It was a year ago today

[Raven]

Little did I know that a year ago today would be the last time I would be able to hear anything in my left ear. The next morning I woke up and could hear nothing in my left ear. After a visit to my regular Dr. to remove some ear wax from my left ear I didn't give it another thought until the next day when I still couldn't hear. At this point I went to Dr. Katie Day, an ENT who put me on Prednisone and ordered an MRI, as she said, "to rule out the slim chance something else is going on". Two weeks later I go back with MRI in hand and no left side hearing. It was then I first heard the words acoustic neuroma and NF2, I think I was her second billateral AN paitent she had ever seen. But I was still thinking the hearing loss was temporary, until I found this forum. I would spend hours every day here and realized how serious this was and that I could possibly end up totally deaf. Thank God for Dr. Katie Day, she was on the ball by ordering the MRI and for referring my to Dr. Eisenman at the University of Maryland Medical Center. He performed two middle fossa surgeries flawlessly............NO FACIAL ISSUES. Today I'm pretty much back to full strength and doing everything I used to before the surgeries, albeit sometimes not very gracefull. I've learned to live with the tinittus in both ears and SSD is manageable. However the balance problem makes me feel yucky everyday and is a constant reminder of just how serious ANs can be, sometimes I get depressed............But remember, it could be worse!! I hope that some of the newly diagnosed will read this and realize there are positive outcomes. That's my AN story...............to be continued? Who knows

Anyway, I'm getting an MRI today and seeing Dr. Eisenman tomorrow. Hopefully there will be nothing bad to report.

Thanks for "listening" everybody

John

[FAITH40]

JOHN,

AWESOME!!! GOOD LUCK , AND I HOPE ALL GOES WELL WITH THE MRI!!!

GOD IS GREAT!!!

TAMMI

[leapyrtwins]

John -

it doesn't seem like almost a year since you first joined us.  I remember when you were a newbie; you've come a long way since then 

You are fortunate to have an ENT astute enough to pick on the AN as fast as she did and you are truly blessed to have a great surgeon who performed not one, but two surgeries on you.

Despite your balance issues, it sounds like you are doing well.  I hope this is the end of your AN journey and that the future holds only positive things for you.

Jan

[Cheryl R]

John, Hard to believe it is a year already.          I hope the MRI and Dr visit go well and there is no change.                I well know that being NF2 makes it be such a nerve wracking time and hope for no growth.                 I wish you well and do know how the "to be continued" will always be part of our life.            Good luck today and tomorrow!
                                                  Cheryl R

[Debbi]

John-

Good luck today. 

And, thank you for posting - it is good to hear from people who are further along than me and to hear that you've adjusted to the "new normal."

Debbi

[lori67]

John,

Good luck on your MRI.  Let's hope the eventfulness of the past year is over and this next year is calm and smooth sailing!

Lori

[Omaschwannoma]

John,

Your progress is to be commended and your positive outcome/attitude will surely be helpful to those who think there are only bad outcomes.  You certainly are the most challenged, with the NF2 diagnosis, among the ANers here and I hold a special place in my heart for you and others alike as I have come close to "feeling" what it is like to be "balance challanged"--every time you get up an move around can make you exhausted, frustrated, depressed and nauseous.  I bow to your spirit and hope you have a positive report for us in your next post. 

[Jim Scott]

Hi, John:

Your comments are much appreciated.  I'm pleased to learn how well you've recuperated from double surgery and how you've basically returned to normalcy.  That is awesome! 

As you noted, your story should help the newly diagnosed who so often read or hear about the negative stuff associated with an AN diagnosis.  I believe in being realistic here - Acoustic Neuromas are a minefield - but not every AN patient has debilitating complications or long-term issues and they need to be heard, too.  Thanks for being one of those. 

Jim

[4cm in Pacific Northwest]

John,

Way to go on your recovery! If we look at our cup as half full ,rather than half empty, we can keep moving forward.

