Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 lost his hearing on left side in 1993 and had 3 regrowths of the Left AN....He still had hearing on right side...Pam New Question I'm wondering what percentage of the Crew is deaf, and at what age did this occur? While it appears that surgery has saved a few, exceptional cases of hearing, it appears that overall surgery fails to preserve hearing at a far greater rate than is being reported. The stats I read show 70% hearing preservation. I don't think we have anywhere near that representation.In fairness, this may be a newer statistic, reflective of more recent surgical experiences. Therefore, I pose this question:Of those operated on since 1995, how many of you had hearing preserved in at least one ear? Has the tumor regrown?Barbara F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 No Preservation, it wasn't really attempted in my case. An ABI was attempted but due to the proximity of the tumor to the brainstem it was unable to be placed. Went deaf in 1998 at NYU. Surgeon Golfinos and Noel Cohen Pete -----Original Message-----From: bfrank4fr@... Sent: Saturday, February 22, 2003 10:20 AMTo: NF2_Crew Subject: New QuestionI'm wondering what percentage of the Crew is deaf, and at what age did this occur? While it appears that surgery has saved a few, exceptional cases of hearing, it appears that overall surgery fails to preserve hearing at a far greater rate than is being reported. The stats I read show 70% hearing preservation. I don't think we have anywhere near that representation.In fairness, this may be a newer statistic, reflective of more recent surgical experiences. Therefore, I pose this question:Of those operated on since 1995, how many of you had hearing preserved in at least one ear? Has the tumor regrown?Barbara F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 don't you think that 70% rate applies to ALL acoustic neuromas--including unilateral, which is very different? I would find it hard to believe that 70% of the people with NF2 vestibular schwannomas have their hearing preserved? I was operated on several times since 1995, but without total tumor removal. I did lose my hearing in 2000. Marie New Question I'm wondering what percentage of the Crew is deaf, and at what age did this occur? While it appears that surgery has saved a few, exceptional cases of hearing, it appears that overall surgery fails to preserve hearing at a far greater rate than is being reported. The stats I read show 70% hearing preservation. I don't think we have anywhere near that representation.In fairness, this may be a newer statistic, reflective of more recent surgical experiences. Therefore, I pose this question:Of those operated on since 1995, how many of you had hearing preserved in at least one ear? Has the tumor regrown?Barbara F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 Kristopher had one right side AN removed in 2000 result deafness in that side and then left side done in 2001 now he is totally deaf. bfrank4fr@... wrote: I'm wondering what percentage of the Crew is deaf, and at what age did this occur? While it appears that surgery has saved a few, exceptional cases of hearing, it appears that overall surgery fails to preserve hearing at a far greater rate than is being reported. The stats I read show 70% hearing preservation. I don't think we have anywhere near that representation. In fairness, this may be a newer statistic, reflective of more recent surgical experiences. Therefore, I pose this question: Of those operated on since 1995, how many of you had hearing preserved in at least one ear? Has the tumor regrown? Barbara F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2003 Report Share Posted February 23, 2003 My son, , had a very small AN removed and his hearing preserved. That was in 2000. The tumor has grown back though. The size if the tumor has a lot to do with the success of hearing preservation. Fred Getz > Message: 11 > Date: Sat, 22 Feb 2003 10:20:26 EST > From: bfrank4fr@... > Subject: New Question > > I'm wondering what percentage of the Crew is deaf, and at what age did this > occur? > > While it appears that surgery has saved a few, exceptional cases of hearing, > it appears that overall surgery fails to preserve hearing at a far greater > rate than is being reported. The stats I read show 70% hearing preservation. > I don't think we have anywhere near that representation. > > In fairness, this may be a newer statistic, reflective of more recent > surgical experiences. Therefore, I pose this question: > > Of those operated on since 1995, how many of you had hearing preserved in at > least one ear? > > Has the tumor regrown? > > Barbara F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 Hi Barbara, Deanne : Operated 1996. Deaf in left ear at the time of the first op already. Lost hearing on the right prior to second surgery. Surgery damaged the nerve and it never recovered. Facial nerve damaged during first op already. Tumour had regrown twice where operated at a pace far, far exceeding the "normal" rate. -----Original Message-----From: bfrank4fr@... Sent: 22 February 2003 05:20To: NF2_Crew Subject: New QuestionI'm wondering what percentage of the Crew is deaf, and at what age did this occur? While it appears that surgery has saved a few, exceptional cases of hearing, it appears that overall surgery fails to preserve hearing at a far greater rate than is being reported. The stats I read show 70% hearing preservation. I don't think we have anywhere near that representation.In fairness, this may be a newer statistic, reflective of more recent surgical experiences. Therefore, I pose this question:Of those operated on since 1995, how many of you had hearing preserved in at least one ear? Has the tumor regrown?Barbara F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 Sorry, forgot to mention - 2nd surgery was also in 1996. RE: New Question Hi Barbara, Deanne : Operated 1996. Deaf in left ear at the time of the first op already. Lost hearing on the right prior to second surgery. Surgery damaged the nerve and it never recovered. Facial nerve damaged during