Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 , Donna and Fred Getz have two children that have NF2; I think manifested with a tumor on the roof of his mouth at about age 6. I don't think he has ANs; come to think of it tho, he is going for surgery at HEI in October, I think for a tumor on his back; their daughter has her first AN operated on at roughly age 12, and is not getting a decompression ont he other side? Not to darken your day, I agree with what the other members said, but you might want to contact Donna and see their experience/advice. marie Re: NF Clinic/Houston >Vicki, > >Thanks for the reply. Unfortunately, there IS gonna >be a bad guy, most likely. Reagan has the cataracts >that are characteristic of NF2, which, when combined >with the fact that I have it, mean that she pretty >much certainly will. > >She is only 3. The doctors tell us that it probably >won't show up for several more years, BUT, I have >heard of NF2 in those as young as 7. Reagan is VERY >large for her age. Already 3'4 " tall, and looks like >a 5-year old. I don't want to take any unnecessary >chances, but I agree maybe 3 is too young to worry >about annual scans. > >My philosophy in this situation is, " Better safe than >sorry. " The doctors' is, " Relax, we're safe. " >Problem is, I can't!! > > > >--- vjpcook@... wrote: >> , >> I tend to agree with the docs this time. How old is >> Regan? If she has no >> symptoms and all scans have been negative up to now, >> I would surely wait a >> couple of years. I understand how you want to get >> the bad guy before he >> hits, but perhaps there will be no bad guy. I hope >> for your whole family's >> sake that is the case. Good luck. Vicki >> >> >> > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 , Donna and Fred Getz have two children that have NF2; I think manifested with a tumor on the roof of his mouth at about age 6. I don't think he has ANs; come to think of it tho, he is going for surgery at HEI in October, I think for a tumor on his back; their daughter has her first AN operated on at roughly age 12, and is not getting a decompression ont he other side? Not to darken your day, I agree with what the other members said, but you might want to contact Donna and see their experience/advice. marie Re: NF Clinic/Houston >Vicki, > >Thanks for the reply. Unfortunately, there IS gonna >be a bad guy, most likely. Reagan has the cataracts >that are characteristic of NF2, which, when combined >with the fact that I have it, mean that she pretty >much certainly will. > >She is only 3. The doctors tell us that it probably >won't show up for several more years, BUT, I have >heard of NF2 in those as young as 7. Reagan is VERY >large for her age. Already 3'4 " tall, and looks like >a 5-year old. I don't want to take any unnecessary >chances, but I agree maybe 3 is too young to worry >about annual scans. > >My philosophy in this situation is, " Better safe than >sorry. " The doctors' is, " Relax, we're safe. " >Problem is, I can't!! > > > >--- vjpcook@... wrote: >> , >> I tend to agree with the docs this time. How old is >> Regan? If she has no >> symptoms and all scans have been negative up to now, >> I would surely wait a >> couple of years. I understand how you want to get >> the bad guy before he >> hits, but perhaps there will be no bad guy. I hope >> for your whole family's >> sake that is the case. Good luck. Vicki >> >> >> > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 , My heart goes out to you and your family. I truly know how deeply this goes to the core of your emotions. Me too. Especially because you have already walked in the shoes. Let's keep the faith that there will be a treatment sometime very soon. I know your fear and if frequent MRIs makes life easier for your family, then insist on it. Peace of mind is everything. You mentioned Reagan's large size. I recall my son who was large too (no NF). That is tough because society expects more from the child who seems older. I'll bet she is a cutie and fills your life with much pleasure. Enjoy her because that is all we can do. Vicki. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2000 Report Share Posted September 11, 2000 , After two years of postponing my own son's first time MRI (he has terrible headaches) I finally got him in last Friday for an MRI and a doc visit. It turns out he does not have tumors but his headaches are from thickening of the sinus so I need to contact an Alergist. My neuro here said to have an MRI every three years. I feel as you do, to get the Bad Guy right away. So, in the mean time I will be researching genetic tests that can be done (something reliable) if that is not available right now, I will make sure to keep a close eye on my son and any symptoms that he has. It's a toughie becuase he is very active (football, basketball, baseball, rollerblading) and any accident could give me a suspicion if that IS a symptoom in itself or a kid accident. I wish you all the luck and wisdom. Love, Sally << , Donna and Fred Getz have two children that have NF2; I think manifested with a tumor on the roof of his mouth at about age 6. I don't think he has ANs; come to think