3 year results-post radiation

[Dealy]

Good News from my 3 year Post-Radiation at Johns Hopkins. I will give a small summary for those new to this site and my circumstances. My first AN occured in 1988 on the Left side-1.5 CM. I had it removed in Kansas City with no complications-but they removed my hearing nerve. i was told this was an isolated incident. I decided to have no MRI's. Bad Mistake. Fast forward to 2005-My Right side of my face goes numb at work. Subsequent MRI shows another AN in my right ear. Measures 2.4 to 2.5. I waited a year to monitor it-it grew about 2mm I was told. Decided to have 25 sessions of fractionated FSR at Johns Hopkins in 2006. I have gradually lost ny hearing in that ear-but can hear with the use of a hearing aid. NOW- the results of this MRI. The acoustic neuroma on the right side measures 1.76x1.65 compared to 2.1x1.8 in the previous examination a year ago. It appears to be somewhat smaller to last exam. My Hearing Test Results- 86% word recognition and 20% Hearing loss in the 2000 hertz Range. So overall good news. It should be noted that I am an NF2-so these results at this point is more than I expected. Some of you will recognize me on this site-and for those reading this for the first time-or someone that may be NF2-never never give up hope. You see I thought my world was lost when I had my 1st AN in 1988 and lost total hearing in my left ear. I survived that ordeal and went 18 years with one sided hearing. Now what I would give to have just that back. I figure one day I will probably go totally deaf-but back in 2005 I never dreamed of still being able to hear some. People always say-time heals all wounds. Well it has been 4 years since this all started and I take a day at a time. I also have obtained a deep faith which was waning before. I guess one never knows what each day will bring-so you deal with each day at a time. Thanks all for those of you who may read this post. If I have relieved someone's anxiety about having an AN-then that is GOOD enough for me. God Bless and Have A Great Day you all.
Thanks-Ron

[Vivian B.]

Hi Ron,

Thank you for posting your good hearted experience. It could not have come at a  better time for me. Since my balance test on Monday, my anxiety is back and can't seem to shake it off. Your thoughts have made it a little easier. I am so glad you are feeling better about all of this and have found a way to come to terms with it. I am still strugling, but one day at a time will hopefully get me there.

Thanks again.

Vivian.

[Dealy]

Vivian: When I had my first AN in 1988-their was really no one to talk too to share my fears and anxiety at that time. This forum is so helpful because people can relate to your experience. However we all have different means of coping. This forum meant so much to me when I started my journey 4 years ago and it still does. It's like you have a friend sitting next too you that will gine you reassurance that sooner or later-it will all work out. That does not mean the road will be easy. Many days and nights I stressed out what to do and where to go and what might happen. If I could grap your hand now in mine I would tell you to keep faith and hope-and believe me it will work out some how. I guess this is one good thing about the Iternet now- Let it be known that I do care about you and wish you all the best. Ron (Your Friend) in Kansas.

[Vivian B.]

Hi Ron,

Thanks so much for your kind words. Like I said this week has not been easy. I sit at home now trying to get myself together to go into work tomorrow. I will think about what you said.

By the way I am in Canada.

Vivian

[ppearl214]

Ron

Oh, the blessings! Congrats on this update and am SOOOO thrilled to hear that the zapped AN is behaving itself and you are doing well!  You've been through such a difficult road and it seems like yesterday you had the FSR, but I am soooo thrilled that you have a terrific servicable hearing in that ear, that the booger is smaller and reacting well to the radiation.

You are truly blessed... thank you SO much for sharing this with us, as it definately gives insight into your journey.

Continued wellness wishes and hugglez... you know it!

Phyl

[Dealy]

Phyl- You know you are one of those person's that will always be in my heart. Thank you for your consideration. Yes it was good news about the booger. My wife and I were on pins and needles wondered what we would do if the booger had grown. The surgeon in KC was kinda balking at consideration of surgery so LA at the House Institute would have been my only option. Whew-that was a relief off our minds. The journey has not been easy by no means when I look back-but sometimes one has no choice but to accept what life has given you. Although I would not wish this on my worst enemy. Thanks Phyl-with all my heart-Ron

[Cheryl R]

Ron, I have been wondering how you have been doing.   Good to hear that you are not having any increased problems as that is always a worry that it could happen.             I had no new tumors with my dr visit in April so know how nerve wracking it is to wonder and hope there is no change or maybe even improvement!                      I hope it contines for you to do as well as you are!                         Cheryl R

[Jim Scott]

Hi, Ron ~

Your good news update is much appreciated and your wise advice to never give up hope is well-taken by many, I'm sure.

As an FSR patient I'm very pleased to learn of your latest, positive MRI results.  I believe FSR to be very effective on ANs and I trust my next MRI (about 6 weeks from now) will continue to show tumor necrosis and shrinkage, as my 2008 scan did. 
 
Thanks for posting and of course, our best wishes for your continued improvement.  You've done a service for many NF2ers with just one post. 

Jim

[GM]

Congrats on the tumor shrinkage!!  It's always great to hear good news!

Gary

[Betsy]

Thanks for sharing your good news and your wonderful outlook with us Ron!

[Dealy]

Thanks to you all for the nice compliments you have provided. it is always heartening to hear other people share your success with you-even though none of us really wanted to be on this site to begin with. Gary-GM- I actually thought of you the other day. You were one of those on our old group before I even went to Baltimore for treatment. How are you doing? I have not forgotten the rest of you either. Take care and Have a Good Day All. Ron

[sgerrard]

Good to hear the news, Ron. Have a great year #4.

Steve

[GM]

Ron,

Doing great!!   Keeping busy with work and my honey-do-lists with the house      Good to see familiar faces as well!

[Dizzy miss]

Ron,

I admire you what a journey you are on and yet you still want to help others.  Thank you many times over.

God Bless you.   

Dizzy Miss