Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 Maybe you can give him counsel. Tell him about the Crew. Jane 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...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 Maybe you can give him counsel. Tell him about the Crew. Jane 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...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 I heard about a doctor once before who was actually a neurosurgeon that had NF II and operated on NF II patients. At that tie when I went to Boston Mass. for a research program for people with NF II and how they speech stays the same or deteriorates after deafness (I don't think this happens do you guys?) Anyways, I could not meet her because she herself was the patient in surgery at the time. Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 I heard about a doctor once before who was actually a neurosurgeon that had NF II and operated on NF II patients. At that tie when I went to Boston Mass. for a research program for people with NF II and how they speech stays the same or deteriorates after deafness (I don't think this happens do you guys?) Anyways, I could not meet her because she herself was the patient in surgery at the time. Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 Sally, I think you're referring to Dr. Priscilla Short. She was at Mass. Gen,. but now she's in Chicago, IL. I met her at an ANA Synposium in Boston. She said even as she was speaking her furniture and household goods were on their way to Chicago and she would be joining them there after the synposium. She's a nice lady. K. Re: dr with an AN > I heard about a doctor once before who was actually a neurosurgeon that had > NF II and operated on NF II patients. At that tie when I went to Boston Mass. > for a research program for people with NF II and how they speech stays the > same or deteriorates after deafness (I don't think this happens do you guys?) > > Anyways, I could not meet her because she herself was the patient in surgery > at the time. > > Sally > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 Sally, I think you're referring to Dr. Priscilla Short. She was at Mass. Gen,. but now she's in Chicago, IL. I met her at an ANA Synposium in Boston. She said even as she was speaking her furniture and household goods were on their way to Chicago and she would be joining them there after the synposium. She's a nice lady. K. Re: dr with an AN > I heard about a doctor once before who was actually a neurosurgeon that had > NF II and operated on NF II patients. At that tie when I went to Boston Mass. > for a research program for people with NF II and how they speech stays the > same or deteriorates after deafness (I don't think this happens do you guys?) > > Anyways, I could not meet her because she herself was the patient in surgery > at the time. > > Sally > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 Does doctor Short have her email address available to the Crew? Would anyone have that in their address book? Greg Sally, I think you're referring to Dr. Priscilla Short. She was at Mass. Gen,.but now she's in Chicago, IL. I met her at an ANA Synposium in Boston. Shesaid even as she was speaking her furniture and household goods were ontheir way to Chicago and she would be joining them there after thesynposium. She's a nice lady. K. Re: dr with an AN> I heard about a doctor once before who was actually a neurosurgeon thathad> NF II and operated on NF II patients. At that tie when I went to BostonMass.> for a research program for people with NF II and how they speech stays the> same or deteriorates after deafness (I don't think this happens do youguys?)>> Anyways, I could not meet her because she herself was the patient insurgery> at the time.>> Sally>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 Does doctor Short have her email address available to the Crew? Would anyone have that in their address book? Greg Sally, I think you're referring to Dr. Priscilla Short. She was at Mass. Gen,.but now she's in Chicago, IL. I met her at an ANA Synposium in Boston. Shesaid even as she was speaking her furniture and household goods were ontheir way to Chicago and she would be joining them there after thesynposium. She's a nice lady. K. Re: dr with an AN> I heard about a doctor once before who was actually a neurosurgeon thathad> NF II and operated on NF II patients. At that tie when I went to BostonMass.> for a research program for people with NF II and how they speech stays the> same or deteriorates after deafness (I don't think this happens do youguys?)>> Anyways, I could not meet her because she herself was the patient insurgery> at the time.>> Sally>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 Does doctor Short have her email address available to the Crew? Would anyone have that in their address book? Greg Sally, I think you're referring to Dr. Priscilla Short. She was at Mass. Gen,.but now she's in Chicago, IL. I met her at an ANA Synposium in Boston. Shesaid even as she was speaking her furniture and household goods were ontheir way to Chicago and she would be joining them there after thesynposium. She's a nice lady. K. Re: dr with an AN> I heard about a doctor once before who was actually a neurosurgeon thathad> NF II and operated on NF II patients. At that tie when I went to BostonMass.> for a research program for people with NF II and how they speech stays the> same or deteriorates after deafness (I don't think this happens do youguys?)>> Anyways, I could not meet her because she herself was the patient insurgery> at the time.>> Sally>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 This has been something I have wondered about. Does everyone with an AN have NF2? If so, then there is a lot of ignorance out there by Drs, or doctors who believe that the ONE AN is all that is going to happen and therefore don't enlighten their patients. I suppose for some, ignorance is bliss. ine 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...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 This has been something I have wondered about. Does everyone with an AN have NF2? If so, then there is a lot of ignorance out there by Drs, or doctors who believe that the ONE AN is all that is going to happen and therefore don't enlighten their patients. I suppose for some, ignorance is bliss. ine 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...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 This has been something I have wondered about. Does everyone with an AN have NF2? If so, then there is a lot of ignorance out there by Drs, or doctors who believe that the ONE AN is all that is going to happen and therefore don't enlighten their patients. I suppose for some, ignorance is bliss. ine 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...