operations

[Guest guest]

i have been reading all your emails and i find it hard to believe

alot of you have had 5 or 10 or 15 operations ... i went to a local

hospital in cornwall first of all they didnt know much about bpes to

begin with well my family and i educated them on it lol as we seem to

know much about it then some doctors if you know what i mean .....

then off to moorfields eye hosp in london for my big op when i was 16

thats two operations i had ...... my son was born with bpes , off to

moorfields .... one op .......... my daughter the same ...... so for

those of you that had loads of ops i really feel for you and your

familys ...... so why do the other hospitals hav to do some many

operations ? its worrying

[Guest guest]

Hi ,

Welcome aboard.

> i have been reading all your emails and i find it hard to believe

> alot of you have had 5 or 10 or 15 operations ...

BPEI can express itself to very varying degrees. Some people (my father,

for example) live their whole lives without realising they have BPEI.

Others have severe BPEI, with all its symptoms, plus a whole lot more

for good measure. Those are the 10-15 operation folks. A " typical "

BPEI-enhanced person (is there such a thing?) might have maybe 5-7

operations.

It also depends on when the operations were performed: techniques these

days are more settled than they were 30-40 years ago when surgeons were

still experimenting and being cautious.

And, of course, there's the old lottery of striking an experienced and

knowledgeable surgeon (at, say, fields) who knows what they're

doing, as opposed to the average hacker who wants to learn about BPEI

and add it to their CV (at, perhaps, Cornwall). Better sugeons can get

it right the first time and sometimes combine operations they're

familiar with.

> i went to a local

> hospital in cornwall first of all they didnt know much about bpes to

> begin with well my family and i educated them on it lol as we seem to

> know much about it then some doctors if you know what i mean .....

Absolutely. It's a rare enough condition that most ophthalmic surgeons

will never see a case of BPEI in their lives. Other medicos will never

have even heard of it, and will be hard-pressed to even define ptosis,

epicanthus inversus, etc.

> then off to moorfields eye hosp in london for my big op when i was 16

> thats two operations i had ...... my son was born with bpes , off to

> moorfields .... one op .......... my daughter the same ...... so for

> those of you that had loads of ops i really feel for you and your

> familys ...... so why do the other hospitals hav to do some many

> operations ? its worrying

You went to the right place. fields has been at the forefront of

BPEI treament and research for decades. My own surgeon trained there in

the '60s, and on his return to Australia he was the only man in the

country who had a clue how to treat BPEI. For my son, we found a surgeon

in Sydney who had done paediatric ectropion/trichiasis repair research

at, you guessed it, fields. And I've met (in the flesh) others in

this forum whose results at fields have been excellent.

Do you and your offspring have fairly light or straightforward BPEI

symptoms? That might also reduce the number of ops required.

Anyway, that's enough of my random ramblings.

Rob