Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Hello Marie, It looks like you've already made your decision on which method you're going to choose to excise the tumor. ----Original Message Follows---- Reply-To: NF2_Crewonelist To: " 'CREW' " <nf2_crewonelist> Subject: fyi-radiosurgery Date: Mon, 1 Nov 1999 16:44:28 -0500 This is copies from another board, but I thought it might be of interest; MarieI've been a " lurker " for months - I never post, because by the time I would read the day's information, I would be dizzy and unable to continue. At the moment, that has changed because of the steroid meds I'm taking. I had GK for 3cm. AN in October 1998 in Providence, Rhode Island. I live in Ontario, Canada. The first MRI follow-up in the spring showed no change to the tumour. The steroid medication that I had been on due to continuing dizziness was finally stopped in June. In July, I started having headaches as well as continuing dizziness. radiosurgeon from RI said that my headaches did not sound like they were tumour related, and recommended I see neurologist here. Neurologist did not listen to my concern that this was tumour related - said headaches sounded like migraine, and said they were benign. Last week, a visit to my eye doctor on a totally different matter showed that this is not so. There is pressure in my brain, and my neurosurgeon in Toronto, who is following my case here in Canada, says that it appears that there is pressure on the 4th ventricle, obstructing the free flow of fluid. (another follow-up MRI had recently been done, but I was not to see neurosurgeon until November 19th) He is to consult with RI radiosurgeon in the next couple to days and then advise their collective opinion as to what to do now! Another GK, microsurgery, or shunt. I can't believe this is happening. The tumour still has not changed, but something must have. My hearing deteriorated markedly in the last six months as well - 48% speech descrim to 8%. It sure would help to know if there is anyone out there who has been through this. At the moment, I feel somewhat isolated, and events seem to be totally out of my control. Many of you have been on this list for a long time, and I'm sure have heard of such cases. Please be in touch. All the best, Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 This is copies from another board, but I thought it might be of interest; MarieI've been a " lurker " for months - I never post, because by the time I would read the day's information, I would be dizzy and unable to continue. At the moment, that has changed because of the steroid meds I'm taking. I had GK for 3cm. AN in October 1998 in Providence, Rhode Island. I live in Ontario, Canada. The first MRI follow-up in the spring showed no change to the tumour. The steroid medication that I had been on due to continuing dizziness was finally stopped in June. In July, I started having headaches as well as continuing dizziness. radiosurgeon from RI said that my headaches did not sound like they were tumour related, and recommended I see neurologist here. Neurologist did not listen to my concern that this was tumour related - said headaches sounded like migraine, and said they were benign. Last week, a visit to my eye doctor on a totally different matter showed that this is not so. There is pressure in my brain, and my neurosurgeon in Toronto, who is following my case here in Canada, says that it appears that there is pressure on the 4th ventricle, obstructing the free flow of fluid. (another follow-up MRI had recently been done, but I was not to see neurosurgeon until November 19th) He is to consult with RI radiosurgeon in the next couple to days and then advise their collective opinion as to what to do now! Another GK, microsurgery, or shunt. I can't believe this is happening. The tumour still has not changed, but something must have. My hearing deteriorated markedly in the last six months as well - 48% speech descrim to 8%. It sure would help to know if there is anyone out there who has been through this. At the moment, I feel somewhat isolated, and events seem to be totally out of my control. Many of you have been on this list for a long time, and I'm sure have heard of such cases. Please be in touch. All the best, Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 ----Original Message Follows---- sociation site and it will give you instructions. If you have any problems let me know. Marie It sounds pretty biased, but then again, everything is. Mark -----Original Message----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Well, from your recent post outlining the negatives of radiation therapy, it looks like you're leaning your decision toward microsurgery. Mark ----Original Message Follows---- Reply-To: NF2_Crewonelist To: <NF2_Crewonelist> Subject: Re: fyi-radiosurgery Date: Mon, 1 Nov 1999 20:24:31 -0500 Okay, I give up, what have I decided?? Marie fyi-radiosurgery >Date: Mon, 1 Nov 1999 16:44:28 -0500 > >This is copies from another board, but I thought it might be of interest; >MarieI've been a " lurker " for months - I never post, because