Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 Okay we just heard from out doctor who sent my sons eye pictures to a doctor in Houston and he too feels like my 20 week old has NF2. I guess my husband and I are hoping they are wrong. Okay he does have combined retinal-RPE hamartoma with a cateract. He is getting hearing cheeked on Monday but I think it is okay. My understanding is that it usually does not show up in a child this young. Has anybody else had it show up this young? WHat about just finding out that he is blind? Anyone else have it show up just in the eyes first? We have an appoinment at an NF clinic 1-29 which seems like forever. No planned MRI yet assuming they will do that at next appointment. Any advice? Thanks Jens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 No, I don't have any advise for you. But I have lots of prayers for you. Keep searching for your answers. This is good - the search for the truth so you can work with it. My NF2 didn't affect me until I was 17 years old - double vision. I have not heard about it with one so young as your son. Jane Re: lots of ???? Okay we just heard from out doctor who sent my sons eye pictures to a doctor in Houston and he too feels like my 20 week old has NF2. I guess my husband and I are hoping they are wrong. Okay he does have combined retinal-RPE hamartoma with a cateract. He is getting hearing cheeked on Monday but I think it is okay. My understanding is that it usually does not show up in a child this young. Has anybody else had it show up this young? WHat about just finding out that he is blind? Anyone else have it show up just in the eyes first? We have an appoinment at an NF clinic 1-29 which seems like forever. No planned MRI yet assuming they will do that at next appointment. Any advice? Thanks Jens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 Hi Most of us here were born blind in one eye. I guess its not inconceivable for it to affect both eyes. I've got 3 kids,,,,,,,,,,,,, my heart goes out to you and your husband and child. Marcus Re: lots of ???? Okay we just heard from out doctor who sent my sons eye pictures to a doctor in Houston and he too feels like my 20 week old has NF2. I guess my husband and I are hoping they are wrong. Okay he does have combined retinal-RPE hamartoma with a cateract. He is getting hearing cheeked on Monday but I think it is okay. My understanding is that it usually does not show up in a child this young. Has anybody else had it show up this young? WHat about just finding out that he is blind? Anyone else have it show up just in the eyes first? We have an appoinment at an NF clinic 1-29 which seems like forever. No planned MRI yet assuming they will do that at next appointment. Any advice? Thanks Jens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 Crew, Didn't Adam Goodkind have eye complications first? And maybe, umm, Robby in TX? Jens, I haven't seen anyone diagnosed with NF2 at such a young age. The two gentlemen I just mentioned (if I remember correctly) were diagnosed either in their pre- or early teens. I don't know what to say other than the support kind of thing... that I will hold your family in my thoughts and pray for your strength. I think all we can do is try to get the best people we can working with us and make sure that they really know what they are talking about doing and the immediate and long-term options that accompany those actions (and aren't just really good at giving that impression). It sounds like you are on the right track in locating them. Since you know there is something definitely going on with his eyes, learn all you can about that stuff and try not to waste your energy worrying about whether he has NF2 or not right now. You definitely need your energy! All along this path, it hasn't been what I've been faced with, but how I've responded to it that's mattered. (and of course, that I've never been alone...) I read ahead and saw your next message. I see you put your son's needs above yours... and then had an afterthought that you need to address yours also. I admire you for this and I agree with that you really should get checked out thoroughly. University Hospitals are good with this type of thing (when someone is having multiple problems and they need to figure what's going on). As his mother, you will be your son's biggest advocate and source of support. This means that you giving yourself attention to take care of yourself is crucial to his well-being. Sometimes Moms need that permission. I only say it because that's how my Mom explained it to me long ago (she doesn't have NF2 but has had other flare-ups of health problems). I apologize if you already wrote that you are getting things checked out and were just asking us for our opinions of whether we think you have NF2. I don't think any of us are really in the position to say... There are some people with NF2 that have