Guest guest Posted September 25, 2000 Report Share Posted September 25, 2000 Hi Jane I am a newby in the last month or so and I have found these people to be top-notch. Funny, helpful...just all around good guys! I was diagnosed in early 1980s and have 6 month MRIs. I am sure if you have any questions, they will do their best to answer or share. WELCOME!! (I bet you have a nice view!!!) Carol maryland Bobby and Carla wrote: > Written 9/24/2000 > > Hi! My name is Jane . I live in Burlington, Iowa. My apartment is > just 2 blocks from the Mississippi River. > > I have been dealing with brain tumors since I was 17 years old (1969). > My first tumor grew on the right eye nerve causing double vision. > Doctors in Chicago, Illinois removed part of this tumor in February of > 1970. Removed enough to allow me normal vision again. Four years later > the tumor grew back to affect my sight again. In October of 1974 I had > my 2nd brain surgery. No luck. Could not reach the tumor this time going > in the same area as the 1st surgery. After a week of x-rays I was found > to have another tumor in the right side in the back of my head. No ill > effects from this tumor. They only caught it by the x-rays. A week after > my 2nd brain surgery I underwent my 3rd brain surgery which the doctors > entered from the back of my head. When I woke up from the surgery I was > deaf in my right ear and paralyzed on the whole right side of face and > throat and some balance was also taken away. Could not pass the drunk > test from here on out. Over a years time some swallowing did come back > in my throat. The tumor in the back of my head was fully removed. The > tumor in the right side (my original tumor) is still with me. They were > only able to remove part of this one again. The doctors did not know > what was causing my tumor growth. I was dismissed from these Chicago > doctors in 1976. In 1978, more or less, I lost the sight in my right > eye. Damaged cornea. The doctors in Chicago had not informed me to be > lubricating this eye. > > In 1986 my local doctor suggested a MRI to check on my original tumor. I > consented. I went to University of Iowa Hospitals and Clinics in Iowa > City, Iowa, where I remain a patient to this day. In 1986 I was found to > have a tumor growing on my left audio nerve. At this time I was told > eventually I would go deaf. Just leave the tumor grow until it knocks > out my hearing. I didn't really believe that total deafness would > happen. I had annual MRIs. In 1991 my first major decrease in hearing > came. Another in 1993. Finally by 1995 I had to use the hearing aid. > Because in 1996 I was going back so frequently to have the aid adjusting > to my increasing hearing loss the audiologist suspected NF2 and booked > me an appointment with an OTO doctor. After meeting with these OTO > doctors I was informed I had NF2. This was in the summer of 1996. I was > so relieved to finally know the name for my tumor growth. > > At this point the doctors said my left tumor was growing fast. Needed > surgery. Offered me the chance to have an ABI placed also at this time. > I consented. I got a new neurosurgeon who was part of this team for > implants of ABI. I had my 4th brain surgery on November 29th, 1996. It > was a 15-1/2 hour surgery because they found 3 tumors. They were > difficult to remove. There were 2 of one kind and 1 of another. Never > did learn the difference. If I was told I have long forgotten. They also > placed the ABI. When I awoke from this surgery I had no feelings from > the waist down. The anesthesia had stayed in my body from the waste > down. This eventually left. Also I had some facial paralysis on the left > side. Some has come back - enough to eat well. The left tear duct also > remains paralyzed so I just add lubricants to both eyes four times a > day. > > My ABI does not work for me. When I was hooked up in January of 1997 for > testing I had a side effect that made me feel seasick. Could not > function with this side effect. I had only heard the beep (computer) on > one channel. I would have just heard noise anyway. I think that would > have drove me crazier than I am now. > > Where I am today is healthier in a lot of ways. I breathe much better > since my last brain surgery. As my hearing decreased in the 90s my sense > of smell increased. I still have a tremendous sense of smell to this > day. But my allergic reactions to certain things (perfumes, roses, > cleaning agents, animals, etc) are not as severe. > > I am able to work outside the home full time. I still drive. > > I still have annual MRIs. > > If you have any questions feel free to ask. > > Thank you. > > Jane > jdewnf2s@... > > ____________NetZero Free Internet Access and Email_________ > Download Now http://www.netzero.net/download/index.html > Request a CDROM 1- > ___________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2000 Report Share Posted September 25, 2000 Welcome to the crew Jane.... you and Marnie can swap poems. . New Member Jane > Written 9/24/2000 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2000 Report Share Posted September 25, 2000 Well you found us Jane!!!! Welcome aboard!!!!!!!!!!!!!!!! To late Bri.......................we did it long ago!!!!!!!! Jane was the one that gave me a nice hit on the head!!!! She has written some very good poems!!!!!!!!!!!!! At 06:42 AM 9/26/00 +1000, you wrote: >Welcome to the crew Jane.... you and Marnie can swap poems. >. > New Member Jane > > > > Written 9/24/2000 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2000 Report Share Posted September 25, 2000 Well you found us Jane!!!! Welcome aboard!!!!!!!!!!!!!!!! To late Bri.......................we did it long ago!!!!!!!! Jane was the one that gave me a nice hit on the head!!!! She has written some very good poems!!!!!!!!!!!!! At 06:42 AM 9/26/00 +1000, you wrote: >Welcome to the crew Jane.... you and Marnie can swap poems. >. > New Member Jane > > > > Written 9/24/2000 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2000 Report Share Posted September 25, 2000 Well you found us Jane!!!! Welcome aboard!!!!!!!!!!!!!!!! To late Bri.......................we did it long ago!!!!!!!! Jane was the one that gave me a nice hit on the head!!!! She has written some very good poems!!!!!!!!!!!!! At 06:42 AM 9/26/00 +1000, you wrote: >Welcome to the crew Jane.... you and Marnie can swap poems. >. > New Member Jane > > > > Written 9/24/2000 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 Welcome Jane!!!! I don't know if you remember me, but you were one of the first people I talked to online. It was on an NF2 site, don't remember which one, in late '98. I lost your e-mail