Guest guest Posted February 19, 2001 Report Share Posted February 19, 2001 Adam had white spots and markings for awhile but most seem to have disappeared. He also has dark patches, and those swirly whatevers with hair growing out of it. Barbara lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 thats interesting! a 1st I've heard it too, I too have a few small white spots, had since birth. dr's in 1984 (i was 14) said it was a sign of whT i HAD, I WAS NOT EVEN DIAGNOSED WITH NF2, THAT I KNOW OF, TIL 1990! anyhow, the white spots look like a birthmark, just white though. anyone else have? > Bette, > > I have thought about going to digest, too, because things are starting to> get a little rough around here. Think about sticking around and hopefully> everything will get better. I have a seven year old son who has NF2 who w> e think has a spontaneous mutation. He has some white spots on his skin, h> ad surgery to remove a tumor in his cervical spine last October, a meningio> ma in his tentorium, and a retinal hamartoma in his left eye. We just foun> d out yesterday he has a lens opacity in his right eye, too. So that's us> .. Let us know if there is anything about NF2 you want to talk about. This> is a good group. :-) > > > > > > > > Please let me know if this thread is going to continue so I can make a > > decision. > > > Bette > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 ----- Original Message ----- thats interesting! a 1st I've heard it too, I too have a few small white spots, had since birth. dr's in 1984 (i was 14) said it was a sign of whT i HAD, I WAS NOT EVEN DIAGNOSED WITH NF2, THAT I KNOW OF, TIL 1990! anyhow, the white spots look like a birthmark, just white though. anyone else have? ============ I have them, . They aren't white, but just areas (round.. various sizes) on my skin that wont tan. I grew up in So. Cal. on the beach in the days before sun screen was the norm, so I was always conscience about my, what I thought, were just birthmarks. Just a while ago I discovered here on the list that they are some form of " reverse " cafe a lait spots. (Guess they are marks we had at birth, eh?: No doctor ever talked to me about them, and, well, I never asked about them either. Mine are not that noticeable anymore now that sun screen is a daily requirement ritual. Jennette > Bette, > > I have thought about going to digest, too, because things are starting to> get a little rough around here. Think about sticking around and hopefully> everything will get better. I have a seven year old son who has NF2 who w> e think has a spontaneous mutation. He has some white spots on his skin, h> ad surgery to remove a tumor in his cervical spine last October, a meningio> ma in his tentorium, and a retinal hamartoma in his left eye. We just foun> d out yesterday he has a lens opacity in his right eye, too. So that's us> .. Let us know if there is anything about NF2 you want to talk about. This> is a good group. :-) > > > > > > > > Please let me know if this thread is going to continue so I can make a > > decision. > > > Bette > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 --- cinnyd@... wrote: > thats interesting! a 1st I've heard it too, I too > have a few small white spots, > had since birth. dr's in 1984 (i was 14) said it was > a sign of whT i HAD, I WAS > NOT EVEN DIAGNOSED WITH NF2, THAT I KNOW OF, TIL > 1990! anyhow, the white spots > look like a birthmark, just white though. anyone > else have? Reagan (my four-year old) has one on her back that's pretty recent. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 10,000 moles????????? I have about 10,000 moles and about 10 larger brown spots. > > I have been told both are a sign of NF2 > > > > thats interesting! a 1st I've heard it too, I too have a few small white > spots, > had since birth. dr's in 1984 (i was 14) said it was a sign of whT i HAD, I > WAS > NOT EVEN DIAGNOSED WITH NF2, THAT I KNOW OF, TIL 1990! anyhow, the white > spots > look like a birthmark, just white though. anyone else have? > > > > > Bette, > > > > I have thought about going to digest, too, because things are starting > to> get a little rough around here. Think about sticking around and > hopefully> everything will get better. I have a seven year old son who has > NF2 who > w> e think has a spontaneous mutation. He has some white spots on his skin, > h> ad surgery to remove a tumor in his cervical spine last October, a > meningio> ma in his tentorium, and a retinal hamartoma in his left eye. We > just > foun> d out yesterday he has a lens opacity in his right eye, too. So > that's > us> .. Let us know if there is anything about NF2 you want to talk about. > This> is a good group. :-) > > > > > > > > > > > > > > > > Please let me know if this thread is going to continue so I can make a > > > > decision. > > > > > > Bette > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 Hi everyone! Whew! about these spots, are they kind of raised almost blister-looking? I hope not. Neither my husband or I have ever been ruled out as having NF2. We have gone under the assumption that my son is a "spontaneous mutation". Now you've got me nervous. ONe of my daughters has a lot of white bumps on one leg and another has a huge reverse cafe au lait birthmark under her arm. I pray this has nothing to do with NF2. Is an MRI the recommended procedure to determine whether or not someone has NF2 if they have no symptoms? Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 NO, THOSE ARE beige colored, like a light coffee , these are white. I have both but the cafe au laie things didnt appear til 10 yearsago, a few on legs but they r not noticable unless u r too close to me :-) These " white spots " everybody keeps talking about, aren't they cafe' au > laite spots that's common with NF2? > > Mark > > > ----Original Message Follows---- > > Reply-To: NF2_Crew > To: <NF2_Crew > > Subject: Re: white spots > Date: Tue, 19 Jun 2001 10:31:56 -0400 > > > ----- Original Message ----- > > > thats interesting! a 1st I've heard it too, I too have a few small white > spots, > had since birth. dr's in 1984 (i was 14) said it was a sign of whT i HAD, I > WAS > NOT EVEN DIAGNOSED WITH NF2, THAT I KNOW OF, TIL 1990! anyhow, the white > spots > look like a birthmark, just white though. anyone else have? > ============ > I have them, . They aren't white, but just areas (round.. various > sizes) on my skin that wont tan. I grew up in So. Cal. on the beach in the > days before sun screen was the norm, so I was always conscience about my, > what I thought, were just birthmarks. Just a while ago I discovered here > on the list that they are some form of " reverse " cafe a lait spots. (Guess > they are marks we had at birth, eh?: No doctor ever talked to me about > them, and, well, I never asked about them either. Mine are not that > noticeable anymore now that sun screen is a daily requirement ritual. > > Jennette > > > > > Bette, > > > > I have thought about going to digest, too, because things are starting > to> get a little rough around here. Think about sticking around and > hopefully> everything will get better. I have a seven year old son who has > NF2 who > w> e think has a spontaneous mutation. He has some white spots on his skin, > h> ad surgery to remove a tumor in his cervical spine last October, a > meningio> ma in his tentorium, and a retinal hamartoma in his left eye. We > just > foun> d out yesterday he has a lens opacity in his right eye, too. So > that's > us> .. Let us know if there is anything about NF2 you want to talk about. > This> is a good group. :-) > > > > > > > > > > > > > > > > Please let me know if this thread is going to continue so I can make a > > > > decision. > > > > > > Bette > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 thats interesting! a 1st I've heard it too, I too have a few small white spots, had since birth. dr's in 1984 (i was 14) said it was a sign of whT i HAD, I WAS NOT EVEN DIAGNOSED WITH NF2, THAT I KNOW OF, TIL 1990! anyhow, the white spots look like a birthmark, just white though. anyone else have? I have finally gotten an answer after 40 years as to why I have places on my skin that won't tan, no one could ever give me an explanation. Thanks everyone for solving the mystery, it has always been the $64,000 question in my family! Love & Prayers, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 Good gawd :-) Seeeeeeee the crew is packed full of info that even dr's can not tell us. We have proved yet another theory of oddities related to nf2. Thk you for all your replies. and 1 last word on this from me, I have the few white spots that are about a centimeter or more in circumfrence (sp?) but i must have very small 1's too becuz while i tan easily i have never been able to achieve a nice smooth tan, looks matted with white spots, not very attractive. I am a sun screen goddness now anyhow, tans make you look old in my opinion. In a message dated 6/19/01 7:53:12 AM Pacific Daylight Time, > cinnyd@... writes: > > > > > > thats interesting! a 1st I've heard it too, I too have a few small white > > spots, > > had since birth. dr's in 1984 (i was 14) said it was a sign of whT i HAD, I > > WAS > > NOT EVEN DIAGNOSED WITH NF2, THAT I KNOW OF, TIL 1990! anyhow, the white > > spots > > look like a birthmark, just white though. anyone else have? > > > > > > > > I have finally gotten an answer after 40 years as to why > I have places on my skin that won't tan, no one could ever > give me an explanation. Thanks everyone for solving the > mystery, it has always been the $64,000 question in my > family! > > Love & Prayers, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 I have about 10,000 moles and about 10 larger brown spots. I have been told both are a sign of NF2 thats interesting! a 1st I've heard it too, I too have a few small white spots, had since birth. dr's in 1984 (i was 14) said it was a sign of whT i HAD, I WAS NOT EVEN DIAGNOSED WITH NF2, THAT I KNOW OF, TIL 1990! anyhow, the white spots look like a birthmark, just white though. anyone else have? > Bette, > > I have thought about going to digest, too, because things are starting to> get a little rough around here. Think about sticking around and hopefully> everything will get better. I have a seven year old son who has NF2 who w> e think has a