Comments on: PHPV: my perfect deformity http://veneratedcoconut.com/2010/03/14/phpv-persistent-hyperplastic-primary-vitreous/ {a travelogue through life} Mon, 30 Apr 2012 02:27:50 +0000 hourly 1 http://wordpress.org/?v=3.3.2 By: Anastasia http://veneratedcoconut.com/2010/03/14/phpv-persistent-hyperplastic-primary-vitreous/#comment-100 Anastasia Mon, 23 May 2011 15:42:03 +0000 http://kirtiklis.com/?p=1628#comment-100 Thanks for the update, Sasha. Keep us updated on how it all goes! It's a pleasure. ~A Thanks for the update, Sasha. Keep us updated on how it all goes! It’s a pleasure. ~A

]]> By: Sasha Burnside http://veneratedcoconut.com/2010/03/14/phpv-persistent-hyperplastic-primary-vitreous/#comment-99 Sasha Burnside Mon, 16 May 2011 20:40:21 +0000 http://kirtiklis.com/?p=1628#comment-99 So the docter described an operation where they loosen the muscles on the outer side of the eye and tighten the ones on the inner of it. Basicaly bringing the affected eye more central. She said it was just one, simple op so it's likely I'll get that in a few months time. The docter then also said that if I want it to look even more similar they could put a lens in it (a bit more practical than a glass eye). Thanks very much for all the advice and info! So the docter described an operation where they loosen the muscles on the outer side of the eye and tighten the ones on the inner of it. Basicaly bringing the affected eye more central. She said it was just one, simple op so it’s likely I’ll get that in a few months time. The docter then also said that if I want it to look even more similar they could put a lens in it (a bit more practical than a glass eye). Thanks very much for all the advice and info!

]]> By: Anastasia http://veneratedcoconut.com/2010/03/14/phpv-persistent-hyperplastic-primary-vitreous/#comment-98 Anastasia Sat, 07 May 2011 22:13:26 +0000 http://kirtiklis.com/?p=1628#comment-98 Yes, my eye doctor always insisted on polycarbonate lenses, especially for playing tennis, etc. Now these are the norm for lenses, most usually. I tend to prefer less treatment than more, but my eye isn't that dramatic, I don't think. Some docs go the cautious route, and insist that glasses are safer because they protect the eye and there's no risk for infection as with contacts. Other doctors go the cosmetic route, not least because there is money to be made in it in the states. :-/ Yes, keep us up on your options. Great to hear from you!! Yes, my eye doctor always insisted on polycarbonate lenses, especially for playing tennis, etc. Now these are the norm for lenses, most usually. I tend to prefer less treatment than more, but my eye isn’t that dramatic, I don’t think. Some docs go the cautious route, and insist that glasses are safer because they protect the eye and there’s no risk for infection as with contacts. Other doctors go the cosmetic route, not least because there is money to be made in it in the states.
:-/ Yes, keep us up on your options. Great to hear from you!!

]]> By: Sasha Burnside http://veneratedcoconut.com/2010/03/14/phpv-persistent-hyperplastic-primary-vitreous/#comment-97 Sasha Burnside Sat, 07 May 2011 13:32:21 +0000 http://kirtiklis.com/?p=1628#comment-97 Thanks yeah I am on facebook so I'll check that out. I lived in the states for about three years and one thing they said to me far more than the docter in England was that they highly reccomend getting poly carbonate glasses to protect my good eye. I have got some after recently having an accident with my bad eye where I got struck. I got a mild femur and the pressure is still high but I'm OK. I just thought that if I accidently got caught in my good eye I could of been in a bit of trouble with my sight. I'm still going to the docters to get the eye looked at so next time I go I'll ask about options with them and give you an update. :) Thanks yeah I am on facebook so I’ll check that out. I lived in the states for about three years and one thing they said to me far more than the docter in England was that they highly reccomend getting poly carbonate glasses to protect my good eye. I have got some after recently having an accident with my bad eye where I got struck. I got a mild femur and the pressure is still high but I’m OK. I just thought that if I accidently got caught in my good eye I could of been in a bit of trouble with my sight. I’m still going to the docters to get the eye looked at so next time I go I’ll ask about options with them and give you an update. :)