address when our computer broke down and Well, anyway, I'm glad you've joined the crew. You'll learn a lot but also find lots of support from the people here. Diane Mogan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 Welcome Jane!!!! I don't know if you remember me, but you were one of the first people I talked to online. It was on an NF2 site, don't remember which one, in late '98. I lost your e-mail address when our computer broke down and Well, anyway, I'm glad you've joined the crew. You'll learn a lot but also find lots of support from the people here. Diane Mogan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 Welcome Jane!!!! I don't know if you remember me, but you were one of the first people I talked to online. It was on an NF2 site, don't remember which one, in late '98. I lost your e-mail address when our computer broke down and Well, anyway, I'm glad you've joined the crew. You'll learn a lot but also find lots of support from the people here. Diane Mogan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 She didn't hit hard enough.. I may have to start a poem page. BRI...........an New Member Jane > > > > > > > Written 9/24/2000 > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 Diane - Hey - YES - I do remember you and your son Robbie. How is Robbie doing? It is great you are a member her too. I wrote a new bio for this group. Not as dramatic as the one I sent you when we first met. I left out the drama! Tried to anyway. Jane Re: New Member Jane >Welcome Jane!!!! > > I don't know if you remember me, but you were one of the first people >I talked to online. It was on an NF2 site, don't remember which one, in late >'98. I lost your e-mail address when our computer broke down and Well, >anyway, I'm glad you've joined the crew. You'll learn a lot but also find >lots of support from the people here. > >Diane Mogan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 Diane - Hey - YES - I do remember you and your son Robbie. How is Robbie doing? It is great you are a member her too. I wrote a new bio for this group. Not as dramatic as the one I sent you when we first met. I left out the drama! Tried to anyway. Jane Re: New Member Jane >Welcome Jane!!!! > > I don't know if you remember me, but you were one of the first people >I talked to online. It was on an NF2 site, don't remember which one, in late >'98. I lost your e-mail address when our computer broke down and Well, >anyway, I'm glad you've joined the crew. You'll learn a lot but also find >lots of support from the people here. > >Diane Mogan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 Diane - Hey - YES - I do remember you and your son Robbie. How is Robbie doing? It is great you are a member her too. I wrote a new bio for this group. Not as dramatic as the one I sent you when we first met. I left out the drama! Tried to anyway. Jane Re: New Member Jane >Welcome Jane!!!! > > I don't know if you remember me, but you were one of the first people >I talked to online. It was on an NF2 site, don't remember which one, in late >'98. I lost your e-mail address when our computer broke down and Well, >anyway, I'm glad you've joined the crew. You'll learn a lot but also find >lots of support from the people here. > >Diane Mogan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 Jane, Welcome! What a survivor you are. Glad to have you on board. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 Jane, Welcome! What a survivor you are. Glad to have you on board. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 Jane, Welcome! What a survivor you are. Glad to have you on board. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2000 Report Share Posted October 17, 2000 Hi there, I can't remember how to do it. I'm kind of emotionally drained anyway ( Please take me off the list from October 18th until November 1st. I will be out of town attending the funeral of a dear friend. And then upon my return, I will be house sitting for my dad while he's on a business trip. A good time to recoup! See you guys in November. June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2000 Report Share Posted October 17, 2000 Hi there, I can't remember how to do it. I'm kind of emotionally drained anyway ( Please take me off the list from October 18th until November 1st. I will be out of town attending the funeral of a dear friend. And then upon my return, I will be house sitting for my dad while he's on a business trip. A good time to recoup! See you guys in November. June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2000 Report Share Posted October 17, 2000 Hi there, I can't remember how to do it. I'm kind of emotionally drained anyway ( Please take me off the list from October 18th until November 1st. I will be out of town attending the funeral of a dear friend. And then upon my return, I will be house sitting for my dad while he's on a business trip. A good time to recoup! See you guys in November. June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2000 Report Share Posted October 17, 2000 Take care June ! We'll see you soon Marcus Re: New Member Jane > Hi there, I can't remember how to do it. I'm kind of emotionally drained > anyway ( > > Please take me off the list from October 18th until November 1st. I will be > out of town attending the funeral of a dear friend. And then upon my return, > I will be house sitting for my dad while he's on a business trip. A good > time to recoup! See you guys in November. > > June > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2000 Report Share Posted October 17, 2000 Take care June ! We'll see you soon Marcus Re: New Member Jane > Hi there, I can't remember how to do it. I'm kind of emotionally drained > anyway ( > > Please take me off the list from October 18th until November 1st. I will be > out of town attending the funeral of a dear friend. And then upon my return, > I will be house sitting for my dad while he's on a business trip. A good > time to recoup! See you guys in November. > > June > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2000 Report Share Posted October 17, 2000 Take care June ! We'll see you soon Marcus Re: New Member Jane > Hi there, I can't remember how to do it. I'm kind of emotionally drained > anyway ( > > Please take me off the list from October 18th until November 1st. I will be > out of town attending the funeral of a dear friend. And then upon my return, > I will be house sitting for my dad while he's on a business trip. A good > time to recoup! See you guys in November. > > June > > > > Quote Link to comment Share on other sites More sharing options...
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