of it tho, he is going for surgery at HEI in October, I think for a tumor on his back; their daughter has her first AN operated on at roughly age 12, and is not getting a decompression ont he other side? Not to darken your day, I agree with what the other members said, but you might want to contact Donna and see their experience/advice. marie Re: NF Clinic/Houston >Vicki, > >Thanks for the reply. Unfortunately, there IS gonna >be a bad guy, most likely. Reagan has the cataracts >that are characteristic of NF2, which, when combined >with the fact that I have it, mean that she pretty >much certainly will. > >She is only 3. The doctors tell us that it probably >won't show up for several more years, BUT, I have >heard of NF2 in those as young as 7. Reagan is VERY >large for her age. Already 3'4 " tall, and looks like >a 5-year old. I don't want to take any unnecessary >chances, but I agree maybe 3 is too young to worry >about annual scans. > >My philosophy in this situation is, " Better safe than >sorry. " The doctors' is, " Relax, we're safe. " >Problem is, I can't!! > > > >--- vjpcook@... wrote: >> , >> I tend to agree with the docs this time. How old is >> Regan? If she has no >> symptoms and all scans have been negative up to now, >> I would surely wait a >> couple of years. I understand how you want to get >> the bad guy before he >> hits, but perhaps there will be no bad guy. I hope >> for your whole family's >> sake that is the case. Good luck. Vicki >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2000 Report Share Posted September 11, 2000 , After two years of postponing my own son's first time MRI (he has terrible headaches) I finally got him in last Friday for an MRI and a doc visit. It turns out he does not have tumors but his headaches are from thickening of the sinus so I need to contact an Alergist. My neuro here said to have an MRI every three years. I feel as you do, to get the Bad Guy right away. So, in the mean time I will be researching genetic tests that can be done (something reliable) if that is not available right now, I will make sure to keep a close eye on my son and any symptoms that he has. It's a toughie becuase he is very active (football, basketball, baseball, rollerblading) and any accident could give me a suspicion if that IS a symptoom in itself or a kid accident. I wish you all the luck and wisdom. Love, Sally << , Donna and Fred Getz have two children that have NF2; I think manifested with a tumor on the roof of his mouth at about age 6. I don't think he has ANs; come to think of it tho, he is going for surgery at HEI in October, I think for a tumor on his back; their daughter has her first AN operated on at roughly age 12, and is not getting a decompression ont he other side? Not to darken your day, I agree with what the other members said, but you might want to contact Donna and see their experience/advice. marie Re: NF Clinic/Houston >Vicki, > >Thanks for the reply. Unfortunately, there IS gonna >be a bad guy, most likely. Reagan has the cataracts >that are characteristic of NF2, which, when combined >with the fact that I have it, mean that she pretty >much certainly will. > >She is only 3. The doctors tell us that it probably >won't show up for several more years, BUT, I have >heard of NF2 in those as young as 7. Reagan is VERY >large for her age. Already 3'4 " tall, and looks like >a 5-year old. I don't want to take any unnecessary >chances, but I agree maybe 3 is too young to worry >about annual scans. > >My philosophy in this situation is, " Better safe than >sorry. " The doctors' is, " Relax, we're safe. " >Problem is, I can't!! > > > >--- vjpcook@... wrote: >> , >> I tend to agree with the docs this time. How old is >> Regan? If she has no >> symptoms and all scans have been negative up to now, >> I would surely wait a >> couple of years. I understand how you want to get >> the bad guy before he >> hits, but perhaps there will be no bad guy. I hope >> for your whole family's >> sake that is the case. Good luck. Vicki >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2000 Report Share Posted September 11, 2000 In a message dated 09/11/2000 12:53:59 PM Eastern Daylight Time, ncwaldrip@... writes: << she has to be sedated >> Hi all, wrote that his daughter has to be sedated for her MRIs and I was wondering about other people. Myself? I have never been sedated for my MRIs. I had my first one about 15 years ago. And have had one every year since then (spine and head). It takes a long time. It's gotten shorter over the years. I used to need to have CAT scans before that. ( The only shot that they give me is Gadolinium (sp?) about half way through. I started to have claustrophopic reactions in the last couple of years. They switched me to an " open " MRI machine. I had a regular (closed) one for years. It's better. But not MUCH better! June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2000 Report Share Posted September 11, 2000 Hi June... I was very claustrophopic my first MRI. I made my meditation exercises stronger and then found out that if you put a washcloth over your eyes it helps. Even if you open your eyes, you won't see anything