first op already. Tumour had regrown twice where operated at a pace far, far exceeding the "normal" rate. -----Original Message-----From: bfrank4fr@... Sent: 22 February 2003 05:20To: NF2_Crew Subject: New QuestionI'm wondering what percentage of the Crew is deaf, and at what age did this occur? While it appears that surgery has saved a few, exceptional cases of hearing, it appears that overall surgery fails to preserve hearing at a far greater rate than is being reported. The stats I read show 70% hearing preservation. I don't think we have anywhere near that representation.In fairness, this may be a newer statistic, reflective of more recent surgical experiences. Therefore, I pose this question:Of those operated on since 1995, how many of you had hearing preserved in at least one ear? Has the tumor regrown?Barbara F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 Barbara, I went temporarily deaf at age 15. Then hearing returned in both ears about a month after. Docs suspected it was from swelling on the spinal surgery I had just had. Then, in 1999, I went deaf in the right ear and had the right AN taken out shortly after and the ABI implanted. THEN, in 2001, I had the left AN taken out while going deaf in the left ear the year before. Neither of the tumors have regrown. -Missy Message: 11 Date: Sat, 22 Feb 2003 10:20:26 EST From: bfrank4fr@... Subject: New Question I'm wondering what percentage of the Crew is deaf, and at what age did this occur? While it appears that surgery has saved a few, exceptional cases of hearing, it appears that overall surgery fails to preserve hearing at a far greater rate than is being reported. The stats I read show 70% hearing preservation. I don't think we have anywhere near that representation. In fairness, this may be a newer statistic, reflective of more recent surgical experiences. Therefore, I pose this question: Of those operated on since 1995, how many of you had hearing preserved in at least one ear? Has the tumor regrown? Barbara F Let us act on what we have since we have not what we wish. -Cardinal Newman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 They'll ask about family history at pre-op, but make sure they know any relevant family history anyhow. I believe there are alternative options with the anaesthesia. There's one type where you are more conscious and aware of what's going on isn't there? a spinal? I am not up on these things. It's true some people choose to live with fibroids and some don't even know they have them. How bad are your symptoms? Have a look at the calender and see if you can work out what time of the month you had your ultrasound and see what type of cysts you have from the ultrasound report. My current GP said that my ovarian cyst was most likely just a usual menstrual cycle cyst and that's why it had gone away by itself...although noone sugested this to me before my operation or in hospital. There are some web sites out there on ovarian cysts. See what the doctor says about your blood tests. They probably have different concerns for patients according to what age groups they fall into. I think there may be a myth or two about fibroids and the menopause (Sophie Bartich's book 'The Other Choice' made mention of that)Some reading or hopefully someone on this forum can explain which things said are true and which aren't. Basically, watch out for misleading assumptions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 They'll ask about family history at pre-op, but make sure they know any relevant family history anyhow. I believe there are alternative options with the anaesthesia. There's one type where you are more conscious and aware of what's going on isn't there? a spinal? I am not up on these things. It's true some people choose to live with fibroids and some don't even know they have them. How bad are your symptoms? Have a look at the calender and see if you can work out what time of the month you had your ultrasound and see what type of cysts you have from the ultrasound report. My current GP said that my ovarian cyst was most likely just a usual menstrual cycle cyst and that's why it had gone away by itself...although noone sugested this to me before my operation or in hospital. There are some web sites out there on ovarian cysts. See what the doctor says about your blood tests. They probably have different concerns for patients according to what age groups they fall into. I think there may be a myth or two about fibroids and the menopause (Sophie Bartich's book 'The Other Choice' made mention of that)Some reading or hopefully someone on this forum can explain which things said are true and which aren't. Basically, watch out for misleading assumptions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 They'll ask about family history at pre-op, but make sure they know any relevant family history anyhow. I believe there are alternative options with the anaesthesia. There's one type where you are more conscious and aware of what's going on isn't there? a spinal? I am not up on these things. It's true some people choose to live with fibroids and some don't even know they have them. How bad are your symptoms? Have a look at the calender and see if you can work out what time of the month you had your ultrasound and see what type of cysts you have from the ultrasound report. My current GP said that my ovarian cyst was most likely just a usual menstrual cycle cyst and that's why it had gone away by itself...although noone sugested this to me before my operation or in hospital. There are some web sites out there on ovarian cysts. See what the doctor says about your blood tests. They probably have different concerns for patients according to what age groups they fall into. I think there may be a myth or two about fibroids and the menopause (Sophie Bartich's book 'The Other Choice' made mention of that)Some reading or hopefully someone on this forum can explain which things said are true and which aren't. Basically, watch out for misleading assumptions. Quote Link to comment Share on other sites More sharing options...
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