Guest guest Posted May 20, 1999 Report Share Posted May 20, 1999 Yes, I did in 93 by a neuro-opth. This was my pre-nf2 diagnosis days and I was having problems producing too much CSF and my eyesight went haywire as a result. Anyway, I have a scarred retina last time we looked but nothing else. The photo-taking did not hurt or irritate. She gave me slides to keep of each eye. Since then no one has been interested in them. Probably since my eyesight returned to normal thank goodness. I think it is great you are getting your eyes checked out so thoroughly. Jordan has always hammered it into me to be pro-eyecare and for good reason. TTFN, Kim --- Mybear7980@... - Kari wrote: > Has anybody else had pictures taken of their eyes? _____________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 1999 Report Share Posted May 20, 1999 The only experience I've had with tumors concerning the eyes are small tumors growing out of the 3rd cranial nerve. (The nerve that controls 'lens accommodation' I think?). Also, my pressure always seems to be high which means I'm always at risk for glaucoma so I have to go to the optomologist every 6 six months as well as the neurosurgeon. The other thing is that my eyes are extremely dry so I have to use artificial teardrops. Anyone else experience the high pressure in the eyes part? Thanks, Mark ----Original Message Follows---- Can you give me some elaboration on your experiences/problems with your eyes? Thanks! PS Thanks again for suggesting the NF2 clinic there. We really liked our experience there (well- as much as you can like taking your kid to the doctor). Re: Crew~ Eye pictures > > >Yes, I did in 93 by a neuro-opth. This was my pre-nf2 diagnosis days and I was having problems >producing too much CSF and my eyesight went haywire as a result. Anyway, I have a scarred retina >last time we looked but nothing else. The photo-taking did not hurt or irritate. She gave me >slides to keep of each eye. Since then no one has been interested in them. Probably since my >eyesight returned to normal thank goodness. I think it is great you are getting your eyes checked >out so thoroughly. Jordan has always hammered it into me to be pro-eyecare and for good reason. > >TTFN, >Kim > >--- Mybear7980@... - Kari wrote: >> Has anybody else had pictures taken of their eyes? >_____________________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 1999 Report Share Posted May 20, 1999 Apparently eye abnormalities are another of the common complications of NF-2. So when NIH checked me out a few years ago, Dr. Parry included a comprehensive eye examination among my battery of tests. I believe they were mainly looking for cataracts and something called " retinal hamartomas. " The extremely nice head ophthalmologist actually seemed a little disappointed when tests confirmed that my eyes and vision were fine. " Your eyes are non-performing, " she said. Steve Cherrington Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 1999 Report Share Posted May 20, 1999 Kim and Kari, Thanks for reminding me to go have my eyes tested as it is now over 12 months. One eye gets rather sore when I'v been on this computer for 10 hrs a day! Mind you sometimes I forget to change to my computer glasses and I forget to put drops in. " Forget " seems to come up quite a lot, sometimes I curse the short term memory loss since the Op. Re: Crew~ Eye pictures > > > Yes, I did in 93 by a neuro-opth. This was my pre-nf2 diagnosis days and I was having problems > producing too much CSF and my eyesight went haywire as a result. Anyway, I have a scarred retina > last time we looked but nothing else. The photo-taking did not hurt or irritate. She gave me > slides to keep of each eye. Since then no one has been interested in them. Probably since my > eyesight returned to normal thank goodness. I think it is great you are getting your eyes checked > out so thoroughly. Jordan has always hammered it into me to be pro-eyecare and for good reason. > > TTFN, > Kim > > --- Mybear7980@... - Kari wrote: > > Has anybody else had pictures taken of their eyes? > _____________________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 1999 Report Share Posted May 20, 1999 > They don't know how to explain what they see, but what > they see is something they don't usually see in others. > Has anybody else had pictures taken of their eyes? Yeah-- I think I have scar tissue around the retina, too. They have spent a lot of time looking at my beautiful brown eyes... usually bring in multiple residents to have a gander... One time, I went to the ER for one thing (totally unrelated to eyes) and they ended up concentrating mostly on the " unusual " aspect of them. I'm feeling a bit jealous of Kim--they did not give me souvenirs from my photo session! I think we've talked about this before... (I always have these vague memories of this stuff with no definitive info.!) The scarred retinas may not be common in the general pop., but may be quite common in NF2'ers. Oh, I also remember as a kid (when I was legally blind in one eye) that the eye dr. would spend a long time looking in them. This was before my diagnosis, but was perhaps a sign of the NF2 long before any loss of hearing. hmmm... Here I am past the stressful end-of-semester stuff and I'm coming down with a cold. Uugh! Thanks for the updates on the surgery folks! , any news on ? (or does anyone have news on Netta or Shira) Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 1999 Report Share Posted May 20, 1999 >Has anybody else had pictures taken of their eyes? > >Kari Amador Kari: I can't remember if I've had pictures taken of my eyes, but I have been through such extensive testing for my eyes (years ago) that I wonder what they were looking for. ) That is when the eye surgeon detected something behind my eyes that was causing pressure to them. Alas! It was that LARGE acoustic neuroma that I had removed in 1979. I still wonder why they spent so much time on my eyes. Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 1999 Report Share Posted May 20, 1999 > From: Mybear7980@... > > Dear Crew, > > > > Has anybody else had pictures taken of their eyes? > > Kari Amador > Rancho Cucamonga, California > the first thing the docs, even in emergency say is " oh mygosh. hey barb lookit at this will ya " its like bein inna FREAK SHOW> -speedy( wonders why the eye spot thang is so interesting) ________________________________________________________ NetZero - We believe in a FREE Internet. Shouldn't you? Get your FREE Internet Access and Email at http://www.netzero.net/download/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 1999 Report Share Posted May 20, 1999 Kim, Reagan and I are both getting our eyes checked by Dr. at Tx. Children's Hospital in early June. When we took Reagan in to get tested, Dr. checked her eyes and found a tumor on her retina, and also cataracts. He wants to check my eyes as well now. Can you give me some elaboration on your experiences/problems with your eyes? Thanks! PS Thanks again for suggesting the NF2 clinic there. We really liked our experience there (well- as much as you can like taking your kid to the doctor). Re: Crew~ Eye pictures > > >Yes, I did in 93 by a neuro-opth. This was my pre-nf2 diagnosis days and I was having problems >producing too much CSF and my eyesight went haywire as a result. Anyway, I have a scarred retina >last time we looked but nothing else. The photo-taking did not hurt or irritate. She gave me >slides to keep of each eye. Since then no one has been interested in them. Probably since my >eyesight returned to normal thank goodness. I think it is great you are getting your eyes checked >out so thoroughly. Jordan has always hammered it into me to be pro-eyecare and for good reason. > >TTFN, >Kim > >--- Mybear7980@... - Kari wrote: >> Has anybody else had pictures taken of their eyes? >_____________________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 1999 Report Share Posted May 21, 1999 I have pictures taken of my eyes every year, but that's because of my diabetes. A few years ago when they were trying to diagnose me, they sent me to see an eye specialist to check for pigmentation on the retina - apparently this is one of the ways they diagnose NF, in that 95% of NF sufferers have this pigmentation, although at that time they didn't differentiate between NF1 & NF2, so I'm not sure if the 95% applies to both conditions. Anyway, I didn't have any pigmentation, so they said I didn't have NF - I happily belived that until I got another tumour! Susie Quote Link to comment Share on other sites More sharing options...
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