and it helps tremendously. I take a Xanax before I go, but with everything, I practically go to sleep. Regards, Carol Boob1188@... wrote: > In a message dated 09/11/2000 12:53:59 PM Eastern Daylight Time, > ncwaldrip@... writes: > > << she has to be sedated >> > > Hi all, wrote that his daughter has to be sedated for her MRIs and I > was wondering about other people. > > Myself? I have never been sedated for my MRIs. I had my first one about 15 > years ago. And have had one every year since then (spine and head). It > takes a long time. It's gotten shorter over the years. I used to need to > have CAT scans before that. ( > > The only shot that they give me is Gadolinium (sp?) about half way through. > > I started to have claustrophopic reactions in the last couple of years. They > switched me to an " open " MRI machine. I had a regular (closed) one for > years. It's better. But not MUCH better! > > June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 , My son went to the NF Clinic in Dallas and had surgery when he was 5. The doctor was great and they were even able to get all the tumor. We were going there for his yearly checkups until I was told about the clinic at MD in Houston. In Dallas they told us that he did not have ANY tumors, that his scans were clear. I decided to try this clinic in Houston and after our initial visit and EXTENSIVE testing they found out he had bilateral AN's and even a couple in his spine. His doctor in Houston said they had a different type of MRI, that it took images from the top of his head towards his toes, and the MRI in Dallas took images like from the front of his face toward the back of his head. I don't know if I have described that good or not! I am not trying to scare you away from the doctors in Dallas, they were real good with Lee and did a WONDERFUL job on his tumor removal, I just thought you would like to know this. Donna H. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 In a message dated 09/12/2000 7:32:36 AM Eastern Daylight Time, donnahut@... writes: << His doctor in Houston said they had a different type of MRI, that it took images from the top of his head towards his toes, and the MRI in Dallas took images like from the front of his face toward the back of his head. >> Hi Donna, I guess this is directed to the whole Crew...I'd like to know if you get this kind of feedback from your doctors regarding MRIs. Why? When I have MRIs, they tell me that they do all different angles (that's why it takes 2 to 3 hours for the head and spine). So, I guess what I really want to find out is if they're might only really be doing partial MRIs. FYI - I have mine done at a local MRI place. But the orders come from Mass General (Dr. MacCollin). thanks for the feedback ) June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 In a message dated 09/12/2000 7:32:36 AM Eastern Daylight Time, donnahut@... writes: << His doctor in Houston said they had a different type of MRI, that it took images from the top of his head towards his toes, and the MRI in Dallas took images like from the front of his face toward the back of his head. >> Hi Donna, I guess this is directed to the whole Crew...I'd like to know if you get this kind of feedback from your doctors regarding MRIs. Why? When I have MRIs, they tell me that they do all different angles (that's why it takes 2 to 3 hours for the head and spine). So, I guess what I really want to find out is if they're might only really be doing partial MRIs. FYI - I have mine done at a local MRI place. But the orders come from Mass General (Dr. MacCollin). thanks for the feedback ) June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 In a message dated 09/12/2000 7:32:36 AM Eastern Daylight Time, donnahut@... writes: << His doctor in Houston said they had a different type of MRI, that it took images from the top of his head towards his toes, and the MRI in Dallas took images like from the front of his face toward the back of his head. >> Hi Donna, I guess this is directed to the whole Crew...I'd like to know if you get this kind of feedback from your doctors regarding MRIs. Why? When I have MRIs, they tell me that they do all different angles (that's why it takes 2 to 3 hours for the head and spine). So, I guess what I really want to find out is if they're might only really be doing partial MRIs. FYI - I have mine done at a local MRI place. But the orders come from Mass General (Dr. MacCollin). thanks for the feedback ) June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 Donna, Thanks for the info. I got a packet from the Texas NF Foundation yesterday (we had filled out a card while at the dr. in Houston, to be put on the mailing list). It said there are now SIX NF clinics in Texas, all with dr's from different fields with experience treating NF (supposedly, haha). They are in Houston, Dallas, San , Austin, and Temple (I know that's only five, but there are 2 in either Dallas or Houston). We want to take Reagan to the best one possible, regardless of location. I am grateful to you for telling me this! It is something we can ask when we call the NF clinic in Dallas. Best wishes for you and your