Guest guest Posted January 30, 2003 Report Share Posted January 30, 2003 Barbara, did you hear from me, as I have had a decompression. I would say it might buy him time. Marie Adam Update This afternoon he has a little bit more hearing. He went to school and is exhausted from such a concerted effort at lip reading.We are looking into decompression. HEI has done about 40 on NF2ers (where are you guys?). One NF2 patient has had his hearing for 20 years since the decom. However, Dr. Brackmann said it could also be that he has a very slow growing tumor.I hate him having another surgery, but it's less "invasive" than the full-blown tumor removal. It's the first part of a middle fossa, and takes a couple hours.Would love to get more educated on this topic.Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2003 Report Share Posted January 30, 2003 Barbara, did you hear from me, as I have had a decompression. I would say it might buy him time. Marie Adam Update This afternoon he has a little bit more hearing. He went to school and is exhausted from such a concerted effort at lip reading.We are looking into decompression. HEI has done about 40 on NF2ers (where are you guys?). One NF2 patient has had his hearing for 20 years since the decom. However, Dr. Brackmann said it could also be that he has a very slow growing tumor.I hate him having another surgery, but it's less "invasive" than the full-blown tumor removal. It's the first part of a middle fossa, and takes a couple hours.Would love to get more educated on this topic.Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2003 Report Share Posted January 30, 2003 Dear Barbara, I am just wondering if you asked Dr. Brackmann how many of the 40 individuals with NF2 that had decompressions at House were teenagers or kids, and how things were after follow-up for them? That is interesting he chose a single exceptional outcome to highlight, rather than discussing the range of experiences people have had with the procedure. Or did he do the latter? Did or Getz have a decompression at one point? I know Donna and Fred are tied up with Fred's surgery right now, but maybe someone remembers. It does seem like there should be more info about decompression from Crew sources. I am interested in experiences, too, so please share publicly. Our collective understanding and breadth of experiences are our greatest strengths! I remember how tiring those days were for me, too, Barbara. I am sending strength-filled thoughts to Adam. He has many gifts to share with the world and I believe he will have opportunities to do so! Thank you for being there for him. If you need any support from a Mom's perspective, let me know and I will pass along my Mom's phone number (or she can call you). Is Adam a senior in high school now? I am sorry for asking, as I feel I should know. These kids grow up so fast, though! Love, Hugs, and Positive Energy, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2003 Report Share Posted January 30, 2003 Dear Barbara, I am just wondering if you asked Dr. Brackmann how many of the 40 individuals with NF2 that had decompressions at House were teenagers or kids, and how things were after follow-up for them? That is interesting he chose a single exceptional outcome to highlight, rather than discussing the range of experiences people have had with the procedure. Or did he do the latter? Did or Getz have a decompression at one point? I know Donna and Fred are tied up with Fred's surgery right now, but maybe someone remembers. It does seem like there should be more info about decompression from Crew sources. I am interested in experiences, too, so please share publicly. Our collective understanding and breadth of experiences are our greatest strengths! I remember how tiring those days were for me, too, Barbara. I am sending strength-filled thoughts to Adam. He has many gifts to share with the world and I believe he will have opportunities to do so! Thank you for being there for him. If you need any support from a Mom's perspective, let me know and I will pass along my Mom's phone number (or she can call you). Is Adam a senior in high school now? I am sorry for asking, as I feel I should know. These kids grow up so fast, though! Love, Hugs, and Positive Energy, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2003 Report Share Posted January 30, 2003 Neither not had a decompression. Marie Re: Adam Update > Dear Barbara, I am just wondering if you asked Dr. Brackmann how > many of the 40 individuals with NF2 that had decompressions at House > were teenagers or kids, and how things were after follow-up for them? > That is interesting he chose a single exceptional outcome to > highlight, rather than discussing the range of experiences people > have had with the procedure. Or did he do the latter? > > Did or Getz have a decompression at one point? I > know Donna and Fred are tied up with Fred's surgery right now, but > maybe someone remembers. It does seem like there should be more info > about decompression from Crew sources. I am interested in > experiences, too, so please share publicly. Our collective > understanding and breadth of experiences are our greatest > strengths! > > I remember how tiring those days were for me, too, Barbara. I > am sending strength-filled thoughts to Adam. He has many gifts > to share with the world and I believe he will have opportunities > to do so! Thank you for being there for him. If you need any > support from a Mom's perspective, let me know and I will pass > along my Mom's phone number (or she can call you). Is Adam a > senior in high school now? I am sorry for asking, as I feel > I should know. These kids grow up so fast, though! > > Love, Hugs, and Positive Energy, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 Subject: Adam Update Hi Barbara, A girl from Canada had decompression done at HEI in 1995 or 6 , I thought they may lurking or happen to read your mail. Since you have received no reply from her..... Her hearing improved for an approximate two year period. Following very, very substantial hearing loss after the 2 years, She received the ABI and was the first Canadian to do so. I am sorry but really I have no other info in this respect. Good Luck to you and your son Barbara. She was in her late teens in age at the time. Sheryn ___________ This afternoon he has a little bit more hearing. He went to school and is exhausted from such a concerted effort at lip reading.We are looking into decompression. HEI has done about 40 on NF2ers (where are you guys?). One NF2 patient has had his hearing for 20 years since the decom. However, Dr. Brackmann said it could also be that he has a very slow growing tumor.I hate him having another surgery, but it's less "invasive" than the full-blown tumor removal. It's the first part of a middle fossa, and takes a couple hours.Would love to get more educated on this topic.Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 Hi Barbara, I just want to let you that last year as hearing started to drop and she was put on steriods for a short period. It helped bring her hearing back up though it has started falling again after about 6 months. Parent to parent we are in the same shoes here, only hearing ear and it sucks. Im also in contact with Brackman and decompression isnt an option for us. a is scheduled go to him in July. as an is 3.9 cm. How big is his tumor and have you had a mri recently? I know that you do alot of research and are a very educated mom. My prayers are with you if you ever want to talk just give me a shout. in ny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 Hi Barbara, I just want to let you that last year as hearing started to drop and she was put on steriods for a short period. It helped bring her hearing back up though it has started falling again after about 6 months. Parent to parent we are in the same shoes here, only hearing ear and it sucks. Im also in contact with Brackman and decompression isnt an option for us. a is scheduled go to him in July. as an is 3.9 cm. How big is his tumor and have you had a mri recently? I know that you do alot of research and are a very educated mom. My prayers are with you if you ever want to talk just give me a shout. in ny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 Hi Barbara, I just want to let you that last year as hearing started to drop and she was put on steriods for a short period. It helped bring her hearing back up though it has started falling again after about 6 months. Parent to parent we are in the same shoes here, only hearing ear and it sucks. Im also in contact with Brackman and decompression isnt an option for us. a is scheduled go to him in July. as an is 3.9 cm. How big is his tumor and have you had a mri recently? I know that you do alot of research and are a very educated mom. My prayers are with you if you ever want to talk just give me a shout. in ny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 Was that Suzi?? Her father had NF? Marie Adam Update Hi Barbara, A girl from Canada had decompression done at HEI in 1995 or 6 , I thought they may lurking or happen to read your mail. Since you have received no reply from her..... Her hearing improved for an approximate two year period. Following very, very substantial hearing loss after the 2 years, She received the ABI and was the first Canadian to do so. I am sorry but really I have no other info in this respect. Good Luck to you and your son Barbara. She was in her late teens in age at the time. Sheryn ___________ This afternoon he has a little bit more hearing. He went to school and is exhausted from such a concerted effort at lip reading.We are looking into decompression. HEI has done about 40 on NF2ers (where are you guys?). One NF2 patient has had his hearing for 20 years since the decom. However, Dr. Brackmann said it could also be that he has a very slow growing tumor.I hate him having another surgery, but it's less "invasive" than the full-blown tumor removal. It's the first part of a middle fossa, and takes a couple hours.Would love to get more educated on this topic.Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2003 Report Share Posted February 1, 2003 , I know decompression is not an option, but what about debulking? That would just prolong things, and eventually subject to another hearing, but it is an option for some people. Marie Re: Adam Update Hi Barbara,I just want to let you that last year as hearing started to drop and she was put on steriods for a short period. It helped bring her hearing back up though it has started falling again after about 6 months. Parent to parent we are in the same shoes here, only hearing ear and it sucks. Im also in contact with Brackman and decompression isnt an option for us. a is scheduled go to him in July. as an is 3.9 cm. How big is his tumor and have you had a mri recently? I know that you do alot of research and are a very educated mom. My prayers are with you if you ever want to talk just give me a shout. in ny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2003 Report Share Posted February 3, 2003 Subject: Re: Adam Update Yes, Marie, Thats right, it was Susie. Her father Philip has Nf2 as well, as you said. Sheryn ____________________ Was that Suzi?? Her father had NF? Marie Subject: Adam Update Hi Barbara, A girl from Canada had decompression done at HEI in 1995 or 6 , I thought they may lurking or happen to read your mail. Since you have received no reply from her..... Her hearing improved for an approximate two year period. Following very, very substantial hearing loss after the 2 years, She received the ABI and was the first Canadian to do so. I am sorry but really I have no other info in this respect. Good Luck to you and your son Barbara. She was in her late teens in age at the time. Sheryn ___________ This afternoon he has a little bit more hearing. He went to school and is exhausted from such a concerted effort at lip reading.We are looking into decompression. HEI has done about 40 on NF2ers (where are you guys?). One NF2 patient has had his hearing for 20 years since the decom. However, Dr. Brackmann said it could also be that he has a very slow growing tumor.I hate him having another surgery, but it's less "invasive" than the full-blown tumor removal. It's the first part of a middle fossa, and takes a couple hours.Would love to get more educated on this topic.Barbara Quote Link to comment Share on other sites More sharing options...
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