Guest guest Posted October 15, 2000 Report Share Posted October 15, 2000 , You must have been quite an " eye-opener " for this Dr. Regrets for him because he has NF2 and because his knowledge of this disorder was limited until you came along. Experience continues to be the best teacher, doesn't it? Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2000 Report Share Posted October 15, 2000 , You must have been quite an " eye-opener " for this Dr. Regrets for him because he has NF2 and because his knowledge of this disorder was limited until you came along. Experience continues to be the best teacher, doesn't it? Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2000 Report Share Posted October 15, 2000 , You must have been quite an " eye-opener " for this Dr. Regrets for him because he has NF2 and because his knowledge of this disorder was limited until you came along. Experience continues to be the best teacher, doesn't it? Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 Excellent Idea. Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 Excellent Idea. Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 Excellent Idea. Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 If Dr. Short really has NF2, then why don't we invite her to join the crew? I'm sure she could clear up a lot of the medical misinformation that seems to float around on here ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 I think I might have unilateral NF2, I've got 3 tumours on the left side of my head and an AN on my left side. I'm not too sure if an AN will appear on the right side. I have been told that I have the mosaic form of NF2. Because I am the first instance in my family, the mutation happened after my cells started dividing therefore the cells that had divided off before the mutation occured don't have the fault. I think it's only recently (the last couple of years) that they have discovered this form of NF2. > > > Do you know of people with unilateral NF2? I know people with segmental, > > but off the top of my head I cannot say I know anyone with unilateral. I > > wonder if you do, how recent this is? The reason I say that is I was > > diagnosed with unilateral in 1975. It was not until 15 years later I was > > disanosed with Nf2. and bi-laterals. > > So is someone TRULY unilateral, or has the " other one " just not started to > > manifest yet?? > > Marie > > Re: dr with an AN > > > > >Marie, > > >What you say is true -- but it can also be wrong. > > >OK - now I have to explain myself -- Even more rare than NF2 is unilateral > > >NF2 and even more rare than that segmental unilateral NF2.... EG; > > Unilateral > > >NF2 tumours will only grow on one side of the brain and spinal cord. > > >Segmental bilateral NF2 is where tumours will grow in the head only, or the > > >spinal column only. > > >Segmental unilateral is where tumours will grow on one side of the brain > > and > > >nowhere else in the body, and the same for the spine. There would most > > >likely be other outward signs like, " Cafe spots " or the NF2 cataracts or a > > >few surface tumours -- but then again not necessary. > > >From the man who likes to confuse, > > >. > > > Re: dr with an AN > > > > > > > > >> Total difference between a unilateral (one side) AN and NF2. A > > unilateral > > >> AN is just that-one acoustic, NOT heriditary, not NF2. Also it is a lot > > >> more common than NF2. Marie > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 I think I might have unilateral NF2, I've got 3 tumours on the left side of my head and an AN on my left side. I'm not too sure if an AN will appear on the right side. I have been told that I have the mosaic form of NF2. Because I am the first instance in my family, the mutation happened after my cells started dividing therefore the cells that had divided off before the mutation occured don't have the fault. I think it's only recently (the last couple of years) that they have discovered this form of NF2. > > > Do you know of people with unilateral NF2? I know people with segmental, > > but off the top of my head I cannot say I know anyone with unilateral. I > > wonder if you do, how recent this is? The reason I say that is I was > > diagnosed with unilateral in 1975. It was not until 15 years later I was > > disanosed with Nf2. and bi-laterals. > > So is someone TRULY unilateral, or has the " other one " just not started to > > manifest yet?? > > Marie > > Re: dr with an AN > > > > >Marie, > > >What you say is true -- but it can also be wrong. > > >OK - now I have to explain myself -- Even more rare than NF2 is unilateral > > >NF2 and even more rare than that segmental unilateral NF2.... EG; > > Unilateral > > >NF2 tumours will only grow on one side of the brain and spinal cord. > > >Segmental bilateral NF2 is where tumours will grow in the head only, or the > > >spinal column only. > > >Segmental unilateral is where tumours will grow on one side of the brain > > and > > >nowhere else in the body, and the same for the spine. There would most > > >likely be other outward signs like, " Cafe spots " or the NF2 cataracts or a > > >few surface tumours -- but then again not necessary. > > >From the man who likes to confuse, > > >. > > > Re: dr with an AN > > > > > > > > >> Total difference between a unilateral (one side) AN and NF2. A > > unilateral > > >> AN is just that-one acoustic, NOT heriditary, not NF2. Also it is a lot > > >> more common than NF2. Marie > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 I think I might have unilateral