Introduction, I'm-------

[Raydean]

it's great to see so many people signing up.  Many names I recognize from the old listserve, but there are also some new names.  I thought it might be useful if I started a threat to where we could introduce ourselves and share where we are at in our AN journey.

So to start off

My name is Raydean, it is my husband that had the AN tumor.  Chet was treated in 1997 under emergency conditions for a 6 cm tumor at the age of 50.  It has been an amazing journey with many lessons learned. Along the way we have dealt with many issues that included facial paralysis, hearing loss and other outcomes.  Both Chet and myself have so much to be thankful for.  At the top of the list would be, we are very grateful to the ANA and Lois White for the information and compassion shown in our time of need. 

We're here on this list to help others.  Just as their were people that walked with us lighting the way with information and compassion  and support till we were strong enough to walk alone, we in turn are willing to walk with others on this journey.

Ok, enough about us  NEXT

Raydean

[jcinma]

Here goes-
Diagnosed with a recurring AN Sept. 2004 Apprx. 3.2cm with brainstem compression. Met with numerous radio/micro surgeons.Had retrosig. surgery with Drs. Barker and Poe at Mass General in Boston on Feb. 9. Discharged Feb. 12 but back in Feb.14 with CSF leak. Lumbar drain done and discharged Feb.18. Will be following up with FSR on what was left to preserve facial nerve. Dry eye and very minor facial weakness (first surgery 8 yrs. ago took the hearing and balance so have already adjusted to that) Feeling pretty good so far- I have an amazing support network in my husband, children, family and friends-I too am very thankful
Jane

[kristin]

well..hi! i'm kristin and i was dx'd dec 28,2004 w/ an 8 mm Left Acoustic Neuroma.  i have no hearing loss, but fell twice thinking i was in an earthquake..and my doctor ordered a MRI. anyway, i'm scheduled for surgery using the middle fossa approach on april 14th at the House Ear Clinic in LA with Dr. Derald Brackmann and Dr. William Hitselberger. i'll let ya know how it goes!!!
kristin

[djhorn73]

Hi I am new here... My name is Julie and I was JUST diagnosed this week with AN. And to be perfectly honest I am TERRIFIED! I don't remember how big they said it was... but I have lost some of my hearing in my right ear and I have a loud ringing in my right ear. A long with some minor headaches. My Mom is a nurse so she is searching for the best doctor to do the surgery... or whatever treatment they feel I need. I am just so shocked right now and pretty shaken up because I know NOTHING about this at all! So it is nice to meet you all... I will try to keep you updated on what i find out and how things are going.

[jelay]

Hello to all--
My name is Judy and I am 60 years old. In Dec. 2003, I was diagnosed with a 1.7 cm right-sided AN.  At the time, my symptoms included slight imbalance and moderate hearing loss.  I  waited for six months when I was scheduled for another MRI.  At that time the tumor showed one cm growth.  After thought and research, I chose Gamma Knife Radiation.  My treatment was July 29, 2004 at Barnes-Jewish Hospital in St. Louis.  The gamma knife team was very proficient and professional.  I did fear the attachment of the head frame, but that was unwarranted since the team had it in its position and attached in what seemed such a short time.

Today, seven months down the road, one MRI and two follow up visits with my Dr., I am satisfied with my decision.  The MRI showed no tumor growth and may show signs of death.(It is too early to get a sound diagnosis of the results of the gamma knife tx.)  In early January, 2005, I was assessed by my Dr. since I was having brief periods of pulling and twitching in the right side of my face.  There were signs of some mild muscle weakness.  Six weeks later, (Feb. 22) another assessment was done with no change in the muscle weakness.  I continue to have the twitching and pulling, however it lasts only about 20 seconds and only occurs pehaps once a day.  Fortunately, the spasms haven't effected my facial appearance.  Hearing loss has increased. Because the right eye is reduced in size due to muscle weakness, I have an appointment with an ophthalmologist soon.  There is no change in my vision.  Another MRI will be scheduled one year after tx. 

I have only listed my symptoms and my experience with my AN.  What I haven't said is how thankful I am today that it is a benign tumor, can be treated, isn't life threatening and I am free of discomfort and pain.  I can easily adapt to these changes in my life.  Thank you for this support group and all the helpful information I have gotten from being a part of it.  Bless all of you.     


   

[marie]

Marie, age 67
By the time  they figured out what was wrong with me, it was a relief  to have a name for it.    Had surgery in 1967, 1987, 1991  --  all on left ear
Then in 2002 on right ear.  The tumor is still in , just removed some the the bone around it.   I can still hear in my right ear.  When hearing is no longer usable, they will remove the tumor and install whatever is current (presently ABI)

Never had a headache, CFS leak, major balance problems.
 
After '67 surgery had 7/12, and temporalis transplant.

