Symptoms getting worse quickly

[Kbthor]

Hi all,

I have been lurking on the message boards for a while, and have gotten a lot of really great information from them.  But I have a few questions that maybe someone can answer/address.

I am 37, and have a left sided AN that is about 3cm.  I found out mid-July of this year.  I am scheduled to have surgery with Golfinos/Roland in October.

My symptoms started around October last year.  I had a ringing in my left ear that just would not go away.  I finally went to an ENT in February - she prescribed steroids first (didn't work obviously), and then  I saw her again in March and she said I had to do an MRI to rule out a tumor.  I didn't rush to get the MRI done right away because she didn't think it was a tumor and because I am an idiot . Anyway, in April or May, I developed a numb spot on the left side of my face under my lip.  I didn't realize it was a numb spot though until the left side of my lip and then the left side of my tongue started to go numb in late June/early July.  Once I realized, I freaked out, did some research on line, and got the MRI done really fast.  I met with a few doctors in July and August, but decided to go with Dr Golfinos after I met with him in mid-August.  At that point in time, the only additional symptoms I had we're intermittent headaches and an occasional little whirring feeling in my head.

Starting not long after I saw him in August, my symptoms started to ramp up.  Lots of headaches, a few so bad I had shooting pains in my head when I moved.  I now feel lightheaded and spacey all the time.  My little head whirrings (dizzy and off balance and my ringing ear makes a woosh woosh woosh sound) increased, to where now I have one every 1 to 2 minutes.  My head does a few other weird things that are hard to describe to.  My face numbness is sometimes full-on pins and needles.  Finally, this morning I was feeling so bad I called the doctor.  They are sending me for an MRI tomorrow.

So I guess I am wondering if anyone has had a pretty rapid worsening of symptoms.  Did it mean anything? 

Has anyone had what I describe as "whirring", with the woosh sound in the ear?

Also, I feel exhausted all the time.  Anyone had this?

Thanks for any comments!!

[Crazycat]

I've been there and back again. Get it taken care of ASAP. Read my reply under the above Mark Ruffalo Video Thread.

About the symptoms worsening quickly, yes it did happen to me. I had been experiencing increasing deafness on my left-side for years along with lightheadedness and double vision, but continued on. I complained a great deal about it and asked a lot of questions. At one point I thought I had M.S.  Toward the end came sudden catastrophic equilibrium failure and deathly fatigue. It got to the point where I couldn't go on any longer. My tumor was 5cm x 5cm (golfball), compounded by hydrocephalus, which can happen when the thing grows to such proportions it blocks a ventricle and backs up fluid.

Good luck with your treatment!

[CHD63]

Hi Kbthor and welcome to this forum .....

If I interpreted your post correctly, you were to have another MRI yesterday.  So glad ..... and I hope you have some answers now.

Do you already have an otolaryngologist and/or neurosurgeon?

ANs can have very erratic growth spurts/slow growth/no growth.  It is so important to listen to your body/symptoms and act accordingly.

Let us know what you found out yesterday.

Thoughts and prayers.

Clarice

[Echo]

I was diagnosed May 2012 with a 1.8cm AN and can honestly tell you my symptoms changed throughout the past year.  Balance issues pretty much never go away, but I have had numbness on the tip of my tongue and the corner of my mouth that has come and gone frequently.  Over the past year my AN grew to 2.4cm and I did notice changes in my symptoms, not drastic but I was aware of different things happening.  If you look at some of my previous posts you'll see that I also commented on exhaustion.  That's another thing that seems to ebb and flow and it's fairly common for a lot of us here.  Try to pace yourself.  Your body is working hard to deal with the AN and I found taking time to rest whether I wanted to or not has been a big help.

Cathie.

[Chances3]

Hi Kbthor,

Welcome to this wonderful forum.  Very sorry to hear about your AN, along with the problems you are experiencing.  I had a small tumor removed three years ago.  I did have some of your symptoms after surgery - for me it might have been caused by messing with all those nerves.

AN are slow growing tumors, but it could be that in the past year of getting diagnosed, your tumor grew enough to cause these symptoms.  Hopefully the surgery will solve all of this.  As an FYI, I was operated on by Dr. Golfinos and Dr. Roland, you are have selected excellent surgeons.

Continue to post, and keep the AN Community up to date on your pre and post surgical progress.