spontaneous mutation. He has some white spots on his skin, h> ad surgery to remove a tumor in his cervical spine last October, a meningio> ma in his tentorium, and a retinal hamartoma in his left eye. We just foun> d out yesterday he has a lens opacity in his right eye, too. So that's us> .. Let us know if there is anything about NF2 you want to talk about. This> is a good group. :-) > > > > > > > > Please let me know if this thread is going to continue so I can make a > > decision. > > > Bette > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 These " white spots " everybody keeps talking about, aren't they cafe' au laite spots that's common with NF2? Mark ----Original Message Follows---- Reply-To: NF2_Crew To: <NF2_Crew > Subject: Re: white spots Date: Tue, 19 Jun 2001 10:31:56 -0400 ----- Original Message ----- thats interesting! a 1st I've heard it too, I too have a few small white spots, had since birth. dr's in 1984 (i was 14) said it was a sign of whT i HAD, I WAS NOT EVEN DIAGNOSED WITH NF2, THAT I KNOW OF, TIL 1990! anyhow, the white spots look like a birthmark, just white though. anyone else have? ============ I have them, . They aren't white, but just areas (round.. various sizes) on my skin that wont tan. I grew up in So. Cal. on the beach in the days before sun screen was the norm, so I was always conscience about my, what I thought, were just birthmarks. Just a while ago I discovered here on the list that they are some form of " reverse " cafe a lait spots. (Guess they are marks we had at birth, eh?: No doctor ever talked to me about them, and, well, I never asked about them either. Mine are not that noticeable anymore now that sun screen is a daily requirement ritual. Jennette > Bette, > > I have thought about going to digest, too, because things are starting to> get a little rough around here. Think about sticking around and hopefully> everything will get better. I have a seven year old son who has NF2 who w> e think has a spontaneous mutation. He has some white spots on his skin, h> ad surgery to remove a tumor in his cervical spine last October, a meningio> ma in his tentorium, and a retinal hamartoma in his left eye. We just foun> d out yesterday he has a lens opacity in his right eye, too. So that's us> .. Let us know if there is anything about NF2 you want to talk about. This> is a good group. :-) > > > > > > > > Please let me know if this thread is going to continue so I can make a > > decision. > > > Bette > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 Adam has had them all. He's had cafe au lait, brown "plaques", whirly whatevers with hair that grows out of it. Now, most of the cafe au lait spots are gone, even most of the plaques. Today I brought him to a dermatologist for a growth on his back -- he said it's a regular hemangioma (basically group of blood vessels) that he'll take off in the fall. What was so irritating is clearly this guy has NOT seen NF2, but he proceeds to inform me that he has -- and not so infrequently(that's when you know he's stretching it a bit)-- and that there are four types of NF, and that with NF2 you can have bony deformations, as well as adrenal problems. It's pretty scary when these guys can't admit what they do NOT know, and provide wrong information. Rather than confront him, I just nodded, and ignored him. Barbara lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 the cafe au lait spots are milky brown and NF1. marie Re: white spots >Date: Tue, 19 Jun 2001 10:31:56 -0400 > > >----- Original Message ----- > > >thats interesting! a 1st I've heard it too, I too have a few small white >spots, >had since birth. dr's in 1984 (i was 14) said it was a sign of whT i HAD, I >WAS >NOT EVEN DIAGNOSED WITH NF2, THAT I KNOW OF, TIL 1990! anyhow, the white >spots >look like a birthmark, just white though. anyone else have? >============ >I have them, . They aren't white, but just areas (round.. various >sizes) on my skin that wont tan. I grew up in So. Cal. on the beach in the >days before sun screen was the norm, so I was always conscience about my, >what I thought, were just birthmarks. Just a while ago I discovered here >on the list that they are some form of " reverse " cafe a lait spots. (Guess >they are marks we had at birth, eh?: No doctor ever talked to me about >them, and, well, I never asked about them either. Mine are not that >noticeable anymore now that sun screen is a daily requirement ritual. > >Jennette > > > > > Bette, > > > > I have thought about going to digest, too, because things are starting >to> get a little rough around here. Think about sticking around and >hopefully> everything will get better. I have a seven year old son who has >NF2 who >w> e think has a spontaneous mutation. He has some white spots on his skin, >h> ad surgery to remove a tumor in his cervical spine last October, a >meningio> ma in his tentorium, and a retinal hamartoma in his left eye. We >just >foun> d out yesterday he has a lens opacity in his right eye, too. So >that's >us> .. Let us know if there is anything about NF2 you want to talk about. >This> is a good group. :-) > > > > > > > > > > > > > > > > Please let me know