Is my condition typical

[kathee]

Hi,

I'm new to this.  I was diagnosed 3 years ago with AN and told to do the watch and wait approach.  Had quite a bit of dizziness at first, but still made it to work.  AN stayed the same size.
About 4 months ago, I started having extreme dizzy attacks (spinning), to the point where I sometimes fall down.  I also have ringing in the ear (sometimes extreme), pressure, and hearing loss, which seems worse on some days than others.  The worst part is that I can't think clearly.  I make all kinds of spelling mistakes, forget things, use the wrong words, and can't judge distances etc.  Most days I been using a trekking (walking) stick at work to steady myself.
The strangest part is that sometimes I feel great for a day or two.
I had another MRI and AN has grown about 2mm. 
I'm wondering if anyone else has had these problems, and how they are dealing with them.

Thanks,

Kathee

[sgerrard]

Hi Kathee,

Welcome to the forum. Many of the symptoms you describe are quite common.  Ringing, pressure, and hearing loss are pretty much par for the course. You might want to look at the posts in the new Cognitive/Emotional section, where lots of people are talking about spelling problems, using wrong words, and things like that as well.

The spinning dizzy attacks strong enough to get you falling down are less common, and a significant symptom. That issue, along with signs of growth, could well mean that your watch and wait days are over - or should be.

Others will be along in the morning to fill you in more. Please make yourself at home; you are among friends here.

Steve

[hruss]

Hi kathee,

welcome to the forum.
Your several years watch and wait status should be changed (talking of no doctors point of view, though).
Having strong vertigo (spinning) is a very serious issue. I had it (and still have it) last year and actually this was the only symptom to make my doctors put me into the MRI tube. now i have it because after the two resections i had they turned out to be partial and this time i ma planning a surgery abroad. if your AN is small radiation would be an option - in my case the tumour is very large for any radiation.  I will have my next MRI on Oct 2. it will be with contrast.

I am sick these days and my spinning is even worse - yesterday i was at the hospital because i felt very sick and i could hardly walk steadily.  I was alone and i was going to ring to a friend to come and help me walk when my brother landed (he was on a business trip in Germany) and came straight from the airport to the hospital. without his help i would not be able to walk home.

You better talk to a doctor asap.

Stay around - this forum is full of useful information.
Very best to you,
Hrissy

[ppearl214]

Hi Kathee and welcome.  Good to see you here participating.

What you note is not unusual for many AN'ers.  Please keep in mind that head MRI's have a +/- factor of 2mm, so if your MRI is showing  a difference of 2mm, you are approx the same as your last MRI..... different conditions can factor to that 2mm....so, you are about the same.

As to enhanced symptoms such as vertigo, etc.... as you may know, its not just hearing that can be affected but balance as well. Please take time to read the forums here as there is much to learn from others that share here.  There is also a new forum re: Cognitive/Emotional Issues... which discussions have been along the same lines that you noted ......

Again, welcome to the forums.....
Phyl

[leapyrtwins]

Hi, Kathee 

While it seems that not everyone with an AN experiences exactly the same things, as others have said, what you are describing is very typical.

If you haven't already, you should contact the ANA and ask them for their informational literature; I found it extremely helpful.

Hang in there,

Jan

[andrea in slc]

Hi Kathee

I'm a newbie here too, but your symptoms sound very similar to mine, except for the spinning enough to fall down. I use a trekking stick too (hey, beats a walker for right now), and that helps somewhat.

After your MRI, what did your doc say? Do they still want to watch, or figure out what the next step is? This place is great for learning about your AN, and your different options. Check it out!

And remember, you are not alone with this. We all can relate, so feel free to ask any questions, everyone is very nice and helpful!

[kathee]

Thanks to all who replied.

My doctor says I need to do something within the next 4-6 months.  I am going to the Barrow Neuro Center in Phoenix for an evaluation in a couple of weeks.  Anybody out there been to Barrow?

Thanks,

Kathee

Hi Kathee

I'm a newbie here too, but your symptoms sound very similar to mine, except for the spinning enough to fall down. I use a trekking stick too (hey, beats a walker for right now), and that helps somewhat.

After your MRI, what did your doc say? Do they still want to watch, or figure out what the next step is? This place is great for learning about your AN, and your different options. Check it out!

And remember, you are not alone with this. We all can relate, so feel free to ask any questions, everyone is very nice and helpful!

[leapyrtwins]

Kathee -

some here have been to Barrow.

I know MaryBKAriz had radiation there not too long ago, and it seems to me that someone else is going there for either a consultation or surgery soon.  Did you search on "Barrow"?

Jan

[ppearl214]

Hi Kathee,

Jan is right (but don't tell her I said that! )

MaryBKAZ had Cyberknife Radio-surgery at BNI (Barrows)... as well as Shoegirl (Suzanne).  Try doing a "search" option here for Barrows and you will see the location discussed much.  Dr. Kressl is fabulous there from what I hear......

Hang in there!
Phyl

Kathee -

some here have been to Barrow.

I know MaryBKAriz had radiation there not too long ago, and it seems to me that someone else is going there for either a consultation or surgery soon.  Did you search on "Barrow"?

Jan

[msmaggie]

I just sent my MRI to the Barrow Institute for a film review.  Probably won't hear from them until the end of next week at the earliest.  At least I hope so!  We are taking the 3/4/5 graders on a three day camp experience next Wed.-Fri.    Pray for me!

Mags

[fbarbera]

Hi Kathee,

In light of your symptoms, it does make sense to begin thinking about a treatment.  Most likely, you'll have to choose generally between surgery and radiation.  Some folks seem to know right from the start which choice they prefer, though I personally found the decision pretty confusing.  I have written about the process that I went through when I was trying to decide on a treatment on my website below (in my signature line).  I also describe my progress since treatment and some general tips for newly diagnosed patients.  Barrow, I think, is a great place to start since they are, I believe, well regarded in both surgery and radiotherapy.  I am a big fan, however, of receiving consultations from multiple neurosurgeons to make sure you are getting the full range of options and opinions about the best course of treatment.

Best wishes to you and please keep us informed and stick around.

Francesco

[kathee]

Hi Mags,

Barrow got back to me in about a week.  They sound very nice and considerate.  I live in the Midwest and will need to travel to Phoenix, so they set up all my appointments in a four day period.  They have a coordinator, Maggie Varland, who was especially helpful.  In fact, she was the one who suggested the ANA to me.

Good Luck and God Bless

Kathee




[quote author=msmaggie link=topic=7576.msg79950#msg79950 date=122245741



I just sent my MRI to the Barrow Institute for a film review.  Probably won't hear from them until the end of next week at the earliest.  At least I hope so!  We are taking the 3/4/5 graders on a three day camp experience next Wed.-Fri.    Pray for me!

Mags
[/quote]

[leapyrtwins]

Kathee -

don't know where in the Midwest you live, but I had my surgery just outside of Chicago @ The Ear Institute of Chicago (www.chicagoear.com) and I highly recommend them.  They do both radiation (Gamma Knife) and surgery.

Michigan Ear is another wonderful facility worth checking out.

Jan

[MAlegant]

Hi,
My doctor trained at Barrows and he was excellent.
Marci