Newbie ~ giant AN removed in 1991

[ginsue]

I just stumbles on this forum.  I'm having a follow-up MRI done this afternoon. Crazy headaches lately.  In December of 1991 I was diagnosed with a giant acoustic neuroma.  They never gave me the measurement but said that it was the size of a tennis ball.  I was 29 years old at the time, single with two daughters 7 and 9. Boy I would never want to relive that year but I did learn some very important life lessons that I would never want to give up. Now I'm 50 with deafness in the right ear, facial paralysis and balance issues.  Just recently I have been diagnosed with psoriatic arthritis and fibromyalgia.  This kind of sounds bad but I never let it get me down, I'm glad to be here.

 So I'm here to say "hi"

[Chances3]

Hi Ginsue,

Wow you have been through a lot, but you stay very positive and that's great !  My tumor was small, and my surgeon told me he had removed some the size of a golf ball.  Your tumor is the largest I ever heard about in all the years I have participated in this forum.  My wife has fibromyalgia, I know what you are going through.  Her doctors recommended low impact exercises, especially in a pool.  She hates the water, but the low impact exercises and strengthening does help.  Thank you for sharing, you're a special person.

God Bless.

[ginsue]

Nice to meet you Chances3

Yes the size of my tumor is rare.  I have never heard of any that size either.  Not really what I would like to be known for though.  They say that GOD only gives us what we can handle, I just wish that he didn't have so much confidence in me.

[mikechinnock]

Hi ... I am glad you found the site. Welcome.

[KBL]

Hi, you are the first person I've met with a tumor the same size as mine!  Yes, mine was the size of a tennis ball.  3 years ago this month I had surgery where they de- bulked it.  It was pressing on my brain stem and spinal cord.   3 months later it was followed up with cyber knife.  I still get MRI's to see what is happening with the remainder of the tumor. I also have the deafness, partial facial paralysis and balance issues.  I am not working because of over- stimulation issues, and exhaustion.  It has been life changing, but my faith keeps me going and I try to count my blessing every day.
Please let us know what happens with your MRI.  Karen

[Jim Scott]

Hi, ginsue - welcome to the forums!

Your attitude is infectiously uplifting!  I'm curious as to what the MRI scan showed, if anything.  Please let us know as soon as you know.  Thanks.

Jim

[leapyrtwins]

Biggest AN on the Forum that I recall was Satman - a whopping 8 cms.

Hard to believe, but true.

Jan

[ginsue]

All My MRI had no changes thank God 
MikeThanks for the welcome
Karen I have never meet anyone with the same story either (except mine is right side) Looking at your signature I see that you have a gold weight also.  I also in addition to the gold weight have had my face tied up with fascia from my thigh.  One side anchored to my ear and the other end to my nose, corner of mouth and brae area.  This helps with speech, breathing  and makes me look normal (as I can be) until I talk and you see that my mouth doesn't move.  I do work - hairdresser. I took two years off and weaned back into it.  It takes awhile to get used to feeling different but I did eventually.
Jim I'm glad that you caught my spirit.  It is important how you view yourself. We get just a short time here so I wish to enjoy it!
Jan nice meeting you.  Poor Satman nobody wants that title.  Wikipedia says that a tennis ball is 6.7cm, but I have no measurement as to mine.

[KBL]

Hi, I'm so glad to hear there is no change.  I hope they can find the cause of your headaches.  I'm glad you were able to move on and work.  You definitely have some challenges to deal with.  I agree that attitude makes all the difference.  I am 50 years old also.  I am trying to not let my AN define who I am.  I went from being a athletic, energetic woman, to constant fatigue.  That has been a challenge.  Yet I know, given the size of the tumor, things could have been so much worse.  I can say the tumor has made me much more appreciative for all that I have.  I am so glad you found us.

[jaylogs]

Hey! Glad to meet you!! As it is true in life sometimes, better late than never!!  Glad you can share your wisdom and life lessons with those who are just now starting this journey!  Just an FYI to everyone, a tennis ball is about 6.5cm, so that's a pretty hefty AN!!  Glad you joined us! Take care!
Jay

[ginsue]

Nice meeting you Jay.
 I don't remember why I got here but I'm glad that I did.  I have found so much new info. My brain is full. I have not seen a neurologist for 20 years.  My regular doctor orders my MRI's every two years (didn't know that was too often).   I have never heard of so many things, I'm just reading everything. Didn't know what a BAHA was.  The last I knew they only had the Bi Cross hearing aid.  I have already called my insurance to see about a Soundbite device. They will cover 85%.  I actually started crying with the thought of hearing again.  I knew nothing of the Jones tube, now that one I will probably pass on since the tears only occurs when sweating. I'm already use to keeping a tissue in my hand when I'm outside in the summertime. I could go on and on.  I am so thankful that I found you guys.  I may have longevity but you guys have the knowledge.