if this thread is going to continue so I can make a > > > > decision. > > > > > > Bette > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 My family all has them and we have NF2. I think it is diffrent with every instans of the desease, the cafe au lait spots are milky brown and NF1. marie Re: white spots >Date: Tue, 19 Jun 2001 10:31:56 -0400 > > >----- Original Message ----- > > >thats interesting! a 1st I've heard it too, I too have a few small white >spots, >had since birth. dr's in 1984 (i was 14) said it was a sign of whT i HAD, I >WAS >NOT EVEN DIAGNOSED WITH NF2, THAT I KNOW OF, TIL 1990! anyhow, the white >spots >look like a birthmark, just white though. anyone else have? >============ >I have them, . They aren't white, but just areas (round.. various >sizes) on my skin that wont tan. I grew up in So. Cal. on the beach in the >days before sun screen was the norm, so I was always conscience about my, >what I thought, were just birthmarks. Just a while ago I discovered here >on the list that they are some form of " reverse " cafe a lait spots. (Guess >they are marks we had at birth, eh?: No doctor ever talked to me about >them, and, well, I never asked about them either. Mine are not that >noticeable anymore now that sun screen is a daily requirement ritual. > >Jennette > > > > > Bette, > > > > I have thought about going to digest, too, because things are starting >to> get a little rough around here. Think about sticking around and >hopefully> everything will get better. I have a seven year old son who has >NF2 who >w> e think has a spontaneous mutation. He has some white spots on his skin, >h> ad surgery to remove a tumor in his cervical spine last October, a >meningio> ma in his tentorium, and a retinal hamartoma in his left eye. We >just >foun> d out yesterday he has a lens opacity in his right eye, too. So >that's >us> .. Let us know if there is anything about NF2 you want to talk about. >This> is a good group. :-) > > > > > > > > > > > > > > > > Please let me know if this thread is going to continue so I can make a > > > > decision. > > > > > > Bette > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 Ha Ha Ha Ha he he he ehehehehhehI love this bit. re: white spots Rather than confront him, I just nodded, and ignored him. Barbara lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 Diane, talk to about a blood test you can take to see if you have NF2. I'd think you and your husband would want to know, at least for your other kids (if you have others) getting tested also. Later, JD in AZ On Tue, 19 Jun 2001 15:43:24 EDT adonai10@... writes: > Hi everyone! > > Whew! about these spots, are they kind of raised almost > blister-looking? I hope not. Neither my husband or I have ever > been ruled > out as having NF2. We have gone under the assumption that my son is > a > " spontaneous mutation " . Now you've got me nervous. ONe of my > daughters has > a lot of white bumps on one leg and another has a huge reverse cafe > au lait > birthmark under her arm. I pray this has nothing to do with NF2. > Is an MRI > the recommended procedure to determine whether or not someone has > NF2 if they > have no symptoms? > > Diane Later, JD in AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 Hi Diane!! I think a simple blood test is your best option. Ive decided to to the boys, so we know. They will draw blood from me, look for the mutatation, then once it is found look for it in the boys. I think??? these blood tests are pretty good, and it may be a good idea to do this for your peace of mind. My sisters want to have this test done on all of them and they are symptom less. Also, I have a white spot, mine looks like a patch of skin that doesnt tan, shaped like a heart (who needs a tat??) I think your daughter is fine and without NF2. Are these spots spreading?? I have a sister whos kids had a skin thing like that and it was called Contagia?? A relative to chicken pox. The virus is encapsolated tho so they wouldnt heal on their own, had to pop them. I hope thats not the case with your daughter, it doesnt hurt but kinda gross:)~~Lowi:) Re: white spots Hi everyone! Whew! about these spots, are they kind of raised almost blister-looking? I hope not. Neither my husband or I have ever been ruled out as having NF2. We have gone under the assumption that my son is a "spontaneous mutation". Now you've got me nervous. ONe of my daughters has a lot of white bumps on one leg and another has a huge reverse cafe au lait birthmark under her arm. I pray this has nothing to do with NF2. Is an MRI the recommended procedure to determine whether or not someone has NF2 if they have no symptoms? Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 I have seen this so many times too Barbara. The old Bluff and Bluster:( It gets pretty obdvious that they have no idea what they are talking about:( A real waste of time and $, Good for you that you ignored him!!