son, --- donnahut@... wrote: > , > > My son went to the NF Clinic in Dallas and had > surgery when he was 5. The > doctor was great and they were even able to get all > the tumor. We were going > there for his yearly checkups until I was told about > the clinic at MD > in Houston. In Dallas they told us that he > did not have ANY tumors, > that his scans were clear. I decided to try this > clinic in Houston and after > our initial visit and EXTENSIVE testing they found > out he had bilateral AN's > and even a couple in his spine. His doctor in > Houston said they had a > different type of MRI, that it took images from the > top of his head towards > his toes, and the MRI in Dallas took images like > from the front of his face > toward the back of his head. I don't know if I have > described that good or > not! > > I am not trying to scare you away from the doctors > in Dallas, they were real > good with Lee and did a WONDERFUL job on his tumor > removal, I just thought > you would like to know this. > > Donna H. > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 Donna, Thanks for the info. I got a packet from the Texas NF Foundation yesterday (we had filled out a card while at the dr. in Houston, to be put on the mailing list). It said there are now SIX NF clinics in Texas, all with dr's from different fields with experience treating NF (supposedly, haha). They are in Houston, Dallas, San , Austin, and Temple (I know that's only five, but there are 2 in either Dallas or Houston). We want to take Reagan to the best one possible, regardless of location. I am grateful to you for telling me this! It is something we can ask when we call the NF clinic in Dallas. Best wishes for you and your son, --- donnahut@... wrote: > , > > My son went to the NF Clinic in Dallas and had > surgery when he was 5. The > doctor was great and they were even able to get all > the tumor. We were going > there for his yearly checkups until I was told about > the clinic at MD > in Houston. In Dallas they told us that he > did not have ANY tumors, > that his scans were clear. I decided to try this > clinic in Houston and after > our initial visit and EXTENSIVE testing they found > out he had bilateral AN's > and even a couple in his spine. His doctor in > Houston said they had a > different type of MRI, that it took images from the > top of his head towards > his toes, and the MRI in Dallas took images like > from the front of his face > toward the back of his head. I don't know if I have > described that good or > not! > > I am not trying to scare you away from the doctors > in Dallas, they were real > good with Lee and did a WONDERFUL job on his tumor > removal, I just thought > you would like to know this. > > Donna H. > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 Donna, Thanks for the info. I got a packet from the Texas NF Foundation yesterday (we had filled out a card while at the dr. in Houston, to be put on the mailing list). It said there are now SIX NF clinics in Texas, all with dr's from different fields with experience treating NF (supposedly, haha). They are in Houston, Dallas, San , Austin, and Temple (I know that's only five, but there are 2 in either Dallas or Houston). We want to take Reagan to the best one possible, regardless of location. I am grateful to you for telling me this! It is something we can ask when we call the NF clinic in Dallas. Best wishes for you and your son, --- donnahut@... wrote: > , > > My son went to the NF Clinic in Dallas and had > surgery when he was 5. The > doctor was great and they were even able to get all > the tumor. We were going > there for his yearly checkups until I was told about > the clinic at MD > in Houston. In Dallas they told us that he > did not have ANY tumors, > that his scans were clear. I decided to try this > clinic in Houston and after > our initial visit and EXTENSIVE testing they found > out he had bilateral AN's > and even a couple in his spine. His doctor in > Houston said they had a > different type of MRI, that it took images from the > top of his head towards > his toes, and the MRI in Dallas took images like > from the front of his face > toward the back of his head. I don't know if I have > described that good or > not! > > I am not trying to scare you away from the doctors > in Dallas, they were real > good with Lee and did a WONDERFUL job on his tumor > removal, I just thought > you would like to know this. > > Donna H. > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 Donna, One more question: do you mind my asking how old your son was when his ANs were found? Thanks, --- donnahut@... wrote: > , > > My son went to the NF Clinic in Dallas and had > surgery when he was 5. The > doctor was great and they were even able to get all > the tumor. We were going > there for his yearly checkups until I was told about > the clinic at MD > in Houston. In Dallas they told us that he > did not have ANY tumors, > that his scans were clear. I decided to try this > clinic in Houston and after > our initial visit and EXTENSIVE testing they found > out he had bilateral AN's > and even a couple in his spine. His doctor in > Houston said they