Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 Thanks for the welcome, . Wow, you really were far from home. When I was growing up our favorite mexican restrauant was in Camarillo. That is so cool about yopu meeting Mickey Rooney. It's hard to go anywhere down south without meeting or seeing someone, lol. I went to high school with Kurt . He was working for Disney at the time. He lived just a few blocks from me. My hobby now is to write to the stars and ask for autographed photos. I have over 120 now. It's alot of fun and it puts something exciting in my life. Take care of yourself, Susi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 grandphant wrote: > I didn't have the ability to > open my eyes at all untill the first surgery. .... > I was quite shocked to know that some of the messages I've read talked about > surgeries being performed much later than mine and I wondered how that > worked. Apparently there are varied degrees of the condition. Some people delay their surgery (e.g. ptosis repair) until later in life, perhaps because the skills to correct it weren't available when they were young, or their parents couldn't afford it (plastic surgery is expensive in some countries) or were philosophically opposed to it. Others need some fine-tuning as they age (e.g. I had a tear-duct placement adjusted when I was about 24, twenty-mumble years ago). And yes, you're right about the differing degrees of expression. My father's and son's BPES were/are (respectively) barely detectable unless one knew what to look for, but I got the whole box'n'dice. > Through my > surgery I was given the ability to hold my eyes open with my forhead( at > least that's how I understood it) I'm legally blind as well and am very > interested to know if the two go hand and hand or if I was the lucky > winner of that gift. I've not seen anything about blindness being usually associated with BPES. If you couldn't open your eyes at all until your first surgery at 6 months, perhaps that was a factor? These days, surgeons do immediate intervention (i.e. frontalis sling) when vision is affected by ptosis, specifically to enable vision to develop. > I also recently read a study linking female > infertility to blepharophimosis and worry I also have that to deal with. There's a very strong relationship twixt premature ovarian failure and BPES. You'll see plenty of discussion about it here. But not from me, I'm somewhat disinterested - but not uninterested - being gonadically contradictory, if you catch my drift. > Thanks again for the welcome! I look forward to rambling on to anyone > who'll listen and listen to anyone who wants to ramble! In the words of Page & Plant, " Ramble On " . (Oops, showing my age there. D'oh!) Rob W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Hi Bryony Hello, my daughter has one watery eye, mr collin looked at her tear ducts, apparently she has two tear ducts on one eye, and one tear duct on the other. Mr collin said this is unusual because people can have two tear ducts on each eye with BPES, but not usually only on one. I havent done any research into this, i just heard what he said, he asked if it was a problem, we said no, so nothing more was done. (assuming as he asked the question - something can be done). hope this helps. clare herts uk Bryony <bryony2@...> wrote: Oh I have watery eyes too and it drives me NUTS!! Can this be sorted?? From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of grandphantSent: 30 March 2006 14:26blepharophimosis Subject: blepharophimosis Re: thanks for the welcome > > I didn't have the ability to > > open my eyes at all untill the first surgery.> ...> > I was quite shocked to know that some of the messages I've read talked about > > surgeries being performed much later than mine and I wondered how that > > worked. Apparently there are varied degrees of the condition.> > Some people delay their surgery (e.g. ptosis repair) until later in > life, perhaps because the skills to correct it weren't available when > they were young, or their parents couldn't afford it (plastic surgery is > expensive in some countries) or were philosophically opposed to it. > Others need some fine-tuning as they age (e.g. I had a tear-duct > placement adjusted when I was about 24, twenty-mumble years ago).> > And yes, you're right about the differing degrees of expression. My > father's and son's BPES were/are (respectively) barely detectable unless > one knew what to look for, but I got the whole box'n'dice.> > > Through my > > surgery I was given the ability to hold my eyes open with my forhead( at > > least that's how I understood it) I'm legally blind as well and am very > > interested to know if the two go hand and hand or if I was the lucky > > winner of that gift.> > I've not seen anything about blindness being usually associated with > BPES. If you couldn't open your eyes at all until your first surgery at > 6 months, perhaps that was a factor? These days, surgeons do immediate > intervention (i.e. frontalis sling) when vision is affected by ptosis, > specifically to enable vision to develop.> > > I also recently read a study linking female > > infertility to blepharophimosis and worry I also have that to deal with. > > There's a very strong relationship twixt premature ovarian failure and > BPES. You'll see plenty of discussion about it here. But not from me, > I'm somewhat disinterested - but not uninterested - being gonadically > contradictory, if you catch my drift.> > > Thanks again for the welcome! I look forward to rambling on to anyone > > who'll listen and listen to anyone who wants to ramble!> > In the words of Page & Plant, "Ramble On". (Oops, showing my age there. > D'oh!)