~~Lowi:) What was so irritating is clearly this guy has NOT seen NF2, but he proceeds to inform me that he has -- and not so infrequently(that's when you know he's stretching it a bit)-- and that there are four types of NF, and that with NF2 you can have bony deformations, as well as adrenal problems. It's pretty scary when these guys can't admit what they do NOT know, and provide wrong information. Rather than confront him, I just nodded, and ignored him. Barbara lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 Diane wrote: Hi everyone! Whew! about these spots, are they kind of raised almost blister-looking? I hope not. Neither my husband or I have ever been ruled out as having NF2. We have gone under the assumption that my son is a " spontaneous mutation " . Now you've got me nervous. ONe of my daughters has a lot of white bumps on one leg and another has a huge reverse cafe au lait birthmark under her arm. I pray this has nothing to do with NF2. Is an MRI the recommended procedure to determine whether or not someone has NF2 if they have no symptoms? Donna replies: A little tricky here. First of all, let a dermatologist look at those raised white spots and give you an idea what they are. All three of my children have raised white spots. 's and s's have " smoother " edges. 's have more defined edges but still not as defined as what most of us think of as a typical mole. When 's first one appeared it really scared me because she had already had the blood test (and our family's was a defined mutation that they found in , and Fred who all had acoustic neuromas) and was told she did not have NF2. A dermatologist at NIH looked at her and said it was something called a " nevis " (not sure on the spelling). and 's white spots are small tumors. Some of them have grown and become painful and had to be removed, others just sit there quietly. As for a definitive test for NF2 for someone who has no symptoms...probably an MRI is the best one available at the moment, but you have to remember that it can only tell you that they have symptoms now or have no symptoms now. Since we have seen within this group (and I have seen within my family) different ages of onset of symptoms, you would probably have to repeat the MRI at some intervals (2 years? 3 years?) if someone showed no symptoms. Check with the docs on that. In our family, I think had her first AN show up at about 8 and at about 5. I would have to go back and look through the records, but that's what I seem to remember. Another one of those questions to which I'm not sure there's an easy " one size fits all " answer. God bless. ...Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 Lori wrote: Hi Diane!! I think a simple blood test is your best option. Ive decided to to the boys, so we know. They will draw blood from me, look for the mutatation, then once it is found look for it in the boys. I think??? these blood tests are pretty good, and it may be a good idea to do this for your peace of mind... Donna replies: This subject has come up before. At the recent NF Inc meeting at NIH, Dilys Parry talked about the blood tests during her presentation. Her belief was that they aren't accurate enough yet. I believe the accuracy in diagnosing NF2 with the blood tests was around 40% if I recall. The tests are also very expensive. I'll see if I can find the notes on it and post it if I have that info. ....Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 What is the best test then Donna?? I havent had my boys checked yet:( and I feel I should now. I hate to have them do an MRI til there is some sort of symptoms:( I agree with your other post, the kids really need to be let in on this. Its a family disease and everyone in the family is effected whether they actually have it or not.~~Lowi:( Re: White Spots > Lori wrote: > > Hi Diane!! I think a simple blood test is your best option. Ive decided to > to the boys, so we know. They will draw blood from me, look for the > mutatation, then once it is found look for it in the boys. I think??? these > blood tests are pretty good, and it may be a good idea to do this for your > peace of mind... > > Donna replies: > > This subject has come up before. At the recent NF Inc meeting at NIH, Dilys > Parry talked about the blood tests during her presentation. Her belief was > that they aren't accurate enough yet. I believe the accuracy in diagnosing > NF2 with the blood tests was around 40% if I recall. The tests are also very > expensive. I'll see if I can find the notes on it and post it if I have that > info. > > ...Donna > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 Barbara, I don't like to confront either. I did write a letter ,though, to all three retina specialists and both pediatric ophthalmologists who misdiagnosed my son with a subretinal hemorrhage instead of a retinal hamartoma. I think it is scary all the doctors out there misdiagnosing people and not knowing much about NF. I just wanted the doctors to know what my son actually has and that he has NF2. They need to know that in case they ever have a patient with that again so they don't misdiagnose that patient. They need to know what they are looking at. I'm just thankful that Nick's most recent pediatric ophthalmologist realized what he had and referred him for an MRI. :-) I have seen this so many times too Barbara. The old Bluff and Bluster:( It gets pretty obdvious that they have no idea what they are talking about:( A real waste of time and $, Good for you that you ignored him!!