the symptoms you describe, but there are other medical conditions with those symptoms too. The most common signs of NF2 are the eye abnormalities, the tumors on the hearing nerves, then a lot of people have spinal tumors, many have cafe-au-lait patches on their skin. There are many different combos of these things, though. Migraines could be the first sign of tumors... and they could also have no identifiable explanation. How long have you been having them? Have they gotten worse/more frequent lately? (Again, I apologize if I'm not recalling things you've already written about.) Before this gets too long, I just wanted to say that we're all here for you and many of us went through a period of time (in many cases, years) where we had signs of NF2 but were not correctly diagnosed. The important thing is to take care of yourself during that time so that you can have as many options available to you as possible when the future is a little clearer and to make the most of what you have ~now~. Welcome to the Crew and I wish you all the Best. Hugs, kloes wrote: Okay we just heard from out doctor who sent my sons eye pictures to a doctor in Houston and he too feels like my 20 week old has NF2. I guess my husband and I are hoping they are wrong. Okay he does have combined retinal-RPE hamartoma with a cateract. He is getting hearing cheeked on Monday but I think it is okay. My understanding is that it usually does not show up in a child this young. Has anybody else had it show up this young? WHat about just finding out that he is blind? Anyone else have it show up just in the eyes first? We have an appoinment at an NF clinic 1-29 which seems like forever. No planned MRI yet assuming they will do that at next appointment. Any advice?ThanksJens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 Jen, this is so sad to hear of your troubles. I've never heard of someone being born or going blind because of nf2 at such a young age, but this disease never ceases to amaze me. I have an optic tumor on my left eye that is causing me problems but I'm allot older too. Please keep us informed and remember our hearts and prayers are with you. JD in AZ Re: lots of ???? Okay we just heard from out doctor who sent my sons eye pictures to a doctor in Houston and he too feels like my 20 week old has NF2. I guess my husband and I are hoping they are wrong. Okay he does have combined retinal-RPE hamartoma with a cateract. He is getting hearing cheeked on Monday but I think it is okay. My understanding is that it usually does not show up in a child this young. Has anybody else had it show up this young? WHat about just finding out that he is blind? Anyone else have it show up just in the eyes first? We have an appoinment at an NF clinic 1-29 which seems like forever. No planned MRI yet assuming they will do that at next appointment. Any advice? Thanks Jens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 Hi.. I haven't wrote on here for a while but when I do my mail doesn't seem to go on the board..so I hope this one does. I was born blind in one eye and it was when I was about 5 that I had my first operation to remove a tumor on the optic nerve, I had this operation repeated a few times because the tumour kept growing back..around that time (1979-1985) they didn't seem to know about NF....it wasn't till alot of operations later and the lose of my eye that they told me I had NF2 I think that was in about 1988-1989. I have been reading this board alot and it is the first time that I have seen optic tumors mentioned and the fact that other people are getting them too.....Jen it is sad to hear about your little one but judging by the amount of emails on the board I know that we are all thinking about you and your family. (OZ) Re: lots of ???? Okay we just heard from out doctor who sent my sons eye pictures to a doctor in Houston and he too feels like my 20 week old has NF2. I guess my husband and I are hoping they are wrong. Okay he does have combined retinal-RPE hamartoma with a cateract. He is getting hearing cheeked on Monday but I think it is okay. My understanding is that it usually does not show up in a child this young. Has anybody else had it show up this young? WHat about just finding out that he is blind? Anyone else have it show up just in the eyes first? We have an appoinment at an NF clinic 1-29 which seems like forever. No planned MRI yet assuming they will do that at next appointment. Any advice? Thanks Jens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 Hi , I think optic nerve tumors are a lot more common than you realise, my son Shane was born with a lazy eye and very little sight in that eye, he was 20 before nf2 was diagnosed and the tumor on his optic nerve found, plus the 2 an's, and it was only really found then because the nerve was swollen when he went to get new glasses and his optometrist decided to get a specialist to have a look. (Brisbane OZ) I was born blind in one eye and it was when I was about 5 that I had my first operation to remove a tumor on the optic nerve, I have been reading this board alot and it is the first time that I have seen optic tumors mentioned and the fact that other people are getting them too Get your FREE download of MSN Explorer at http://explorer.