> > Rob W>Hello Rob W. thank you for responding! In regards to how others could wait for the surgery.........I hope I didn't offend anyone with my narrow understanding of bleph. Rereading what I wrote, I sound a little judgemental. I'll admit to being mental (laugh out loud) but wasn't judging anyone at all. Like I said I've never known anyone else with this and only had my own experience to relate to. I just wanted to be sure I wasn't comming off like a snob. Thank you for the insights!My eyes water like crazy mostly outside or in places with fluorescent lighting, did your tear duct replacement have anything to do with over active tear ducts?Take careJackie --No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.385 / Virus Database: 268.3.3/296 - Release Date: 29/03/2006 --No virus found in this outgoing message.Checked by AVG Free Edition.Version: 7.1.385 / Virus Database: 268.3.3/296 - Release Date: 29/03/2006 Messenger with Voice. PC-to-Phone calls for ridiculously low rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Hi Clare Mr Collin did all of my surgeries at Great Ormond Street. Apparently I have leaky tear ducts (this is the technical term J ). I have a feeling this is something I will have to live with, it’s annoying when people keep asking if I am crying! Thanks for your reply B x From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of Clare Teale Sent: 31 March 2006 10:48 blepharophimosis Subject: RE: blepharophimosis Re: thanks for the welcome Hi Bryony Hello, my daughter has one watery eye, mr collin looked at her tear ducts, apparently she has two tear ducts on one eye, and one tear duct on the other. Mr collin said this is unusual because people can have two tear ducts on each eye with BPES, but not usually only on one. I havent done any research into this, i just heard what he said, he asked if it was a problem, we said no, so nothing more was done. (assuming as he asked the question - something can be done). hope this helps. clare herts uk Bryony <bryony2@...> wrote: Oh I have watery eyes too and it drives me NUTS!! Can this be sorted?? From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of grandphant Sent: 30 March 2006 14:26 blepharophimosis Subject: blepharophimosis Re: thanks for the welcome > > I didn't have the ability to > > open my eyes at all untill the first surgery. > ... > > I was quite shocked to know that some of the messages I've read talked about > > surgeries being performed much later than mine and I wondered how that > > worked. Apparently there are varied degrees of the condition. > > Some people delay their surgery (e.g. ptosis repair) until later in > life, perhaps because the skills to correct it weren't available when > they were young, or their parents couldn't afford it (plastic surgery is > expensive in some countries) or were philosophically opposed to it. > Others need some fine-tuning as they age (e.g. I had a tear-duct > placement adjusted when I was about 24, twenty-mumble years ago). > > And yes, you're right about the differing degrees of expression. My > father's and son's BPES were/are (respectively) barely detectable unless > one knew what to look for, but I got the whole box'n'dice. > > > Through my > > surgery I was given the ability to hold my eyes open with my forhead( at > > least that's how I understood it) I'm legally blind as well and am very > > interested to know if the two go hand and hand or if I was the lucky > > winner of that gift. > > I've not seen anything about blindness being usually associated with > BPES. If you couldn't open your eyes at all until your first surgery at > 6 months, perhaps that was a factor? These days, surgeons do immediate > intervention (i.e. frontalis sling) when vision is affected by ptosis, > specifically to enable vision to develop. > > > I also recently read a study linking female > > infertility to blepharophimosis and worry I also have that to deal with. > > There's a very strong relationship twixt premature ovarian failure and > BPES. You'll see plenty of discussion about it here. But not from me, > I'm somewhat disinterested - but not uninterested - being gonadically > contradictory, if you catch my drift. > > > Thanks again for the welcome! I look forward to rambling on to anyone > > who'll listen and listen to anyone who wants to ramble! > > In the words of Page & Plant, " Ramble On " . (Oops, showing my age there. > D'oh!) > > Rob W > Hello Rob W. thank you for responding! In regards to how others could wait for the surgery.........I hope I didn't offend anyone with my narrow understanding of bleph. Rereading what I wrote, I sound a little judgemental. I'll admit to being mental (laugh out loud) but wasn't judging anyone at all. Like I said I've never known anyone else with this and only had my own experience to relate to. I just wanted to be sure I wasn't comming off like a snob. Thank you for the insights! My eyes water like crazy mostly outside or in places with fluorescent lighting, did your tear duct replacement have anything to do with over active tear ducts? Take care Jackie -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.385 / Virus Database: 268.3.3/296 - Release Date: 29/03/2006 -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.385 / Virus Database: 268.3.3/296 - Release Date: 29/03/2006 Messenger with Voice. PC-to-Phone calls for ridiculously low rates. -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.385 / Virus Database: 268.3.3/298 - Release Date: 30/03/2006 -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.385 / Virus Database: 268.3.3/298 - Release Date: 30/03/2006 Quote Link to comment Share on other sites More sharing options...
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