had a > different type of MRI, that it took images from the > top of his head towards > his toes, and the MRI in Dallas took images like > from the front of his face > toward the back of his head. I don't know if I have > described that good or > not! > > I am not trying to scare you away from the doctors > in Dallas, they were real > good with Lee and did a WONDERFUL job on his tumor > removal, I just thought > you would like to know this. > > Donna H. > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 Donna, One more question: do you mind my asking how old your son was when his ANs were found? Thanks, --- donnahut@... wrote: > , > > My son went to the NF Clinic in Dallas and had > surgery when he was 5. The > doctor was great and they were even able to get all > the tumor. We were going > there for his yearly checkups until I was told about > the clinic at MD > in Houston. In Dallas they told us that he > did not have ANY tumors, > that his scans were clear. I decided to try this > clinic in Houston and after > our initial visit and EXTENSIVE testing they found > out he had bilateral AN's > and even a couple in his spine. His doctor in > Houston said they had a > different type of MRI, that it took images from the > top of his head towards > his toes, and the MRI in Dallas took images like > from the front of his face > toward the back of his head. I don't know if I have > described that good or > not! > > I am not trying to scare you away from the doctors > in Dallas, they were real > good with Lee and did a WONDERFUL job on his tumor > removal, I just thought > you would like to know this. > > Donna H. > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 , I have to say if you have to have NF, Texas is sure one of the best states to be in! I think it all had to do with Dr. Riccardi's initial interest, but there is a lot more known about NF in Texas than in Pa.! Marie Re: Re: NF Clinic/Houston >Donna, > >Thanks for the info. I got a packet from the Texas NF >Foundation yesterday (we had filled out a card while >at the dr. in Houston, to be put on the mailing list). > It said there are now SIX NF clinics in Texas, all >with dr's from different fields with experience >treating NF (supposedly, haha). They are in Houston, >Dallas, San , Austin, and Temple (I know that's >only five, but there are 2 in either Dallas or >Houston). > >We want to take Reagan to the best one possible, >regardless of location. I am grateful to you for >telling me this! It is something we can ask when we >call the NF clinic in Dallas. > >Best wishes for you and your son, > > > >--- donnahut@... wrote: >> , >> >> My son went to the NF Clinic in Dallas and had >> surgery when he was 5. The >> doctor was great and they were even able to get all >> the tumor. We were going >> there for his yearly checkups until I was told about >> the clinic at MD >> in Houston. In Dallas they told us that he >> did not have ANY tumors, >> that his scans were clear. I decided to try this >> clinic in Houston and after >> our initial visit and EXTENSIVE testing they found >> out he had bilateral AN's >> and even a couple in his spine. His doctor in >> Houston said they had a >> different type of MRI, that it took images from the >> top of his head towards >> his toes, and the MRI in Dallas took images like >> from the front of his face >> toward the back of his head. I don't know if I have >> described that good or >> not! >> >> I am not trying to scare you away from the doctors >> in Dallas, they were real >> good with Lee and did a WONDERFUL job on his tumor >> removal, I just thought >> you would like to know this. >> >> Donna H. >> >> >> > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 , I have to say if you have to have NF, Texas is sure one of the best states to be in! I think it all had to do with Dr. Riccardi's initial interest, but there is a lot more known about NF in Texas than in Pa.! Marie Re: Re: NF Clinic/Houston >Donna, > >Thanks for the info. I got a packet from the Texas NF >Foundation yesterday (we had filled out a card while >at the dr. in Houston, to be put on the mailing list). > It said there are now SIX NF clinics in Texas, all >with dr's from different fields with experience >treating NF (supposedly, haha). They are in Houston, >Dallas, San , Austin, and Temple (I know that's >only five, but there are 2 in either Dallas or >Houston). > >We want to take Reagan to the best one possible, >regardless of location. I am grateful to you for >telling me this! It is something we can ask when we >call the NF clinic in Dallas. > >Best wishes for you and your son, > > > >--- donnahut@... wrote: >> , >> >> My son went to the NF Clinic in Dallas and had >> surgery when he was 5. The >> doctor was great and they were even able to get all >> the tumor. We were going >> there for his yearly checkups until I was told about >> the clinic at MD >> in Houston. In Dallas they told us that he >> did not have ANY tumors, >> that his scans were clear. I decided to try this >> clinic in Houston and after >> our initial visit and EXTENSIVE testing they found >> out he had bilateral AN's >> and even a couple in his spine. His