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 Hi Nice to hear from someone else in Australia.....yes I was born with a lazy eye as well and as the years went on it started to bulge out with the tumor, of course all the Doctors said nothing to worry about, then my mum happen to go to her local GP about a cold she had and as I was only about 5 I was with her, well the GP said "'s eye doesn't look good" and he ordered tests....of course mum now tells me years down the track that she still didn't get any attention for her cold lol lol ahhh things we remember lol lol (Albany WA) Re: lots of ???? Hi , I think optic nerve tumors are a lot more common than you realise, my son Shane was born with a lazy eye and very little sight in that eye, he was 20 before nf2 was diagnosed and the tumor on his optic nerve found, plus the 2 an's, and it was only really found then because the nerve was swollen when he went to get new glasses and his optometrist decided to get a specialist to have a look. (Brisbane OZ) I was born blind in one eye and it was when I was about 5 that I had my first operation to remove a tumor on the optic nerve, I have been reading this board alot and it is the first time that I have seen optic tumors mentioned and the fact that other people are getting them too Get your FREE download of MSN Explorer at http://explorer.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 Hi , Glad to talk to you too even if you are way across the other side of the country. Something i forgot to ask before how is the sight in your other eye, Shanes seems to be getting worse since the AN on the other side was done in March, they haven't decided what to do about the optic one as yet, back to the Doc early next month, but i think it might be a watch it and see thing at the moment, i know they don't want to touch him again for as long as possible, he had a pretty rough time after the AN was done. Chat with friends online, try MSN Messenger: Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 I have lazy eye and my 9 year old has a stigmatism Jens Re: lots of ???? Hi , I think optic nerve tumors are a lot more common than you realise, my son Shane was born with a lazy eye and very little sight in that eye, he was 20 before nf2 was diagnosed and the tumor on his optic nerve found, plus the 2 an's, and it was only really found then because the nerve was swollen when he went to get new glasses and his optometrist decided to get a specialist to have a look. (Brisbane OZ) I was born blind in one eye and it was when I was about 5 that I had my first operation to remove a tumor on the optic nerve, I have been reading this board alot and it is the first time that I have seen optic tumors mentioned and the fact that other people are getting them too Get your FREE download of MSN Explorer at http://explorer.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 Yep Shane does and so does his non NF grandmother May I just ask here if any of you have a stigmatism in your eyes as well as the lasy eye ?? Just curious to know lOIS Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.314 / Virus Database: 175 - Release Date: 1/11/02 Get your FREE download of MSN Explorer at http://explorer.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 My hand is raised Marcus May I just ask here if any of you have a stigmatism in your eyes as well as the lasy eye ?? Just curious to know lOIS Re: lots of ???? Hi , I think optic nerve tumors are a lot more common than you realise, my son Shane was born with a lazy eye and very little sight in that eye, he was 20 before nf2 was diagnosed and the tumor on his optic nerve found, plus the 2 an's, and it was only really found then because the nerve was swollen when he went to get new glasses and his optometrist decided to get a specialist to have a look. (Brisbane OZ) I was born blind in one eye and it was when I was about 5 that I had my first operation to remove a tumor on the optic nerve, I have been reading this board alot and it is the first time that I have seen optic tumors mentioned and the fact that other people are getting them too Get your FREE download of MSN Explorer at http://explorer.