profile what to expect...

[james e]

I have already been welcomed to the group...had stroke in April, heart surgery in May, tumor in December...a year to forget. I need some help knowing what to expect while I wait out the next 6 months waiting for the next MRI.

Last week is when the tumor was found. I was so dizzy, and the vertigo was so bad that I had an awful time just standing up. The doc put me on zofran and that was a God send. Yesterday I did not take a tablet, and I worked all day, and felt pretty good.  This morning I felt great until I went out to feed the birds...then dizzy. I had been dizzy for very short periods of time, usually just minutes, before I found out I had the tumor. Then the dizzy never stopped. I found out about the tumor. Yesterday was the first day I was not dizzy in a week.

Does the dizzy vertigo ever go away for any of you? If it does, how long does it go away? Does it get worse? I'm not cry-babying, just trying to find out what to expect. Can you fill me in with what YOU went through or what YOU are still going through?

After my stroke, I went to speech school and I can talk, but I have word searching problems, but my wife and I are both used to that, and at times it can get very funny...but we know what to expect. Two days ago, we went for a walk, and she knows to walk on my left side to keep me from "changing lanes". We are trying to laugh about this. Have any of you learned to laugh about what is going on in your life? Although this has been a bad year health wise, it has been one of the better years in my life. I know that my wife loves me, and she has been my ROCK, and health problems have made us even closer.

[sgerrard]

Although this has been a bad year health wise, it has been one of the better years in my life. I know that my wife loves me, and she has been my ROCK, and health problems have made us even closer.

I think this experience is quite common. An acoustic neuroma diagnosis, while no fun to treat, can change your perspective on life in a good way.

As for the dizziness, it seems to run all over the place, from a minor inconvenience to a serious problem. It really depends on your particular case. There is a good chance, though, that it will be relatively minor issue during the next six months, just enough to remind you that you have an AN.

Enjoy the holidays.

Steve

[Pembo]

I had a couple dizzy days in the years before I knew about my tumor and one spell that lasted 6 weeks. Then 4 years later I got a dizzy spell that only got worse until I had the tumor removed. However my tumor was 4 cm. I can tell you that I never had dizzy spells since surgery...once in awhile I get a little off-kilter feeling but it goes away in seconds.

Sorry to hear of all your health troubles. And I always say if you can't laugh about your troubles, then all you'll do is cry.

[CHD63]

James .....

My dizziness is more disorientation (not knowing where "up" is sometimes) and not the room spinning with what I would call vertigo.  As you have no doubt seen on here, our friend, Deb, coined the term wonkyheaded and that is such an accurate description of what I have.  Before and immediately after surgery I had this disorientation feeling very frequently ..... and had several falls not knowing I was falling until it was too late to prevent hitting the ground.  Now I mainly have these spells when I am way over tired or stressed or too much salt intake.

Clarice

[lori67]

James,

It sure does sound like you've had one heck of a year!  Let's hope next year is uneventful for you!

I never really had the dizziness issue, but as far as laughing at myself - absolutely!  Sometimes it's just all you can do.  Most times when something unusual happens to me (I tend to "change lanes" too), I get to laughing just thinking about what I must look like to others!  I had the word searching problem shortly after my surgery and while that can be frustrating, it was usually good for laugh or two, since you never knew what was going to come out of my mouth!

I'm sure this past year has made you very aware of how minor some things can be and how there's not much point in stressing out too much over little things.

I hope the next 6 months goes smoothly without too many reasons to laugh at yourself.  It is a huge help to have a supportive spouse along for the ride.  And you can always  give yourself a break and laugh at us from time to time!  We don't mind.   

Lori

[Jim Scott]

James ~

You pose some very relevant questions that I'll attempt to address - as a patient - with mostly my own experience as a source, although others have and will continue to respond to your query, I'm sure.

Just prior to my AN debulking surgery I suffered from rather severe dizziness (but no vertigo).  I could not walk up or down a staircase without clinging to the handrail.  That pretty much disappeared immediately following the surgery, even though the AN was still there, just reduced in size (from 4.5 to 2.5 cm).  I did need some time - and had to make some real effort - to regain most of my normal balance, which I did, within a few months, although it never was quite the same as it had been before the AN symptoms appeared.  My subsequent 26 FSR treatments definitely did much damage to the remaining tumor but had no ill effect on me.  My balance was not improved or worsened by the radiation but I no longer even need a handrail when ascending or descending stairs.  Today, some 3+ years later, I consider my balance to be quite 'serviceable', if not exactly 100%.  I'm not complaining.  However, that is one patient's experience and not necessarily a template for what you or anyone else may experience following radiation or surgery procedures.  Of course, I very much hope that whatever course you take in addressing your AN, you'll experience a similarly successful outcome.

Jim

[kiwi]

Hi James

Sorry to hear about your bad health year...I too hope the next year is uneventful!

I am so dizzy I can hardly walk now.  I cannot drive due to the fact that turning my head to check for traffic almost causes me to pass out.  I feel like I have been drinking so much that I have one heck of a wobble on.  I am not scheduled for surgery until next year and I am hoping my balance issues will disappear....It might take a while though.

Having these health problems sure does make you take notice of the more important things in life that you never really had the time to notice before.  Sadly my tumour has made me a better person now.  Hope all goes well for you.

Jacqui