I see my opthamologist annually and am having annual MRIs

[cecile k]

Hi everyone: I was diagnosed with 1.5 cm AN Nov 2000 and finally had surgery Nov 2001 for 2 cm AN (Vancouver, Canada). The decision making process took about a year and my husband and I decided to go with a surgeon who had done 500+ AN surgeries. We felt very much at peace once we made a decision . The surgical approach used was the suboccipital, to try and save the 60% remaining hearing on the AN side. I did lose all my hearing on that side, was left with no facial paralysis, and basically had to relearn balance all over again (which kept me in hospital for 13 days). But my greatest challenge by far was the terrible headaches which started three weeks post op. Through physiotherapy, an upper cervical chiropractor, a positive attitude and the belief that I was being carried by God, I am so grateful to where I am today.....it took about two years to be headache free.

Looking back, I am truly thankful for the lessons learned and through the AN journey have found that I have a very supportive and caring family! For those of you who are just diagnosed, I think the best advice I could give is research your options, go with an experienced! doctor, and then you will be at peace with your decision.

Cecile


 

[alwaysanonymous]

i dont want to share my personal information but here's my story:

sometime early in the year 2000 i was diagnosed with a 5cm acoustic neuroma at childrens hospital. at the time i was in the 5th grade(i am 14 now) so i had no idea what this meant. then the doctor told me it was a brain tumor and i would have to have it surgically removed. then i understood. about a month later my dad was diagnosed with a 4cm acoustic neuroma. ours were both left sided and we both lost complete hearing in our left ears after the surgery. we got it done at john's hopkins in baltimore. my dad uses a baha hearing device but i can compensate. he was left with bell's paulsy on his left side of the face and he has to use artificial teears for his eye. fortunately i didnt lose anything drastic but my hearing in that ear. i cant cry in my left eye but that doesn't really matter, it isnt dry. my short term affects were not being able to balance and not being able to swallow. for about 2-3 months after the surgey i had to have a physical therapist and i quickly was able to walk. on the other hand i had to have a ngtube down my nose for about 1-2months. when they were about to make it permanent and give me a stomach tube, i had finally been able to swallow tomato soup and thick liquids like it. i was very lucky. however, the trouble did not end there. i got bacterial meningitis quickly after i was released from the hospital and i had to go back. the doctors inserted a permanent IV into my arm and they sent me home. my mom then had to be my nurse. she took care of the feeding tube and the IV. i missed a few months of school and thankfully everyone was very welcoming and nice to me when i came back. often now i still cough on nuts and rice but nothing sreious. having been through it all just showed me how much i could really handle. i never thought that anything like it could happen to me but it did. i do not regret it at all. alot of times i wear my hair up hoping people see my scar and ask me about it. it makes me very proud. i was lucky too that i was very young when it happened because i healed alot better than my father.
if anyone has any questions, just ask me. or if anyone needs to talk to someone im here because i wish i had known another child who had been through the same thing as me. i felt alone. so thats my story and dont be afraid to ask questions

[Becky]

Dear Always Anonymous,

Thank you so much for sharing your story.  You are very brave and strong.  Your are also very fortunate to have recovered so well after having such a large tumor.  I'm sure your story will bring hope to many people.  You are not alone here, and I have heard stories of other children who have been down a very similar road.  I hope you will be able to connect with them through this forum, through those who know them.  You should be very proud, indeed!  You are a surviver!  And, you have a bright future ahead of you.  After all, what is just a few months to recovery when you have your entire life yet to live! 

Thanks again for sharing your beautiful story! 

Sincerely,
Becky

[Joy]

Anonymous,
You are an absolutely amazing! I hope your Dad gets better.   I got the bacterial Meningitis after  my AN surgery and was in the NICU for two weeks. I was in the hospital almost 2 months.  My story is under the title "Introduction and my story" by Joy. God is watching over you! 

[centimeter]

Hi alwaysanonymous!

  If you are interested in emailing someone about your age who underwent a very large tumor removal, email Jessica at grubefam6@aol.com
  I have cleared this with her Mother.

  C

i dont want to share my personal information but here's my story:

sometime early in the year 2000 i was diagnosed with a 5cm acoustic neuroma at childrens hospital. at the time i was in the 5th grade(i am 14 now) so i had no idea what this meant. then the doctor told me it was a brain tumor and i would have to have it surgically removed. then i understood. about a month later my dad was diagnosed with a 4cm acoustic neuroma. ours were both left sided and we both lost complete hearing in our left ears after the surgery. we got it done at john's hopkins in baltimore. my dad uses a baha hearing device but i can compensate. he was left with bell's paulsy on his left side of the face and he has to use artificial teears for his eye. fortunately i didnt lose anything drastic but my hearing in that ear. i cant cry in my left eye but that doesn't really matter, it isnt dry. my short term affects were not being able to balance and not being able to swallow. for about 2-3 months after the surgey i had to have a physical therapist and i quickly was able to walk. on the other hand i had to have a ngtube down my nose for about 1-2months. when they were about to make it permanent and give me a stomach tube, i had finally been able to swallow tomato soup and thick liquids like it. i was very lucky. however, the trouble did not end there. i got bacterial meningitis quickly after i was released from the hospital and i had to go back. the doctors inserted a permanent IV into my arm and they sent me home. my mom then had to be my nurse. she took care of the feeding tube and the IV. i missed a few months of school and thankfully everyone was very welcoming and nice to me when i came back. often now i still cough on nuts and rice but nothing sreious. having been through it all just showed me how much i could really handle. i never thought that anything like it could happen to me but it did. i do not regret it at all. alot of times i wear my hair up hoping people see my scar and ask me about it. it makes me very proud. i was lucky too that i was very young when it happened because i healed alot better than my father.
if anyone has any questions, just ask me. or if anyone needs to talk to someone im here because i wish i had known another child who had been through the same thing as me. i felt alone. so thats my story and dont be afraid to ask questions

[alwaysanonymous]

thanks for thinking of me. i just sent the person an email

and for everyone who sees this page, dont forget to SHARE YOUR STORY because thats what this was intended for

[Jennifer]

Hi, I'm Jennifer. I'm 17 years old and had translab surgery on Feb 10th to remove a 2.5X3cm AN on my right side. My story starts back in November when I finally got my hearing tested. I had been having hearing problems for over a year and a half, it was just never serious enough to do something about. Finally, it was to the point where I was nearly totally deaf in my right ear. The audiologist thought it was kinda strange to have such profound hearing loss just on the one side. He said there was a very small possibility of a growth on the nerve so he scheduled me for an MRI. Low and behold, an acoustic neuroma! The treatment decision actually wasn't that tough to make. I'm too young and my tumor was too big for radiation and I was already deaf in one ear. That meant the main focus was on the facial nerve. So far, I've had a pretty good recovery. The surgery was 15 hours but there were no complications afterwards . I'm just over 5 weeks post-op and I feel pretty good physically. I haven't had any tinnitus or dizziness and have had only a few balance problems. I did have to have a gold weight installed in my right eyelid to help the eye close further. I do have complete facial paralysis on the right side. I am expected to gain all of that back though because the nerve still responded after surgery. This has all been really tough emotionally/mentally/spiritually. I have missed 5 weeks of my last semester of high school . It's really tough. But I know I'll get through it all and come out a better person. The hardest part is, I might need another surgery sometime this summer. Four days after surgery, my neurosurgeon told us about some residual tumor that showed up on the post-op MRI. I guess it was hiding behind something so they couldn't see it. Whatever it is, it will likely need to come out and this summer is probably the best time. I'm still under my parents insurance and it'll be in the natural break between high school and college. It might delay me in going to college a semester but I think that's better than stopping in the middle of the year. Also, during surgery, I had the implant put in for the BAHA. I have the next step in April so I should be hearing by May! That's the one beacon of hope in all of this. Yes, I might have two brain surgeries in one year, but I could get my hearing back! That's my story! I hope this helps someone in some way.

and to alwaysanonymous: it's great to hear the story of another young person who has dealt with AN! The youngest I'd heard of before you was 27! It's good to know I'm not alone...

[Pembo]

Jennifer I had a 16 hour surgery last summer, yours is the first I've heard of such a long surgery. I too had a lot of work done around the facial nerve. My nerve responded at the end of surgery but I woke up with facial paralysis. Not at almost 10 months my face is moving. I can smile again. I'm nowhere near recovered but getting there.  Have hope for your face. My dr noticed the first movement at my 4 mo check-up, a little flicker at the corner of the mouth. Watch for it.

Good luck to you. I'm 36 and this has been really tough. You are a very strong girl to be going through all this at only 17.

Barb
4cm AN 6/3/04

[msuscottie]

My turn I guess ...

I'm new to the list but had microsurgey for a 3.5cm AN (left sided) last October. It was pressing on the brainstem, but I had no side effects. I actually found the tumor by accident after I cut my head open and had a CT Scan in the emrgency room. I'm 29 years old and from Michigan. My surgery was on October 7, 2004 at Providence Hospital in Southfield with Dr's Pieper and LeRouere. They are great, but I had complications with brain swelling which threatened my life and kept me in the hospital for about a month. I'm still recovering, but am now getting confident enough to push my body a bit more. I've always been very active, into sports and so on, so it's very frustrating being spring and not being able to shoot baskets, or play softball. I guess my life is a bit more important than a softball game though. They were able to remove 75% of my tumor on the first surgery and may need to go in and get the rest if it starts growing again. Yuck. Anyway, I have a full (9 page) account of my ordeal if anyone is interested. Just email me at sryan@villagegreen.com.