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 May I just ask here if any of you have a stigmatism in your eyes as well as the lasy eye ?? Just curious to know lOIS Re: lots of ???? Hi , I think optic nerve tumors are a lot more common than you realise, my son Shane was born with a lazy eye and very little sight in that eye, he was 20 before nf2 was diagnosed and the tumor on his optic nerve found, plus the 2 an's, and it was only really found then because the nerve was swollen when he went to get new glasses and his optometrist decided to get a specialist to have a look. (Brisbane OZ) I was born blind in one eye and it was when I was about 5 that I had my first operation to remove a tumor on the optic nerve, I have been reading this board alot and it is the first time that I have seen optic tumors mentioned and the fact that other people are getting them too Get your FREE download of MSN Explorer at http://explorer.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 May I just ask here if any of you have a stigmatism in your eyes as well as the lasy eye ?? Just curious to know lOIS Re: lots of ???? Hi , I think optic nerve tumors are a lot more common than you realise, my son Shane was born with a lazy eye and very little sight in that eye, he was 20 before nf2 was diagnosed and the tumor on his optic nerve found, plus the 2 an's, and it was only really found then because the nerve was swollen when he went to get new glasses and his optometrist decided to get a specialist to have a look. (Brisbane OZ) I was born blind in one eye and it was when I was about 5 that I had my first operation to remove a tumor on the optic nerve, I have been reading this board alot and it is the first time that I have seen optic tumors mentioned and the fact that other people are getting them too Get your FREE download of MSN Explorer at http://explorer.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 May I just ask here if any of you have a stigmatism in your eyes as well as the lasy eye ?? Just curious to know lOIS Re: lots of ???? Hi , I think optic nerve tumors are a lot more common than you realise, my son Shane was born with a lazy eye and very little sight in that eye, he was 20 before nf2 was diagnosed and the tumor on his optic nerve found, plus the 2 an's, and it was only really found then because the nerve was swollen when he went to get new glasses and his optometrist decided to get a specialist to have a look. (Brisbane OZ) I was born blind in one eye and it was when I was about 5 that I had my first operation to remove a tumor on the optic nerve, I have been reading this board alot and it is the first time that I have seen optic tumors mentioned and the fact that other people are getting them too Get your FREE download of MSN Explorer at http://explorer.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 Yes, I have astigmatism, Marie Re: lots of ???? May I just ask here if any of you have a stigmatism in your eyes as well as the lasy eye ?? Just curious to know lOIS Re: lots of ???? Hi , I think optic nerve tumors are a lot more common than you realise, my son Shane was born with a lazy eye and very little sight in that eye, he was 20 before nf2 was diagnosed and the tumor on his optic nerve found, plus the 2 an's, and it was only really found then because the nerve was swollen when he went to get new glasses and his optometrist decided to get a specialist to have a look. (Brisbane OZ) I was born blind in one eye and it was when I was about 5 that I had my first operation to remove a tumor on the optic nerve, I have been reading this board alot and it is the first time that I have seen optic tumors mentioned and the fact that other people are getting them too Get your FREE download of MSN Explorer at http://explorer.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 Count me in !!! Blessings, ----- Original Message ----- From: Marcus My hand is raised Marcus May I just ask here if any of you have a stigmatism in your eyes as well as the lasy eye ?? Just curious to know lOIS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 My Son Mike cannot focus his eyes like I can they say it is a stigmatism they put up 5 dots he sees 1 or 2 but only with one eye at a time ... he holds shut one eye to read ..id this what you are talking about ?Funny how we have the same things huh ? Lois Re: lots of ???? Hi , I think optic nerve tumors are a lot more common than you realise, my son Shane was born with a lazy eye and very little sight in that eye, he was 20 before nf2 was diagnosed and the tumor on his optic nerve found, plus the 2 an's, and it was only really found then because the nerve was swollen when he went to get new glasses and his optometrist decided to get a specialist to have a look. (Brisbane OZ) I was born blind in one eye and it was when I was about 5 that I had my first operation to remove a tumor on the optic nerve, I have been reading this board alot and it is the first time that I have seen optic tumors mentioned and the fact that other people are getting them too Get your FREE download of MSN Explorer at http://explorer.