and I thought for a long time that others were just mumbling!!!

[djay]

It turned out not to be true. I finally had a hearing test two years ago that showed a moderate hearing loss on the left side. No big deal. A set of hearing aides would solve the problem.  I probably wouldn't wear them so I passed. A year goes by and folks keep mumbling and I'm missing more and more of God only knows what.

I get a follow up hearing evaluation and the concerned audiologist asks if I am also having tinnitus and dizziness (Has she been reading my mail?).... and I say, "Yes... And?"

They schedule an MRI. They have my full and undivided attention now. Mumbling may not be the issue after all.

It's not the hearing loss that really bothers me. It's not the crickets always ringing in my ears, even when I'm inside the house. It's the feeling punk and the swimmi-headedness and the dizziness. Waking up in the morning and feeling washed out like I am having an unending bout with allergies... and don't feel particularly good.

I had a Gamma Knife procedure 6 weeks ago for an AN "shaped like Italy" and 16mm "north to south." The open skull surgery option sounded gruesome and a very hard sell for me at 63 years of age.

No... lets do the outpatient procedure... and we did.

I am still trying to figure out how I am supposed to feel at this point. My balance has deteriorated for darn sure since the procedure  but my sense of humor is still intact. I would be lying if I said that I was glad to be here... but a retired neurosurgeon suggested to me that if fate  required that I have a tumor inside my skull, I would choose an AN by a wide margin.

OKAY!!!

As I have come to believe after careful reconsideration.... good... no... great  to be here!

djay

[Jackie]

Welcome to the forum DJay,

Are you feeling any better, about the same, or worse since you had Gamma Knife??? I can relate, as far as who really needs to deal with this at our ages, right, or any age for that fact!! Hope you are able to go forward and enjoy life, as they say there is life after AN procedures!!! Good-luck and may the blessings be many.
Jackie

[Sue]

Hi,
I think that they teach that phrase in med school, because many of us on here have heard "if you had to pick a brain tumor, this is the one to pick" comment.  Well, THEY don't have to live with it, even though it is obviously the lesser of many evils.  Still and all, for some of us, this ain't no picnic in the park either.  I am sorry you are feeling low down and funky.  It just takes time...lots of time.  The Wonky Head usually abates after your good nerve figures out it is alone in the battle for keeping you upright.  It has probably slowly been doing that, as the other nerve is slowly giving up it's job, but after GK, things can flare up and get irritated and annoyed.  I was 60 when I went through this, so I understand that we also have some years that aren't helping any at times.  You are supposed to feel how ever you feel at this time.  You can go through all the phases of grief because you have lost something and things are different and it's only natural.  I revisit "anger", but not as much as I used to.  Eventually you will get to acceptance because you just will, that's why.  I had GK but I didn't have much hearing to save and it's deteriorated more, so that I'm mostly deaf in the left and there are adjustments to make with that.  I have constant buzzing noises and that brings more adjustments.  That's mostly where my anger lies, I believe.  But, amazingly, our brain, while manufacturing this noise also learns to adjust to it and a person can and usually does learn to live with it.  So, hopefully, this forum can be of some help to you.  Ask any question, grieve any complaint, post any concerns, frustrations or fears.  Somebody will have some kind of an answer, or offer a shoulder to cry on, or a strong arm to lift you up.  There are some amazing people on here.  So sorry you have had to find us, but so happy you did.  Hang in there, it will get better. 

Sue in Vancouver USA

[4cm in Pacific Northwest]

As I have come to believe after careful reconsideration.... good... no... great  to be here!

DJay,

You have a great attitude.   Welcome! Sorry for the reasons you had to find us neverthless glad you are here.

DHM

[sgerrard]

Hi DJay,

Glad to hear your sense of humor survived. Six weeks is still pretty early; I think most radiation patients go through some "episodes" during the first six months to a year. I am two years out now, and still have the crickets (they sound very realistic outdoors, and very out of place in the hearing test booth), but after my "bad Christmas" 3 months after radiation, I have not had any swimming head or the hyper-allergy feeling. The second year is definitely better.

I am curious whether you had any balance issues before treatment, or had it tested at all. Usually you do adjust to the change in balance, but there have been some who have nagging balance issues that are harder to get used to. As with most things AN, it all depends.

Best wishes and welcome.

Steve

[djay]

Thanks for the encouragement, you guys/gals. I needed that big time. My balance has never been tested as such. Sounds like a good idea though. No one had suggested this so far.

Prior to the GK procedure, I had consistently complained about dizziness and light-headedness but not "balance" as such. Now I have a "balance" issue since the GK that I really want to get over. Yes 6 weeks does seem to be "early" based on what all I am hearing/reading in this forum... really early.

At the 6 week routine follow up, they are making noises about doing another MRI based on my balance complaints. Seems like a waste of time/resources to me, unlikely to show anything. I am also getting what may amount to some "misinformation" about the procedure and what to expect.

Seems to me that the balance nerve on the AN side has been "twanged" by the GK and that might explain the decrease in balance. YES/NO???

That's where maybe this forum can help.

djay

[leapyrtwins]

The open skull surgery option sounded gruesome

Hi, djay, and welcome to the Forum!  I'm SO glad you found us and I'm also very happy that you chose GK and that it was the best choice for you.

I hope your recovery continues to go smoothly; as you note, 6 weeks is still fairly early in the scope of things.