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 I used to have it Greg, but the last time I sent something it bounced back; if you get it, I would appreciate having it also. marie Re: dr with an AN Does doctor Short have her email address available to the Crew? Would anyone have that in their address book? Greg Sally, I think you're referring to Dr. Priscilla Short. She was at Mass. Gen,.but now she's in Chicago, IL. I met her at an ANA Synposium in Boston. Shesaid even as she was speaking her furniture and household goods were ontheir way to Chicago and she would be joining them there after thesynposium. She's a nice lady. K. Re: dr with an AN> I heard about a doctor once before who was actually a neurosurgeon thathad> NF II and operated on NF II patients. At that tie when I went to BostonMass.> for a research program for people with NF II and how they speech stays the> same or deteriorates after deafness (I don't think this happens do youguys?)>> Anyways, I could not meet her because she herself was the patient insurgery> at the time.>> Sally>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 I used to have it Greg, but the last time I sent something it bounced back; if you get it, I would appreciate having it also. marie Re: dr with an AN Does doctor Short have her email address available to the Crew? Would anyone have that in their address book? Greg Sally, I think you're referring to Dr. Priscilla Short. She was at Mass. Gen,.but now she's in Chicago, IL. I met her at an ANA Synposium in Boston. Shesaid even as she was speaking her furniture and household goods were ontheir way to Chicago and she would be joining them there after thesynposium. She's a nice lady. K. Re: dr with an AN> I heard about a doctor once before who was actually a neurosurgeon thathad> NF II and operated on NF II patients. At that tie when I went to BostonMass.> for a research program for people with NF II and how they speech stays the> same or deteriorates after deafness (I don't think this happens do youguys?)>> Anyways, I could not meet her because she herself was the patient insurgery> at the time.>> Sally>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 I used to have it Greg, but the last time I sent something it bounced back; if you get it, I would appreciate having it also. marie Re: dr with an AN Does doctor Short have her email address available to the Crew? Would anyone have that in their address book? Greg Sally, I think you're referring to Dr. Priscilla Short. She was at Mass. Gen,.but now she's in Chicago, IL. I met her at an ANA Synposium in Boston. Shesaid even as she was speaking her furniture and household goods were ontheir way to Chicago and she would be joining them there after thesynposium. She's a nice lady. K. Re: dr with an AN> I heard about a doctor once before who was actually a neurosurgeon thathad> NF II and operated on NF II patients. At that tie when I went to BostonMass.> for a research program for people with NF II and how they speech stays the> same or deteriorates after deafness (I don't think this happens do youguys?)>> Anyways, I could not meet her because she herself was the patient insurgery> at the time.>> Sally>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 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 14, 2000 Report Share Posted October 14, 2000 , Are you segmentalising mosaicism here? Where do you get this info, I can't remember if and where I read about segmental Nf2.....I remember where I read about segmental Nf1. How do the experts explain this? Rosemary. on 15/10/00 10:59 AM, Cross at bacross@... wrote: > 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 14, 2000 Report Share Posted October 14, 2000 , Are you segmentalising mosaicism here? Where do you get this info, I can't remember if and where I read about segmental Nf2.....I remember where I read about segmental Nf1. How do the experts explain this? Rosemary. on 15/10/00 10:59 AM, Cross at bacross@... wrote: > 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 14, 2000 Report Share Posted October 14, 2000 , Are you segmentalising mosaicism here? Where do you get this info, I can't remember if and where I read about segmental Nf2.....I remember where I read about segmental Nf1. How do the experts explain this? Rosemary. on 15/10/00 10:59 AM, Cross at bacross@... wrote: > 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 15, 2000 Report Share Posted October 15, 2000 Wow, I would like to hear answers on this too. I believe that while ANs form in non nf people, these tumors are by the nerve, but not associated with it. In NF the tumors are involved with the nerve, often times surrounding it. A Q here, Does anyone know if the nerve sheath (a coating that is over all nerves, helping with information) " myelin " is it the 'mother' the orgin, of our tumors?? Is it involved in the tumors at all?? 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...
Guest guest Posted October 15, 2000 Report Share Posted October 15, 2000 many many people, especially older, have only one AN and no nf2. it is us who are in the minority. bummer huh? ine Stanton wrote: > This has been something I have wondered about. > Does everyone with an AN have NF2? If so, then there is a lot of > ignorance out there by Drs, or doctors who believe that the ONE AN is all > that is going to happen and therefore don't enlighten their patients. I > suppose for some, ignorance is bliss. > > ine > > 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...
Guest guest Posted October 15, 2000 Report Share Posted October 15, 2000 many many people, especially older, have only one AN and no nf2. it is us who are in the minority. bummer huh? ine Stanton wrote: > This has been something I have wondered about. > Does everyone with an AN have NF2? If so, then there is a lot of > ignorance out there by Drs, or doctors who believe that the ONE AN is all > that is going to happen and therefore don't enlighten their patients. I > suppose for some, ignorance is bliss. > > ine > > 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...
Guest guest Posted October 15, 2000 Report Share Posted October 15, 2000 many many people, especially older, have only one AN and no nf2. it is us who are in the minority. bummer huh? ine Stanton wrote: > This has been something I have wondered about. > Does everyone with an AN have NF2? If so, then there is a lot of > ignorance out there by Drs, or doctors who believe that the ONE AN is all > that is going to happen and therefore don't enlighten their patients. I > suppose for some, ignorance is bliss. > > ine > > 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...
Guest guest Posted October 15, 2000 Report Share Posted October 15, 2000 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 15, 2000 Report Share Posted October 15, 2000 iD SAY NO WAY IS A NF2 PERSON ever unilateral, the 2nd one may take lonmger to appear than the 1st. Marie Drew wrote: > 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...
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