by the time I >would read the day's information, I would be dizzy and unable to continue. >At the moment, that has changed because of the steroid meds I'm taking. > >I had GK for 3cm. AN in October 1998 in Providence, Rhode Island. I live in >Ontario, Canada. The first MRI follow-up in the spring showed no change to >the tumour. The steroid medication that I had been on due to continuing >dizziness was finally stopped in June. In July, I started having headaches >as well as continuing dizziness. radiosurgeon from RI said that my headaches >did not sound like they were tumour related, and recommended I see >neurologist here. Neurologist did not listen to my concern that this was >tumour related - said headaches sounded like migraine, and said they were >benign. Last week, a visit to my eye doctor on a totally different matter >showed that this is not so. There is pressure in my brain, and my >neurosurgeon in Toronto, who is following my case here in Canada, says that >it appears that there is pressure on the 4th ventricle, obstructing the free >flow of fluid. (another follow-up MRI had recently been done, but I was not >to see neurosurgeon until November 19th) He is to consult with RI >radiosurgeon in the next couple to days and then advise their collective >opinion as to what to do now! Another GK, microsurgery, or shunt. I can't >believe this is happening. The tumour still has not changed, but something >must have. My hearing deteriorated markedly in the last six months as well - >48% speech descrim to 8%. > >It sure would help to know if there is anyone out there who has been through >this. At the moment, I feel somewhat isolated, and events seem to be totally >out of my control. > >Many of you have been on this list for a long time, and I'm sure have heard >of such cases. Please be in touch. > >All the best, Terri >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html ------------------------------------------------------------------------ See what's happening for NF2Con 2000! http://www.home.earthlink.net/~earldillon/nf2convegas2000.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Marie What are all these other boards that your getting this stuff from. Are they for deaf people in general or NF2 people??? JEFF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Okay, I give up, what have I decided?? Marie fyi-radiosurgery >Date: Mon, 1 Nov 1999 16:44:28 -0500 > >This is copies from another board, but I thought it might be of interest; >MarieI've been a " lurker " for months - I never post, because by the time I >would read the day's information, I would be dizzy and unable to continue. >At the moment, that has changed because of the steroid meds I'm taking. > >I had GK for 3cm. AN in October 1998 in Providence, Rhode Island. I live in >Ontario, Canada. The first MRI follow-up in the spring showed no change to >the tumour. The steroid medication that I had been on due to continuing >dizziness was finally stopped in June. In July, I started having headaches >as well as continuing dizziness. radiosurgeon from RI said that my headaches >did not sound like they were tumour related, and recommended I see >neurologist here. Neurologist did not listen to my concern that this was >tumour related - said headaches sounded like migraine, and said they were >benign. Last week, a visit to my eye doctor on a totally different matter >showed that this is not so. There is pressure in my brain, and my >neurosurgeon in Toronto, who is following my case here in Canada, says that >it appears that there is pressure on the 4th ventricle, obstructing the free >flow of fluid. (another follow-up MRI had recently been done, but I was not >to see neurosurgeon until November 19th) He is to consult with RI >radiosurgeon in the next couple to days and then advise their collective >opinion as to what to do now! Another GK, microsurgery, or shunt. I can't >believe this is happening. The tumour still has not changed, but something >must have. My hearing deteriorated markedly in the last six months as well - >48% speech descrim to 8%. > >It sure would help to know if there is anyone out there who has been through >this. At the moment, I feel somewhat isolated, and events seem to be totally >out of my control. > >Many of you have been on this list for a long time, and I'm sure have heard >of such cases. Please be in touch. > >All the best, Terri >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 It is the AN (Acoustic Neuroma) board; I was an active member of ANA for ten years before I realized I had NF2. Anyone can subscribe. Check out the Acoustic Neuroma Association site and it will give you instructions. If you have any problems or are interested, let me know. Marie Re: fyi-radiosurgery >From: WURSJEFF@... (Jeff Wurst) > >Marie >What are all these other boards that your getting this stuff from. Are >they for deaf people in general or NF2 people??? > >JEFF >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html Quote Link to comment Share on other sites More sharing options...
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