~~Lowi:) What was so irritating is clearly this guy has NOT seen NF2, but he proceeds to inform me that he has -- and not so infrequently(that's when you know he's stretching it a bit)-- and that there are four types of NF, and that with NF2 you can have bony deformations, as well as adrenal problems. It's pretty scary when these guys can't admit what they do NOT know, and provide wrong information. Rather than confront him, I just nodded, and ignored him. Barbara lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2001 Report Share Posted June 21, 2001 Lori wrote: What is the best test then Donna?? I havent had my boys checked yet:( and I feel I should now. I hate to have them do an MRI til there is some sort of symptoms:( I agree with your other post, the kids really need to be let in on this. Its a family disease and everyone in the family is effected whether they actually have it or not.~~Lowi:( Donna replies: Lori, First let me just say a big AMEN! NF2 IS a family disease effecting all family members whether they actually have it or not! You have no idea how many times I have made some similar statement to people who learn that 3 of our 5 have it! Oh, then isn't effected? HUH?????? I am tempted to scream " Get a clue!!! " but I know they're just naive. Second, how I wish I could tell you for sure what is the best test! As I see it, here's the situation: If you wait until there are symptoms, it may be too late for safe AN surgery. On the other hand, if you have an MRI and nothing shows up, it really is only proof that there are no ANs there right now and you may need to repeat the MRIs later as I mentioned in another recent post. 's first AN was seen and monitored for at least 3 years before she had surgery at age 10. The surgery was done because at that point an ABR test showed a delay. Her hearing was perfect in the ear when she went into surgery. When she came out it was gone. Hindsight...we would have learned more about specific surgeons and surgical approaches and taken her elsewhere for the surgery-but very likely still have had it at that time. In fairness to the surgeon there were two tumors not just one and the nerve was sandwiched between them. Her facial nerve was saved, and the acoustic nerve looked good but no longer functioned. You might consider starting with ABRs and audiology every six months if you really adamantly don't want to do MRIs, but I suspect there may be someone here on the Crew who will tell us that their ABRs were fine when the tumor(s) was already becoming too involved or large for a " safe and easy " surgery. The reason I suspect that is because we have people here who had tiny tumors that impacted their hearing while others had humongous tumors before any problem was noticed. If it could happen to the auditory function, it seems that it could also happen to the conduction. Crew? ...Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2001 Report Share Posted June 21, 2001 Lori, just my opinion, wudnt a few mri's be a lottt easier? I mean come on, they are maybe 45 minutes each and insurance should pay, and you would get results instantly. these blood test are 40% accurate. I had AN's for at least 5 years with no obvious symptoms. cin Lori Phibbs wrote: > What is the best test then Donna?? I havent had my boys checked yet:( and I > feel I should now. I hate to have them do an MRI til there is some sort of > symptoms:( I agree with your other post, the kids really need to be let in > on this. Its a family disease and everyone in the family is effected > whether they actually have it or not.~~Lowi:( > Re: White Spots > > > Lori wrote: > > > > Hi Diane!! I think a simple blood test is your best option. Ive decided > to > > to the boys, so we know. They will draw blood from me, look for the > > mutatation, then once it is found look for it in the boys. I think??? > these > > blood tests are pretty good, and it may be a good idea to do this for your > > peace of mind... > > > > Donna replies: > > > > This subject has come up before. At the recent NF Inc meeting at NIH, > Dilys > > Parry talked about the blood tests during her presentation. Her belief > was > > that they aren't accurate enough yet. I believe the accuracy in > diagnosing > > NF2 with the blood tests was around 40% if I recall. The tests are also > very > > expensive. I'll see if I can find the notes on it and post it if I have > that > > info. > > > > ...Donna > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2001 Report Share Posted June 22, 2001 Thanks Donna for the reply. I'm going to make a dermatologist appt. for my daughter right away. I think it was Dr...... (Ican't think of his name right now) anyway the Dr. that House Ear sends everyone for a physical to before surgery. I believe it was he that said the best way to rule out NF2 in us (the parents) is to have an MRI. So, I guess I should get moving on that too. Thanks and God Bless. Diane Quote Link to comment Share on other sites More sharing options...
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