doctor in >> Houston said they had a >> different type of MRI, that it took images from the >> top of his head towards >> his toes, and the MRI in Dallas took images like >> from the front of his face >> toward the back of his head. I don't know if I have >> described that good or >> not! >> >> I am not trying to scare you away from the doctors >> in Dallas, they were real >> good with Lee and did a WONDERFUL job on his tumor >> removal, I just thought >> you would like to know this. >> >> Donna H. >> >> >> > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 , I have to say if you have to have NF, Texas is sure one of the best states to be in! I think it all had to do with Dr. Riccardi's initial interest, but there is a lot more known about NF in Texas than in Pa.! Marie Re: Re: NF Clinic/Houston >Donna, > >Thanks for the info. I got a packet from the Texas NF >Foundation yesterday (we had filled out a card while >at the dr. in Houston, to be put on the mailing list). > It said there are now SIX NF clinics in Texas, all >with dr's from different fields with experience >treating NF (supposedly, haha). They are in Houston, >Dallas, San , Austin, and Temple (I know that's >only five, but there are 2 in either Dallas or >Houston). > >We want to take Reagan to the best one possible, >regardless of location. I am grateful to you for >telling me this! It is something we can ask when we >call the NF clinic in Dallas. > >Best wishes for you and your son, > > > >--- donnahut@... wrote: >> , >> >> My son went to the NF Clinic in Dallas and had >> surgery when he was 5. The >> doctor was great and they were even able to get all >> the tumor. We were going >> there for his yearly checkups until I was told about >> the clinic at MD >> in Houston. In Dallas they told us that he >> did not have ANY tumors, >> that his scans were clear. I decided to try this >> clinic in Houston and after >> our initial visit and EXTENSIVE testing they found >> out he had bilateral AN's >> and even a couple in his spine. His doctor in >> Houston said they had a >> different type of MRI, that it took images from the >> top of his head towards >> his toes, and the MRI in Dallas took images like >> from the front of his face >> toward the back of his head. I don't know if I have >> described that good or >> not! >> >> I am not trying to scare you away from the doctors >> in Dallas, they were real >> good with Lee and did a WONDERFUL job on his tumor >> removal, I just thought >> you would like to know this. >> >> Donna H. >> >> >> > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 June, I was so SHOCKED when the doctor in Houston told me about Lee's AN's and spinal tumors. I asked his doctor HOW could they have missed these in Dallas. That is why he explained the difference in the MRI machines to me. I have a friend whose husband actually FIXES the machines, so I will talk to him and see how accurate this is. Donna -- In NF2_Crewegroups, Boob1188@a... wrote: > In a message dated 09/12/2000 7:32:36 AM Eastern Daylight Time, > donnahut@a... writes: > > << His doctor in Houston said they had a > different type of MRI, that it took images from the top of his head towards > his toes, and the MRI in Dallas took images like from the front of his face > toward the back of his head. >> > > Hi Donna, > > I guess this is directed to the whole Crew...I'd like to know if you get > this kind of feedback from your doctors regarding MRIs. Why? When I have > MRIs, they tell me that they do all different angles (that's why it takes 2 > to 3 hours for the head and spine). So, I guess what I really want to find > out is if they're might only really be doing partial MRIs. FYI - I have > mine done at a local MRI place. But the orders come from Mass General (Dr. > MacCollin). > > thanks for the feedback ) > > June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 June, I was so SHOCKED when the doctor in Houston told me about Lee's AN's and spinal tumors. I asked his doctor HOW could they have missed these in Dallas. That is why he explained the difference in the MRI machines to me. I have a friend whose husband actually FIXES the machines, so I will talk to him and see how accurate this is. Donna -- In NF2_Crewegroups, Boob1188@a... wrote: > In a message dated 09/12/2000 7:32:36 AM Eastern Daylight Time, > donnahut@a... writes: > > << His doctor in Houston said they had a > different type of MRI, that it took images from the top of his head towards > his toes, and the MRI in Dallas took images like from the front of his face > toward the back of his head. >> > > Hi Donna, > > I guess this is directed to the whole Crew...I'd like to know if you get > this kind of feedback from your doctors regarding MRIs. Why? When I have > MRIs, they tell me that they do all different angles (that's why it takes 2 > to 3 hours for the head and spine). So, I guess what I really want to find > out is if they're might only really be doing partial MRIs. FYI - I have > mine done at a local MRI place. But the orders come from Mass General (Dr. > MacCollin). > > thanks for the feedback ) > > June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 June, I