Re: New Member Steve Bretch

[Guest guest]

Hi Steve, I have a lot in common with you; I was born in 1972; my first AN was in 1975, and I had a regrowth in 1979. I thought that was "end of story" - in 1990 I diagnosed myself with Nf2. However,it seemed under control until about 1996. I also have a possible "facial neuronal" and was very interested to hear your description of this; I was kind of thinking this was no big deal, since I already have facial paralysis. I also have an ABI and like it. Hope you will be a vocal member!! Marie drew/Pgh., Pa.

New Member Steve Bretch

My name is Steve Bretch and I live in Overland Park, Kansas. My birthday is 11-29-45 and my e-mail address is SBretch@.... I am writing large because I have been having a lot of problems with my vision lately. We think I might be scratching my corneas with my fingernail at night because they get dry and they I cause abrasions to my eyes that take a long time to heal. I need to get a handle on this problem so I can see better. In the mean time I just write bigger so I can see it.I had an AN removed in 1977 and the operation went well and I thought the only problem was loss of hearing in that ear. Then in 1982 another AN was discovered and I was diagnosed with NF2. We just watched this tumor and thought it would be removed in 8-10 years but I was able to wait a full 18 years until I got my children raised, traveled a lot, camped and generally enjoyed life. My doctors told me it was getting too big and wanted to take it out but I was able to wait until my youngest daughter graduated and a month later I had a 5+ cm AN removed in a 16 hour operation that also resulted in a small brain stem stroke, cut facial nerve, and many other problems. I also had an Auditory Brainstem Implant inserted at this time, which does work and gives me some useful hearing. The recovery from this surgery was hard. Then in April of 2002 I had a facial nerve neuroma removed. This surgery was devastating and I was in the hospital for 5 weeks and almost died. I lost 35 pounds and spent three months in a wheelchair after I got out. The recuperation form this surgery has been very hard but I am finally starting to get much better and can do some things. I have been thinking about joining the NF2 Crew for a long time but really haven't cared about much of anything for the last three years. My attitude on life is getting better thankfully so I decided to join.I do not like to use chat rooms or instant messaging but do like to get e-mail and answer it as long as I recognize the name or the subject, like NF2, otherwise I just delete it because most of it is just junk. A little more about myself. I am disabled as a chemist. I have been married for 33 years, my wife's name id Fern. I have two daughters, one married, who is an occupational therapist, but no grandchildren yet. The other daughter is a student at Kansas State University. I like to read if possible, work in the yard, travel, used to golf but that is now a thing of the past. Both of my children have had MRI's and have no indication of NF2. The only relative that I know of that had it was my mother's sister. It seems like my mother must have had it but no AN were ever found.I hope this information about myself is sufficient, but if not I would be happy to share any other information with anyone, and help anyone in anyway possible.Thank youSteve Bretch

[Guest guest]

Ha, Ha Caren, I bet you think I REALLY look old for someone 30!! I meant to say I was born in 1942!! Can't fool Caren! Marie

Re: New Member Steve Bretch

I was born in 1972;really Marie??Welcome to the crew Steve -CarenCarson City, NV

[Guest guest]

Marie, You were born in 1972, damn woman, that was the year I graduated from High school and you're old enough to be my mama. I know you act younger than you are but isn't this pushing it a bit. . . . HEH HEH

Mike

Re: New Member Steve Bretch

I was born in 1972;really Marie??Welcome to the crew Steve -CarenCarson City, NV

[Guest guest]

Welcome to the Crew, Steve.

What I've learned, since joining, is to not feel sorry for my husband, who has NF2. He had one AN removed 22 yrs ago, and feel lucky that we had 22 yrs. with no problems. He lost the hearing in the operated ear, tho. Now, he has 2 AN's on his hearing side, one in the cochlear canal, which would cause complete immediate deafness, the other a very small tumor. I've found so many wonderful people on the "Crew" and have realized that we're lucky to have had that 22 years without problems. Now, we're just taking one day at a time, but the gang on the Crew have been wonderful support.

Doloras

[Guest guest]

Steve

Born in '48 we must seem to be old foggies to you.

