Guest guest Posted May 21, 1999 Report Share Posted May 21, 1999 My Goodness! This is exactly the reason why NF2 DR's need to be in touch with each other more! Spread the info around a little ya know! I was told that it was called retinal hamirtomas! (sp?) I too have problems with vision, one side blind. My eye DR's ALWAYS do the " hey Dr. Blah blah come look at this! " When I was diagnosed I specifically asked my AZ NF2 DR & Dr Brackmann if my one sided blindness had anything to do with NF2, they're reply " Oh no, don't worry about it " HAHA Well about two weeks after this answer I was reading an article by Mia McCollin, guess what I saw? " Very typical with some NF2 patients to have scarring on the retina. This is referred to as...retinal hemirtoma " Well I took the article to both DR's and said " SEE! I KNOW SOME THINGS MAN!!!! " ) They don't try to act like they are the " all-knowing " with me anymore. An " I don't know " answer is much better to me than a BS answer. Anyway I think we've all concluded that most of these weird eye problems are from NF2, that's pretty apparent since I can count at least 10 of you with the exact same thing as me and before I knew of no one ) Hugs, in AZ << --- Marie Drew wrote: > Maybe I am wrong, but I thought Lisch nodules were NF1 and that subcapsular lens > opacities were NF2? Marie __________ I think you are right, Marie. In my case, the absence of lisch nodules seem to disappoint my neuro-opth. I had plain old scarring that may or not be associated with NF2. He said a virus or foreign organism could cause it. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 1999 Report Share Posted May 21, 1999 Maybe I am wrong, but I thought Lisch nodules were NF1 and that subcapsular lens opacities were NF2? Marie Vesely, wrote: > > > NF2 is manifested, in part, by " Lisch Nodules " on retina. Perhaps with NF2 > being so rare, this accounts for the eye doctors excitement (they have never > seen Lisch Nodules). > > V. > > ------------------------------------------------------------------------ > ONElist members are using Shared Files in great ways! > http://www.onelist.com > Are you? If not, see our homepage for details. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 1999 Report Share Posted May 21, 1999 --- Marie Drew wrote: > Maybe I am wrong, but I thought Lisch nodules were NF1 and that subcapsular lens > opacities were NF2? Marie __________ I think you are right, Marie. In my case, the absence of lisch nodules seem to disappoint my neuro-opth. I had plain old scarring that may or not be associated with NF2. He said a virus or foreign organism could cause it. --- and Christi Waldrip wrote: > 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? , I am glad you liked the NF2 Clinic at TCH. It is nice to have it all the specialists in one office. It is weird as an adult since all the blood pressure cuffs, etc. are for little kids, so they have to go in search of eqpt for grownups. The doctors were nice though. is one of the best neuro-opthamologists in town. In answer to your question, my eyes went haywire as a result of too much spinal fluid production. I had terrible headaches and I was seeing double which quickly progressed to nausea, vomiting, etc. At first they thought I might have a brain tumor so they did an MRI. No tumor. Actually they just missed it and another radiologist found it on the scan 3 years later. But at the time they said no tumor. I had the evoked response testing. My pressure was still very high and they could tell that by what they call " venus pulsations " in my eyes. I looked major stoned too all the time. My eyes were so dilated on stop and did not reposnd normally to light and dark. Next step was a spinal tap which showed major pressure. Fluid was analyzed to rule out multiple sclerosis. So many spinal taps followed by Decadron followed. Very sick, etc. etc. Their diagnosis was pseudotumor cerebri. 6 months later my vision was returning to normal. I have been very lucky to not have a reoccurrence of that. Later when diagnosed with NF2 they kind of put it all together. My neuro now says that pseudotumor cerebri is very rare. When your spinal fluid gets out of whack there is usually a reason. I am sorry they found a problem with Reagan. I am glad you are going to be checked out too. I am glad too that you are going there. He checked my little girl too. Lee and Tang are two other top notch neuro-opths in Houston if you get into the 2nd opinion mode. They are very good. Jordan uses Lee and I use Tang at Hermann. She is my only non-Baylor doc. Hope this helps, Kim _____________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 1999 Report Share Posted May 21, 1999 Misha64@... wrote: > My eye DR's ALWAYS do the " hey Dr. Blah blah come look at this! " Yeah, don't you just love being a rarity? We need to start charging THEM to see us! Hey, there's an idea for ! ( you cracked me up on the urine idea...) 's comment reminded me of The Far Side... any Larson fans out there? What about the one where they are doing brain surgery and they make the guy's leg shoot up... And Earl--way to go with the RT! I agree... someone has to be " first " and it will be so much easier for people coming up behind you. If " ADA " doesn't work to get the needed educational accomodations, people can also try using Section 504 of the Rehabilitation Act of 1973(date?), too. Glad to hear you chipped-away at the wall! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 1999 Report Share Posted May 21, 1999 My husband Craig has scarring and retinal hematomas (sp?) as well. Dr. Levine at HEI put in a spring in '90 when he had his right AN out...and both Drs. Brackmann and Levine thought it would be temporary (the facial paralysis and eye problems). Both were not temporary and now his right eye is scarred, dry, irritated and he has had the spring readjusted several times. With a tumor behind his " good " eye, drs. don't want to touch it as to jeopardize losing more vision. We just moved here (CA) and going through getting Craig a drivers license with his eye has been interesting... T. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 1999 Report Share Posted May 22, 1999 >'s comment reminded me of The Far Side... any Larson fans out there? >What about the one where they are doing brain surgery and they make the guy's leg shoot >up... I was about 13 when I picked up a book in the bookstore and saw the cartoon with four cowboys sitting around a campfire eating- one has a disgusted look on his face and is holding up a lizard above his bowl, and the chef says, " Dang! Blender must have missed that one! " I was hooked for life! I have EVERY Larson book, including his newest (about a year old), non-Far Side book, " There's a Hair in my Dirt! " I also collect Bill Watterson books ( " Calvin and Hobbes " )..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 1999 Report Share Posted May 23, 1999 Did you ever see " COW TOOLS " ??? and Christi Waldrip wrote: > > > >'s comment reminded me of The Far Side... any Larson fans out > there? > >What about the one where they are doing brain surgery and they make the > guy's leg shoot > >up... > > I was about 13 when I picked up a book in the bookstore and saw the cartoon > with four cowboys sitting around a campfire eating- one has a disgusted > look on his face and is holding up a lizard above his bowl, and the chef > says, " Dang! Blender must have missed that one! " > > I was hooked for life! I have EVERY Larson book, including his newest > (about a year old), non-Far Side book, " There's a Hair in my Dirt! " > > I also collect Bill Watterson books ( " Calvin and Hobbes " )..... > > > > ------------------------------------------------------------------------ > ONElist: bringing the world together. > http://www.onelist.com > Join a new list today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 1999 Report Share Posted May 23, 1999 ----Original Message Follows---- >'s comment reminded me of The Far Side... any Larson fans out there? >What about the one where they are doing brain surgery and they make the guy's leg shoot >up... hahahah , I loved that one! Especially with the ballon that says, " hey hey hey Ned, check this out. All you have to do is put your finger here. " Mark ------------------------------------------------------------------------ ONElist: bringing the world together. http://www.onelist.com Join a new list today! _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
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