was so SHOCKED when the doctor in Houston told me about Lee's AN's and spinal tumors. I asked his doctor HOW could they have missed these in Dallas. That is why he explained the difference in the MRI machines to me. I have a friend whose husband actually FIXES the machines, so I will talk to him and see how accurate this is. Donna -- In NF2_Crewegroups, Boob1188@a... wrote: > In a message dated 09/12/2000 7:32:36 AM Eastern Daylight Time, > donnahut@a... writes: > > << His doctor in Houston said they had a > different type of MRI, that it took images from the top of his head towards > his toes, and the MRI in Dallas took images like from the front of his face > toward the back of his head. >> > > Hi Donna, > > I guess this is directed to the whole Crew...I'd like to know if you get > this kind of feedback from your doctors regarding MRIs. Why? When I have > MRIs, they tell me that they do all different angles (that's why it takes 2 > to 3 hours for the head and spine). So, I guess what I really want to find > out is if they're might only really be doing partial MRIs. FYI - I have > mine done at a local MRI place. But the orders come from Mass General (Dr. > MacCollin). > > thanks for the feedback ) > > June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 , I don't mind at all! At 5 years old they found the tumor on his right optic nerve in Dallas and then at 10 is when we first discovered his AN's, he is 14 now. Donna > > , > > > > My son went to the NF Clinic in Dallas and had > > surgery when he was 5. The > > doctor was great and they were even able to get all > > the tumor. We were going > > there for his yearly checkups until I was told about > > the clinic at MD > > in Houston. In Dallas they told us that he > > did not have ANY tumors, > > that his scans were clear. I decided to try this > > clinic in Houston and after > > our initial visit and EXTENSIVE testing they found > > out he had bilateral AN's > > and even a couple in his spine. His doctor in > > Houston said they had a > > different type of MRI, that it took images from the > > top of his head towards > > his toes, and the MRI in Dallas took images like > > from the front of his face > > toward the back of his head. I don't know if I have > > described that good or > > not! > > > > I am not trying to scare you away from the doctors > > in Dallas, they were real > > good with Lee and did a WONDERFUL job on his tumor > > removal, I just thought > > you would like to know this. > > > > Donna H. > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 , I don't mind at all! At 5 years old they found the tumor on his right optic nerve in Dallas and then at 10 is when we first discovered his AN's, he is 14 now. Donna > > , > > > > My son went to the NF Clinic in Dallas and had > > surgery when he was 5. The > > doctor was great and they were even able to get all > > the tumor. We were going > > there for his yearly checkups until I was told about > > the clinic at MD > > in Houston. In Dallas they told us that he > > did not have ANY tumors, > > that his scans were clear. I decided to try this > > clinic in Houston and after > > our initial visit and EXTENSIVE testing they found > > out he had bilateral AN's > > and even a couple in his spine. His doctor in > > Houston said they had a > > different type of MRI, that it took images from the > > top of his head towards > > his toes, and the MRI in Dallas took images like > > from the front of his face > > toward the back of his head. I don't know if I have > > described that good or > > not! > > > > I am not trying to scare you away from the doctors > > in Dallas, they were real > > good with Lee and did a WONDERFUL job on his tumor > > removal, I just thought > > you would like to know this. > > > > Donna H. > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 , I don't mind at all! At 5 years old they found the tumor on his right optic nerve in Dallas and then at 10 is when we first discovered his AN's, he is 14 now. Donna > > , > > > > My son went to the NF Clinic in Dallas and had > > surgery when he was 5. The > > doctor was great and they were even able to get all > > the tumor. We were going > > there for his yearly checkups until I was told about > > the clinic at MD > > in Houston. In Dallas they told us that he > > did not have ANY tumors, > > that his scans were clear. I decided to try this > > clinic in Houston and after > > our initial visit and EXTENSIVE testing they found > > out he had bilateral AN's > > and even a couple in his spine. His doctor in > > Houston said they had a > > different type of MRI, that it took images from the > > top of his head towards > > his toes, and the MRI in Dallas took images like > > from the front of his face > > toward the back of his head. I don't know if I have > > described that good or > > not! > > > > I am not trying to scare you away from the doctors > > in Dallas, they were real > > good with Lee and did a WONDERFUL job on his tumor > > removal, I just thought > > you would like to know this. > > > > Donna H. > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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