or my parents. I'm just wondering when this term came

> into

> > > being.

> > > > > And did my doctor, 40 years ago, have any knowledge of this

> > > > > condition? (Anyone else out there in this situation???)

> > > >

> > > > 40 years ago, when I was also having my surgeries (I'm 44),

> the

> > > > techniques to correct BPEI were pretty much still being

worked

> > > out.

> > > > However, the scientific journal articles that I have from the

> 60s

> > > (and

> > > > the 50s, I think?) used the same terms that are used today -

> at

> > > least

> > > > for the individual symptoms (ptosis, blepharophimois,

> epicanthus

> > > > inversus) if not for the collective BPEI syndrome as a whole.

> > Like

> > > you,

> > > > my surgeon never named this thing. I had to specifically ask

> him

> > > (when I

> > > > was in my 20s) " What is this called? " , and then he wrote it

> down

> > > for me.

> > > > Back then, very few ophthalmic surgeons knew how to treat it,

> > > although

> > > > most would have known its symptoms' names (since they're less

> > rare

> > > as

> > > > separate conditions, especially ptosis), and very few, even

> > today,

> > > ever

> > > > see a case in their lives.

> > > >

> > > > Until I was about 7, nobody in Australia knew how to fix it,

> > > although a

> > > > few had a go at it, without much success. Then one surgeon

> > > returned from

> > > > studying in Britain (probably at Moorfields Hospital) and he

> was

> > > the

> > > > only one within 12,000 miles (miles? what are those things

> > again?)

> > > able

> > > > to turn me into the stunning beauty I am today (ha!).

> > > >

> > > > > Now, as an adult, I'm interested to know if any surgery is

> > > possible

> > > > > at this stage. Anybody have any advice for me?

> > > >

> > > > You aren't the only person in this group who is considering

> > ptosis

> > > > correction at an " advanced " age, so you're not alone. Not me,

> I'm

> > > all

> > > > done, but there's a guy about our age in sunny Texas (the

> state

> > in

> > > the

> > > > USA, not the NSW/QLD border town) considering having his

> ptosis

> > > fixed at

> > > > last.

> > > >

> > > > I seem to recall ptosis is a not-too-uncommon late-onset

> problem

> > > for old

> > > > folks, not just those who've had it all along like us. But

I'm

> no

> > > doc,

> > > > so maybe you could ask your nearest occuloplastic bloke or

> > > ophthalmic

> > > > surgeon.

> > > >

> > > > > Thanks, and hugs!

> > > >

> > > > Much appreciated; it's winter over here in Oz. :-)

> > > >

> > > > Rob W

[Guest guest]

Hi there,

Is this person who wrote to in this last message from Christchurch? My name is Leanne, my husband and I

have 2 son's, Tyler 6 1/2, born w/out bleph, and our 2nd son Ethan 2 1/2, born with bleph. Are you from Christchurch and live here?

If so would like to chat with you, may-be even meet you, we have only ever met in person Maree and , a mother and

daughter fron Tauranga both with bleph. It would be nice to meet someone else in person with bleph:) Ethan has had no surgeries yet,

he see's Dr weatherhead once a year now, and he say's his sight is fine, he has never had a head, chin-up posture to see.

Do you have a son with bleph also??? E-mail me back, look forward to hearing from you:)

Leanne CHCH.

-- blepharophimosis Re: Older ptosis (was: celine 19yr old english girl with condition!)

Hi Lynda. Neat to get your reply. My son had the ptosis only like

me but with 25 years between his op and my first one, the methods

changed. (son) has no side effects to the bilateral muscle

tied loop, was in hospital 1/2 day ( 1984) and back at school in 2

days. No pain, stitches or dry eye concerns, and probably won't need

attention again. When he's tired the drop shows a little. where as

I have lactilube nightly or risk another ulcer scrap. Horrible!. Mr

Tarr operates both privately/publicly here in Christchurch

New Zealand and is an eye specialist whereas my surgeon was Mr Burns

(deceased now) and a plastic surgeon. I would like to have some

adjustments for visual as much as eye pain but need to research

before I ask. My slings are plastic but one has come undone and the

other too tight. The muscle tie I would recommend over cutting

natural muscles any day and leaves room for further adjustment of the

same technique. Once a muscle is cut its stuffed I think but this is

my own experience. I saw Dr Jenna Wales 10 years before had

his op and he said then that no further work should take place on my

eye but that is now 30 year old info. I'm hoping there is something

for me now.

> > > > Hi Loka,

> > > >

> > > > > I've just discovered this group as well. I just became a

> member

> > > > > yesterday. I'm glad to hear that there are Bleph adults

> here. I

> > > > > literally stumbled across this site when I was doing a

> search

> > > > > for "ptosis." I'm 43, and I've had 3 surgeries as a child.

> The

> > > funny

> > > > > thing is that my doctor and surgeon never used the "bleph"

> word

> > > to

> > > > > me or my parents. I'm just wondering when this term came

> into

> > > being.

> > > > > And did my doctor, 40 years ago, have any knowledge of this

> > > > > condition? (Anyone else out there in this situation???)

> > > >

> > > > 40 years ago, when I was also having my surgeries (I'm 44),

> the

> > > > techniques to correct BPEI were pretty much still being

worked

> > > out.

> > > > However, the scientific journal articles that I have from the

> 60s

> > > (and

> > > > the 50s, I think?) used the same terms that are used today -

> at

> > > least

> > > > for the individual symptoms (ptosis, blepharophimois,

> epicanthus

> > > > inversus) if not for the collective BPEI syndrome as a whole.

> > Like

> > > you,

> > > > my surgeon never named this thing. I had to specifically ask

> him

> > > (when I

> > > > was in my 20s) "What is this called?", and then he wrote it

> down

> > > for me.

> > > > Back then, very few ophthalmic surgeons knew how to treat it,

> > > although

> > > > most would have known its symptoms' names (since they're less

> > rare

> > > as

> > > > separate conditions, especially ptosis), and very few, even

> > today,

> > > ever

> > > > see a case in their lives.

> > > >

> > > > Until I was about 7, nobody in Australia knew how to fix it,

> > > although a

> > > > few had a go at it, without much success. Then one surgeon

> > > returned from

> > > > studying in Britain (probably at Moorfields Hospital) and he

> was

> > > the

> > > > only one within 12,000 miles (miles? what are those things

> > again?)

> > > able

> > > > to turn me into the stunning beauty I am today (ha!).

> > > >

> > > > > Now, as an adult, I'm interested to know if any surgery is

> > > possible

> > > > > at this stage. Anybody have any advice for me?

> > > >

> > > > You aren't the only person in this group who is considering

> > ptosis

> > > > correction at an "advanced" age, so you're not alone. Not me,

> I'm

> > > all

> > > > done, but there's a guy about our age in sunny Texas (the

> state

> > in

> > > the

> > > > USA, not the NSW/QLD border town) considering having his

> ptosis

> > > fixed at

> > > > last.

> > > >

> > > > I seem to recall ptosis is a not-too-uncommon late-onset

> problem

> > > for old

> > > > folks, not just those who've had it all along like us. But

I'm

> no

> > > doc,

> > > > so maybe you could ask your nearest occuloplastic bloke or

> > > ophthalmic

> > > > surgeon.

> > > >

> > > > > Thanks, and hugs!

> > > >

> > > > Much appreciated; it's winter over here in Oz. :-)

> > > >

> > > > Rob W