Re: Re: BPES - Support in Australia

[Guest guest]

Hi Catharine,

> this is the first chance Ive had to sit here ( glass of wine in hand )

> and write an email. Bridget is a good baby but feeds every 3 hours so

> im a bit exhausted. Anyway , we are based in Canberra , so travelling

> to Sydney / Melbourne for surgery etc seems inevitable for Bridget.

Ahhh... Canberra - one of my favourite places. I know some other

BPES-enhanced folks in Canberra; I'll see if I can find their details

for you (it's been years since we corresponded).

> We had an eye exam to confirm diagnosis by Professor at

> Westmead - have you any dealings with him in the past?

is my ophthalmologist, and my son's (saw him yesterday for a

check-up, as it happens). Hasn't done any surgery on me, but has done an

entropion repair on Chris. He is one of THE BEST (since my previous

bloke retired - who trained ).

> We have also a peadiatrician in Canberra - Dr Ian Hufton , and we also

> have the referring opthamologist Dr Pluschke.

Don't know any Cannnnbra quacks, sorry.

> At present Im waiting to confirm if Bridget will have an " eyebrow

> suspension " done by in the next 2-3 weeks. Have you had /

> heard of such a procedure? We have some appointments next week and im

> going to ask for more info.

I had that frontalis sling operation back in the '60s, and it's still

holding up well. uses the same technique as my surgeon did (who

taught how to do it), and the same materials - fascia lata. They

connect the frontalis muscle (the forehead one, that one lifts one's

eyebrows with) to the lower edge of the eyelid, internally, via a strip

of fascia lata (tough slippery stuff from a thigh muscle) or silicone or

whatever. Just leaves a few small scars at the top of each eyebrow

(hidden by the brow hairs, especially if one has --esque brows

like me!). A Google search for 'frontalis sling ptosis' will turn up

plenty of confusing medical articles on how to do it. For example,

here's one that Shireen posted a link to on July 8:

http://www.emedicine.com/ent/topic97.htm

If you're seeing in his Macquarie St chambers, let me know - I

work in the CBD - and we can meet.

> Also - I noted that you have BPES in your family - do you know a

> geneticist we can contact ? As we have yet no idea if Bridget is Type

> 1 or 2 as yet.

We spoke (pre-procreation) to Professor Sillence (sp.?) at RAHC back

when it was still at Camperdown - not sure if he's still with RAHC at

Westmead (prob'ly retired) - but he'd never heard of BPEI until then.

With neither myself nor my son being of the female persuasion, I've

never really worried much about Type I vs Type II, but I can see why

you'd be interested. Maybe ask to recommend someone, or see

whoever's in the chair these days at Westmead.

> I feel like ive got a thousand questions to ask , but I will hold off

> for now , if its ok I will contact you again ?

Please do. If you want to chat, I'm in the phone book (RA & JC @ Pennant

Hills).

Some of us BPES-enhanced folks work in the city (hi Ky!), so if you're

ever in town we can arrange a mini-get-together some time.

Rob W

[Guest guest]

Hi Catharine, (And Rob!) In regards to seeing a geneticist, would you be willing to travel up to the Great Sunshine State? I saw a woman up there about ten years or so ago and she was quite knowledgeable... I'm sure i could dig up her name for you. I also saw a specialist (and I use that term loosely in regards to BPES) in Brisbane CBD called Tim Sullivan who might also be beneficial for you. There is also a gynecologist in Westmead Children's Hospital in Wade Ward (Works with Sue Towns, but the name escapes me!) who saw me and another young woman with BPES, maybe you should try to catch up with her while you're at it? And I've just found one of the bigger downsides to having lots of doctors - I always forget their

names! Let me know and I'll do some digging. Regards, Ky Rob <r.watson@...> wrote: Hi Catharine,> this is the first chance Ive had to sit here ( glass of wine in hand )> and write an email. Bridget is a good baby but feeds every 3 hours so> im a bit exhausted. Anyway , we are based in Canberra , so travelling> to Sydney / Melbourne for surgery etc seems inevitable for Bridget.Ahhh...

Canberra - one of my favourite places. I know some otherBPES-enhanced folks in Canberra; I'll see if I can find their detailsfor you (it's been years since we corresponded).> We had an eye exam to confirm diagnosis by Professor at> Westmead - have you any dealings with him in the past? is my ophthalmologist, and my son's (saw him yesterday for acheck-up, as it happens). Hasn't done any surgery on me, but has done anentropion repair on Chris. He is one of THE BEST (since my previousbloke retired - who trained ).> We have also a peadiatrician in Canberra - Dr Ian Hufton , and we also> have the referring opthamologist Dr Pluschke.Don't know any Cannnnbra quacks, sorry.> At present Im waiting to confirm if Bridget will have an "eyebrow> suspension" done by in the next 2-3 weeks. Have you had /> heard of such a procedure? We

have some appointments next week and im> going to ask for more info.I had that frontalis sling operation back in the '60s, and it's stillholding up well. uses the same technique as my surgeon did (whotaught how to do it), and the same materials - fascia lata. Theyconnect the frontalis muscle (the forehead one, that one lifts one'seyebrows with) to the lower edge of the eyelid, internally, via a stripof fascia lata (tough slippery stuff from a thigh muscle) or silicone orwhatever. Just leaves a few small scars at the top of each eyebrow(hidden by the brow hairs, especially if one has --esque browslike me!). A Google search for 'frontalis sling ptosis' will turn upplenty of confusing medical articles on how to do it. For example,here's one that Shireen posted a link to on July 8:http://www.emedicine.com/ent/topic97.htmIf you're seeing in his Macquarie St chambers, let me know - Iwork in the CBD - and we can meet.> Also - I noted that you have BPES in your family - do you know a> geneticist we can contact ? As we have yet no idea if Bridget is Type> 1 or 2 as yet.We spoke (pre-procreation) to Professor Sillence (sp.?) at RAHC backwhen it was still at Camperdown - not sure if he's still with RAHC atWestmead (prob'ly retired) - but he'd never heard of BPEI until then.With neither myself nor my son being of the female persuasion, I'venever really worried much about Type I vs Type II, but I can see whyyou'd be interested. Maybe ask to recommend someone, or seewhoever's in the chair these days at Westmead.> I feel like ive got a thousand questions to ask , but I will hold off> for now , if its

ok I will contact you again ?Please do. If you want to chat, I'm in the phone book (RA & JC @ PennantHills).Some of us BPES-enhanced folks work in the city (hi Ky!), so if you'reever in town we can arrange a mini-get-together some time.Rob W Send instant messages to your online friends http://au.messenger.