BEANS

PS I have a daughter born in '75 maybe we can hook you up, she is single with one child.( i thought i'd try)

New Member Steve Bretch

My name is Steve Bretch and I live in Overland Park, Kansas. My birthday is 11-29-45 and my e-mail address is SBretch@.... I am writing large because I have been having a lot of problems with my vision lately. We think I might be scratching my corneas with my fingernail at night because they get dry and they I cause abrasions to my eyes that take a long time to heal. I need to get a handle on this problem so I can see better. In the mean time I just write bigger so I can see it.I had an AN removed in 1977 and the operation went well and I thought the only problem was loss of hearing in that ear. Then in 1982 another AN was discovered and I was diagnosed with NF2. We just watched this tumor and thought it would be removed in 8-10 years but I was able to wait a full 18 years until I got my children raised, traveled a lot, camped and generally enjoyed life. My doctors told me it was getting too big and wanted to take it out but I was able to wait until my youngest daughter graduated and a month later I had a 5+ cm AN removed in a 16 hour operation that also resulted in a small brain stem stroke, cut facial nerve, and many other problems. I also had an Auditory Brainstem Implant inserted at this time, which does work and gives me some useful hearing. The recovery from this surgery was hard. Then in April of 2002 I had a facial nerve neuroma removed. This surgery was devastating and I was in the hospital for 5 weeks and almost died. I lost 35 pounds and spent three months in a wheelchair after I got out. The recuperation form this surgery has been very hard but I am finally starting to get much better and can do some things. I have been thinking about joining the NF2 Crew for a long time but really haven't cared about much of anything for the last three years. My attitude on life is getting better thankfully so I decided to join.I do not like to use chat rooms or instant messaging but do like to get e-mail and answer it as long as I recognize the name or the subject, like NF2, otherwise I just delete it because most of it is just junk. A little more about myself. I am disabled as a chemist. I have been married for 33 years, my wife's name id Fern. I have two daughters, one married, who is an occupational therapist, but no grandchildren yet. The other daughter is a student at Kansas State University. I like to read if possible, work in the yard, travel, used to golf but that is now a thing of the past. Both of my children have had MRI's and have no indication of NF2. The only relative that I know of that had it was my mother's sister. It seems like my mother must have had it but no AN were ever found.I hope this information about myself is sufficient, but if not I would be happy to share any other information with anyone, and help anyone in anyway possible.Thank youSteve Bretch

[Guest guest]

WELCOME STEVE,

YOUR BIO WAS INTERESTING TO READ. SO SORRY YOU LOST SO MUCH AS THE TUMOR GREW BIG.

I UNDERSTAND HOW YOU FELT ABOUT WAITING UNTIL YOUR DAUGHTERS GRADUATED.

I HAVE 5 DAUGHTERS WHEN DAUGHTER #4 MARRIED IN 1990 I WAS DEAF IN ONE EAR AND ALMOST DEAF IN THE OTHER.

IN 1991 WHEN DAUGHTER #5 WAS MARRIED I WAS TOTALLY DEAF .

I THANKED GOD MANY TIMES FOR LETTING ME GET THE GIRLS RAISED BEFORE BECOMING DEAF.

I THINK YOU WILL ENJOY THE FELLOWSHIP OF ALL ON THE CREW

SINCERELY,

CATHERINE

ABI #22

[Guest guest]

Steve,

Welcome to the Crew. I have a 15 year old son with bilateral ANs and 100s

of spinal tumors. Last May's MRIs revealed a " spot " on the 5th nerve. Our

NS took it to the " Tumor Board " , many docs reviewed and they determined it

was not a tumor. They are going to watch it. Prior to these MRIs he had

been experiencing great pain in his jaw. The pain is actually in the area

of the " spot " . They said he has Trigeminal Neuralgia and put him on

Neurontin, which does nothing for his pain. Did you experience pain with the

facial nerve neuroma? Did they see it in the MRI? I would appreciate any

information you can give me.

Thanks.

Rhonda Becvar

Waller, Texas

Message: 5

Date: Mon, 28 Apr 2003 12:17:43 -0700

Subject: New Member Steve Bretch

I had a facial nerve neuroma removed. This surgery was devastating and I

was in the hospital for 5 weeks and almost died.