I just want to assure other newbies that surgery is not as "gruesome" as it sounds.  Treatment choice is a personal decision and some of us do choose surgery    And we're quite happy with our choice 

Best,

Jan

[Sue]

Djay, you might find this article interesting.  It doesn't offer anything in the way of solving balance issues, but it certainly does explain everything that happens to us because of balance issues. It's very interesting.  You'd be amazed at what all is connected to our balance system.  It's a very important thing to have functioning properly!!  I wish I could have read this early on in my AN journey.  This explains a lot of things that was happening to me way before I was diagnosed.  I had the "car anxiety" thing going on for a few years.  Crazy, crazy, crazy.

http://www.hearinglosshelp.com/articles/balancesystem.htm

Sue in Vancouver, USA

[Jim Scott]

Hi, Djay ~

Just popping in to dust off the welcome mat for you. 

I underwent AN removal surgery, then radiation (FSR) at age 63 and was did quite well, all things considered.  No complications and hardly gruesome, at least from my point of view.  It probably looked a lot worse to the neurosurgeon doing the cutting and drilling. 

The reality here is that whether you undergo surgery or radiation (or both), recovery and, more accurately, what I call 'regaining normalcy' does take time.  At our age, that can be be a bit daunting, I know. (insert 'September Song' lyric here): "But the days grow short when you reach September.  One hasn't got time for the waiting game."  Unfortunately, we just have to find the time.

Having the attitude that this stupid little tumor was interfering with my retirement and deciding that I was going to get my life back, I used my basically complication-free surgery/radiation outcome as a launching pad to regain my own normalcy.  I did the balance exercises with a grim determination despite creaking knees and some huffing and puffing.  I practiced walking up and down our stairs without grabbing the handrail.  I did a lot of walking that year - probably more than I've done since.  Although progress was a tad slow, I did regain most of my balance ability and avoided any real post-op problems.   Today, a bit over 3 years later, I'm fine.  Oh, I have a few tiny reminders that I had an acoustic neuroma but they are not visible to others (a small 'numb spot' on the side of my tongue, for example) and don't have any real impact on my life, which is going along quite nicely.  I trust you'll soon surmount any difficulties or they'll simply abate and you'll be doing just fine, too.  If we can help with information and/or advice, just ask.  The folks posting here have a lot to offer and are always eager to help.

Jim

[djay]

Well I am certainly not shy about asking questions. Don't mind showing my ignorance.

Anything involving sharp knives or drill bits I find "gruesome" and try my best to avoid.

I used to run a lot (craved the runner's high) to stay in shape.... then my aging joints started screaming at me and I stopped. I also stopped being in shape too.

I recently decided to regain my "svelte youthful vigor" and lost about 15 pounds with a careful diet and bought an elliptical trainer for exercise. Despite the balance/dizziness, I can run myself silly by hanging on to the dual purpose handle bars, moving my feet and exercising for all I am worth. The runner's high has returned as has my cardio-endurance.

I need a good set of balance exercises to do daily.

It's nice getting back in shape.... finally... despite the feeling that I am about to fall down most of the time. Hopefully that too will pass.

If it doesn't, I will simply have to learn to pick myself up.



djay

[sreda]

Hey DJay -
I am 51 years old and 4 - or is it 5 now? - years post op after surgery to remove my smallish AN on the left side. I had mild balance issues before surgery, and PRONOUNCED balance issues after, but they did diminish in 2-3 months, and almost disappeared after 4-6 months. My brain completely adjusted and now i only have balance/dizzy issues if I am extremely tired. So 'tho I know you had a different procedure, I encourage you to expect large improvement on this score. More discouraging to me is that I have gradually lost more speech recog. on the affected side, and have constant tinnitus. But my brain has adjusted to that too, and I am not usually concious of the "noise" in my ear. I consulted with my surgeons about all of this 2-3 yrs. after sugery - they are responsive doctors - and they feel these two things may be a result of scar tissue that formed left behind when the tumor was removed. However, all in all, I would choose AN removal again, as my face and eyelid function  were not affected, and I would have probably had the loss of hearing anyway as the tumor grew. I do believe your balance will improve, 'specially because you are as active as you are.  My docs said that activity would enhance balance recovery.

[Darin]

Hey DJay, I had AN surgery about 9 weeks ago, and have been going to physical therapy once or twice a week since surgery. The physical therapist gave me balance exercises to do twice a day. Basically stand on one foot, if that's easy, look left then right then left. And speed it up if that's easy. Try eyes closed. That's just to give you an idea of the style of exercises. I left the hospital in a wheelchair, and used a cane getting around the house for a few days. Now, this morning I ran two miles! I know the more I do the exercises, the better balance I have. I'm glad to read that you do elliptical trainer, exercise has been so helpful, physically and especially mentally. Hopefully the balance issues will get better for you over time. - Darin

[djay]

I found a set of vestibular exercises on the internet that I might be able to integrate into my elliptical training. I might as well push the envelope a wee bit and see just how much swimmi headed I can tolerate while on the elliptical.

I'm not going to fall down and it just might distract me from my exercise fatigue while I am listening to the Rollng Stones ("Start MeUp") on my ipod headphones and running to the music for all I am worth.

Can't hurt!!! Might help! Little to lose at this point. A new form of healing meditation!

If it's just a matter of hard work, I can get there. I certainly don't like feeling PUNK!

djay