]]> By: Anastasia http://veneratedcoconut.com/2010/03/14/phpv-persistent-hyperplastic-primary-vitreous/#comment-96 Anastasia Sat, 07 May 2011 12:07:08 +0000 http://kirtiklis.com/?p=1628#comment-96 Hi Sasha, Thanks for the comment. I know Corey had the stabsimus surgery. I've never heard of someone with PHPV getting a glass eye, but really don't know. Are you on facebook? There is a PHPV group there which might have something to say, though I find that most activity on the internet is from parents who have babies with PHPV and are upset and looking for info. It's much more rare to hear from someone who has it. It would be interesting to know how different the treatment is in the UK as well. Very different medical system. Best, A Hi Sasha, Thanks for the comment. I know Corey had the stabsimus surgery. I’ve never heard of someone with PHPV getting a glass eye, but really don’t know. Are you on facebook? There is a PHPV group there which might have something to say, though I find that most activity on the internet is from parents who have babies with PHPV and are upset and looking for info. It’s much more rare to hear from someone who has it. It would be interesting to know how different the treatment is in the UK as well. Very different medical system. Best, A

]]> By: Sasha Burnside http://veneratedcoconut.com/2010/03/14/phpv-persistent-hyperplastic-primary-vitreous/#comment-95 Sasha Burnside Fri, 06 May 2011 23:04:15 +0000 http://kirtiklis.com/?p=1628#comment-95 I'm Sasha, I'm fourteen and I have PHPV. Because this case is very rare it's difficult to find much about it on the internet but can any of you tell me any options I have? I've heard about an op I could get which joins the muscles in the eye so they move together and in the same direction. I've also heard about mordern day glass eyes which look and feel great but I'm still slightly confused by all this. Any help? I’m Sasha, I’m fourteen and I have PHPV. Because this case is very rare it’s difficult to find much about it on the internet but can any of you tell me any options I have? I’ve heard about an op I could get which joins the muscles in the eye so they move together and in the same direction. I’ve also heard about mordern day glass eyes which look and feel great but I’m still slightly confused by all this. Any help?

]]> By: Anastasia http://veneratedcoconut.com/2010/03/14/phpv-persistent-hyperplastic-primary-vitreous/#comment-94 Anastasia Wed, 09 Mar 2011 12:59:56 +0000 http://kirtiklis.com/?p=1628#comment-94 Hi Corey, thanks for the comment. I don't do anything for my PHPV short of getting an annual exam. I could arguably use stabsimus surgery, but it's never been suggested and prefer the least invasive treatment possible. Being upside-down increases eye pressure. I will drop you an email. ~A Hi Corey, thanks for the comment. I don’t do anything for my PHPV short of getting an annual exam. I could arguably use stabsimus surgery, but it’s never been suggested and prefer the least invasive treatment possible. Being upside-down increases eye pressure. I will drop you an email. ~A

]]> By: Corey http://veneratedcoconut.com/2010/03/14/phpv-persistent-hyperplastic-primary-vitreous/#comment-93 Corey Wed, 09 Mar 2011 03:46:15 +0000 http://kirtiklis.com/?p=1628#comment-93 Hey, Im 24 and have PHPV... I notice lately I have been getting red eye and increased pressure... I have recently had a successful stabsimus surgery and have eyes that are fairly close in size and color but not perfect by anymeans It would be nice to talk more over email about what you are currently doing for your PHPV... Also did you say its not good to go upside-down? im confused about that... hmm Hey, Im 24 and have PHPV… I notice lately I have been getting red eye and increased pressure… I have recently had a successful stabsimus surgery and have eyes that are fairly close in size and color but not perfect by anymeans

It would be nice to talk more over email about what you are currently doing for your PHPV… Also did you say its not good to go upside-down? im confused about that… hmm

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