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 Marie, do you have to hold one eye shut to read ??Mike can read with both but it makes it very difficult.. Lois Re: lots of ???? Hi , I think optic nerve tumors are a lot more common than you realise, my son Shane was born with a lazy eye and very little sight in that eye, he was 20 before nf2 was diagnosed and the tumor on his optic nerve found, plus the 2 an's, and it was only really found then because the nerve was swollen when he went to get new glasses and his optometrist decided to get a specialist to have a look. (Brisbane OZ) I was born blind in one eye and it was when I was about 5 that I had my first operation to remove a tumor on the optic nerve, I have been reading this board alot and it is the first time that I have seen optic tumors mentioned and the fact that other people are getting them too Get your FREE download of MSN Explorer at http://explorer.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 ok Marcus you are recognized go ahead the floor is yours. Lois Re: lots of ???? Hi , I think optic nerve tumors are a lot more common than you realise, my son Shane was born with a lazy eye and very little sight in that eye, he was 20 before nf2 was diagnosed and the tumor on his optic nerve found, plus the 2 an's, and it was only really found then because the nerve was swollen when he went to get new glasses and his optometrist decided to get a specialist to have a look. (Brisbane OZ) I was born blind in one eye and it was when I was about 5 that I had my first operation to remove a tumor on the optic nerve, I have been reading this board alot and it is the first time that I have seen optic tumors mentioned and the fact that other people are getting them too Get your FREE download of MSN Explorer at http://explorer.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 Not always, altho my vision is better if one eye is closed; I also have that condition Jen talked about I think oscillipsis or something, where things seem to move. Marie Re: lots of ???? Marie, do you have to hold one eye shut to read ??Mike can read with both but it makes it very difficult.. Lois Re: lots of ???? Hi , I think optic nerve tumors are a lot more common than you realise, my son Shane was born with a lazy eye and very little sight in that eye, he was 20 before nf2 was diagnosed and the tumor on his optic nerve found, plus the 2 an's, and it was only really found then because the nerve was swollen when he went to get new glasses and his optometrist decided to get a specialist to have a look. (Brisbane OZ) I was born blind in one eye and it was when I was about 5 that I had my first operation to remove a tumor on the optic nerve, I have been reading this board alot and it is the first time that I have seen optic tumors mentioned and the fact that other people are getting them too Get your FREE download of MSN Explorer at http://explorer.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 Ah hmmm ! thankyou Mr Speaker. I just wanted say " Yes count me in " I'll go back to the TEA room now ;-) . ok Marcus you are recognized go ahead the floor is yours. Lois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 Hi My sight in the other eye is okay but does worry me a bit, I have glasses for driving and watching tv and stuff but my eye can still go quite blurry. I have cream to put in every night and in the day as well as I find it can get quite sore, but I don't know whether this might be caused by some medications that I take for my Lupus (SLE) Has Shane gone deaf in the ear that he had the AN in ?. I have gone completely deaf now having had my last AN surgery in 2000. I also had FSR (Fractional Radiation) on my AN's as well which seems to be a new option coming up. Good luck with the Doc next month let me know how it all went. Re: lots of ???? Hi , Glad to talk to you too even if you are way across the other side of the country. Something i forgot to ask before how is the sight in your other eye, Shanes seems to be getting worse since the AN on the other side was done in March, they haven't decided what to do about the optic one as yet, back to the Doc early next month, but i think it might be a watch it and see thing at the moment, i know they don't want to touch him again for as long as possible, he had a pretty rough time after the AN was done. Chat with friends online, try MSN Messenger: Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 Morning Jens....My prayers are with you and your family. The only advice I can give is to take it one day at a time. One minute at a time. That baby will need lots of care, so do take care of yourself too. Hugs, Carol kloes wrote: Okay we just heard from out doctor who sent my sons eye pictures to a doctor in Houston and he too feels like my 20 week old has NF2. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 Lois, I have all three stigmatism, lazy eye and an optic nerve tumor. JD in AZ Quote Link to comment Share on other sites More sharing options...
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