RE
“However the balance problem makes me feel yucky everyday and is a constant reminder of just how serious ANs can be, sometimes I get depressed...â€? 

You really need to go to a vestibular therapist and get some testing and evaluation done- to find out what points are having the balance issues and how you are compensating. Balance sensors come from the soles of the feet, the hips, the ears and the eyes… take one away, such as the vestibular/acoustic nerve and your brain needs to be trained on how to compensate.

Don’t let any physician tell you that vestibular therapy does not work.
Here I my story
http://anausa.org/forum/index.php?topic=5584.0

Bobbie makes this post
http://anausa.org/forum/index.php?topic=6180.0
I find that walking backward up hill has really helped me retrain. (However the neighbors, I am sure, are quite convinced that I am loopy as they see me do this- I am sure they are convinced it was the brain surgery)


This explains what vestibular therapy is
http://www.vestibular.org/vestibular-disorders/treatment/vestibular-rehab.php

Now that you inner ear was affected you need to “retrain the brain�

Here is a link to help you find a vestibular rehabilitation physical therapist in your area
http://www.vestibular.org/find-medical-help/search-for-a-health-professional.php
Check with you insurance- you “may� need a physicians’ referral.

Here is a search engine to find support groups on balance issues to.
http://www.vestibular.org/support-groups/find-support-group.php

The brain is very plastic and most capable of retraining. The technology they have out there now-a-days is amazing.

If you have not already seen this documentary video (the vestibular part is in the last 1/3) – I recommend viewing it as it is highly inspirational.
http://www.pbs.org/kcet/wiredscience/video/286-mixed_feelings_.html


Cheers,

Daisy Head Mayzie

[Raven]

Thanks everyone for the kind replies, especially CherylR (my NF2 sister).

Well, I met with my Dr. and here is what is happening.................took a hearing test and it showed slight improvement in the right side, left side still has life even know I can't hear a thing in it. I think the improvement in the right side was I had the hearing test done ten minutes after fluid was drained from the inner ear six months ago. I had an MRI shortly after my second surgery back in November and they compared it to the MRI I had yesterday. The left side where the tumor was removed looks the same, still gone! The right side appears to have not incresed in size at all. I walked out of the Dr.s office feeling pretty good. I asked if he had seen any other people with bilatteral ANs since he first saw me last July........NO. I also asked if I need MRIs the rest of my life......YES. Next MRI is six months from now.

Now I have another issue to deal with..............is it possible to be a "postie" while you are in "wait and watch"

Have a great weekend everybody

John

[Cheryl R]

 John,  It is good to hear that all went well this time around.      That is about the best way to describe when one has to be checked out  on an every 6 mo basis.      It gets very nerve wracking and then a sigh of relief when there has been no change. 
     Being also a  NF2er with way too much AN experience lets us use all the AN expressions there are out there.                         Radiation is my only unused AN experience.   I think personally I am better off for not having had any also due to nerve damage that then could have affected a nerve when another tumor showed up.  None of mine have been reoccurence.
         Super that you can now get back to our "normal" lives until next time!
                                        Cheryl R
     

[Jim Scott]

is it possible to be a "postie" while you are in "wait and watch" 

Of course it is - you've had two (2) AN surgeries! 

Post-treatment, be it surgery or radiation, we're all having annual or semi-annual MRI scans and hoping (praying, in many cases) for no growth or re-growth.  So, in a sense, we're all 'watching and waiting'.  Join the club. 

Jim

[Raven]

 Radiation is my only unused AN experience. 
     

Yea, same here.........but if the right side AN needs to be taken care of my Dr. said it would have to be radiation.

John

[Cheryl R]

My neurotologist is against radiation for NF2s.              Each dr seems to have their own view on how to treat patients I am finding on coming across other patients.            Another NF2 who goes to Mayo gets a whole different  perspective also.    They do agree on radiation for some NF2s.   
                                                   Cheryl R