NF2, I've got 3 tumours on the left side of my head and an AN on my left side. I'm not too sure if an AN will appear on the right side. I have been told that I have the mosaic form of NF2. Because I am the first instance in my family, the mutation happened after my cells started dividing therefore the cells that had divided off before the mutation occured don't have the fault. I think it's only recently (the last couple of years) that they have discovered this form of NF2. > > > Do you know of people with unilateral NF2? I know people with segmental, > > but off the top of my head I cannot say I know anyone with unilateral. I > > wonder if you do, how recent this is? The reason I say that is I was > > diagnosed with unilateral in 1975. It was not until 15 years later I was > > disanosed with Nf2. and bi-laterals. > > So is someone TRULY unilateral, or has the " other one " just not started to > > manifest yet?? > > Marie > > Re: dr with an AN > > > > >Marie, > > >What you say is true -- but it can also be wrong. > > >OK - now I have to explain myself -- Even more rare than NF2 is unilateral > > >NF2 and even more rare than that segmental unilateral NF2.... EG; > > Unilateral > > >NF2 tumours will only grow on one side of the brain and spinal cord. > > >Segmental bilateral NF2 is where tumours will grow in the head only, or the > > >spinal column only. > > >Segmental unilateral is where tumours will grow on one side of the brain > > and > > >nowhere else in the body, and the same for the spine. There would most > > >likely be other outward signs like, " Cafe spots " or the NF2 cataracts or a > > >few surface tumours -- but then again not necessary. > > >From the man who likes to confuse, > > >. > > > Re: dr with an AN > > > > > > > > >> Total difference between a unilateral (one side) AN and NF2. A > > unilateral > > >> AN is just that-one acoustic, NOT heriditary, not NF2. Also it is a lot > > >> more common than NF2. Marie > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 , It will be very difficult at this time to say that you have unilateral NF2 even though it looks like a strong possibility. BUT --- in our lifetime we should be able to find out --- that's if you haven't got one foot in the grave because your 99 years of age and have just had a massive heart attack. ~[|)))))) The reason being --- the natural history program --- This is where they will be able to take from a patient data base and be able to take actual tumour locations and will be able to match them with a NF2 gene DNA location -- ultimate aim -- diagnostic evaluation. By having this they will be able to take a sample of blood and be able to tell AN patients if there is any likelihood of NF2 --- with NF2 patients they will be able to say --- you will only have bilateral VSs -- only spinals and nowhere else -- just unilateral tumours -- as well as there locations ect. It is going to take time but it will happen. , the tumours that you have maybe the only ones you will ever have -- and until they can get the diagnostic thingy sorted out, you will never know and you will have to keep having MRIs. Wouldn't it be great if you could be told that those were the only tumours that you are going to ever have!!!!!!!!! . Re: dr with an AN > I think I might have unilateral NF2, I've got 3 tumours on the left > side of my head and an AN on my left side. I'm not too sure if an AN > will appear on the right side. I have been told that I have the > mosaic form of NF2. Because I am the first instance in my family, > the mutation happened after my cells started dividing therefore the > cells that had divided off before the mutation occured don't have the > fault. I think it's only recently (the last couple of years) that > they have discovered this form of NF2. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 , It will be very difficult at this time to say that you have unilateral NF2 even though it looks like a strong possibility. BUT --- in our lifetime we should be able to find out --- that's if you haven't got one foot in the grave because your 99 years of age and have just had a massive heart attack. ~[|)))))) The reason being --- the natural history program --- This is where they will be able to take from a patient data base and be able to take actual tumour locations and will be able to match them with a NF2 gene DNA location -- ultimate aim -- diagnostic evaluation. By having this they will be able to take a sample of blood and be able to tell AN patients if there is any likelihood of NF2 --- with NF2 patients they will be able to say --- you will only have bilateral VSs -- only spinals and nowhere else -- just unilateral tumours -- as well as there locations ect. It is going to take time but it will happen. , the tumours that you have maybe the only ones you will ever have -- and until they can get the diagnostic thingy sorted out, you will never know and you will have to keep having MRIs. Wouldn't it be great if you could be told that those were the only tumours that you are going to ever have!!!!!!!!! . Re: dr with an AN > I think I might have unilateral NF2, I've got 3 tumours on the left > side of my head and an AN on my left side. I'm not too sure if an AN > will appear on the right side. I have been told that I have the > mosaic form of NF2. Because I am the first instance in my family, > the mutation happened after my cells started dividing therefore the > cells that had divided off before the mutation occured don't have the > fault. I think it's only recently (the last couple of years) that > they have discovered this form of NF2. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 , It will be very difficult at this time to say that you have unilateral NF2 even though it looks like a strong possibility. BUT --- in our lifetime we should be able to find out --- that's if you haven't got one foot in the grave because your 99 years of age and have just had a massive heart attack. ~[|)))))) The reason being --- the natural history program --- This is where they will be able to take from a patient data base and be able to take actual tumour locations and will be able to match them with a NF2 gene DNA location -- ultimate aim -- diagnostic evaluation. By having this they will be able to take a sample of blood and be able to tell AN patients if there is any likelihood of NF2 --- with NF2 patients they will be able to say --- you will only have bilateral VSs -- only spinals and nowhere else -- just unilateral tumours -- as well as there locations ect. It is going to take time but it will happen. , the tumours that you have maybe the only ones you will ever have -- and until they can get the diagnostic thingy sorted out, you will never know and you will have to keep having MRIs. Wouldn't it be great if you could be told that those were the only tumours that you are going to ever have!!!!!!!!! . Re: dr with an AN > I think I might have unilateral NF2, I've got 3 tumours on the left > side of my head and an AN on my left side. I'm not too sure if an AN > will appear on the right side. I have been told that I have the > mosaic form of NF2. Because I am the first instance in my family, > the mutation happened after my cells started dividing therefore the > cells that had divided off before the mutation occured don't have the > fault. I think it's only recently (the last couple of years) that > they have discovered this form of NF2. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 wht a great idea. Chartrand wrote: > If Dr. Short really has NF2, then why don't we invite her to join the crew? > I'm sure she could clear up a lot of the medical misinformation that seems > to float around on here ... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 Find out if she would go on Oprah if I write a letter and she is invited ?? I need her permission to do so. Is this God's way of answering our prayers for someone to speak for us??? Another miracle perhaps???? mmmmmmmmm........ Chartrand wrote: > If Dr. Short really has NF2, then why don't we invite her to join the crew? > I'm sure she could clear up a lot of the medical misinformation that seems > to float around on here ... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 Find out if she would go on Oprah if I write a letter and she is invited ?? I need her permission to do so. Is this God's way of answering our prayers for someone to speak for us??? Another miracle perhaps???? mmmmmmmmm........ Chartrand wrote: > If Dr. Short really has NF2, then why don't we invite her to join the crew? > I'm sure she could clear up a lot of the medical misinformation that seems > to float around on here ... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2000 Report Share Posted October 17, 2000 Brilliant idea!!!! Go for it... Rosemary on 17/10/00 1:57 PM, carol winarski at horizons@... wrote: > Find out if she would go on Oprah if I write a letter and she is invited ?? I > need her permission to do so. Is this God's way of answering our prayers for > someone to speak for us??? Another miracle perhaps???? mmmmmmmmm........ > > Chartrand wrote: > >> If Dr. Short really has NF2, then why don't we invite her to join the crew? >> I'm sure she could clear up a lot of the medical misinformation that seems >> to float around on here ... >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2000 Report Share Posted October 17, 2000 Brilliant idea!!!! Go for it... Rosemary on 17/10/00 1:57 PM, carol winarski at horizons@... wrote: > Find out if she would go on Oprah if I write a letter and she is invited ?? I > need her permission to do so. Is this God's way of answering our prayers for > someone to speak for us??? Another miracle perhaps???? mmmmmmmmm........ > > Chartrand wrote: > >> If Dr. Short really has NF2, then why don't we invite her to join the crew? >> I'm sure she could clear up a lot of the medical misinformation that seems >> to float around on here ... >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2000 Report Share Posted October 18, 2000 Total difference between a unilateral One Side AN and NF2 The ANAC in Canada has said a few years back, that the two uni lateral and bilateral AN are also composed differently, unilateral surrounding the nerve, hence easier to retain hearing following surgery to remove and the bilateral or NF2 AN is inside and around(outside) the nerve. Making it more difficult to preserve hearing upon removal of the tumor by surgery. Hope this helps. Sheryn dr with an AN > >> > >> > >> >When I was in hospital for an infection 2 weeks ago, i met witrh a DR, > >> >who specialized in infectuous disease -- he told me he had an acoustic > >> >neuroma the year before, lost hearing in that eqar. when he saw me i > >> >could see the fear in his eyes because he was very young (35 to 40), so > >> >he could have nf2 too. it was just interesting to see someone in that > >> >position with same problem > >> > > >> > > >> > > >> > > >> > >> > >> > >> > >> > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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