New here

[MAlegant]

Hi Donna,
Belated welcome to the "club".  You will find it to be a wonderful place.  Hope you can find some calm; I did once I made a surgery decision.  Keep posting!
Marci

[Donna R]

Well, I had my second MRI this month, and it showed no growth.  Yes, I do want to talk to my family doctor about everything...I thought if I am going to have the surgery, which I am leaning towards that..I wanted to schedule it for this summer while my kids are out of school, so I will definately make a decision after my appointment with the other doctor who does the surgery with my doctor, that appointment is in April.

Yes, it is very scary, and it is so nice to know that this great forum is here.

[moe]

Hi Donna,
Welcome to the forum. 
There is great comfort here.
Glad to see that your AN size did not increase.  Shouldn't be a problem to wait until the summer.
One doctor appt at a time. Remember it is slow growing and benign. Though you may experience some weird symptoms and think "OMG it is getting bigger."
Yea, maybe it is getting 1/2 of a mm bigger(that's really really small), because it is against the NERVE. So hang in there with the symptoms.
Maureen

[Donna R]

Hi...I was wondering, has anyone had any issues with balance after surgery who had no issues with it before? I don't have any problems now with balance, and I am wondering if I will after the surgery. ...the only thing I deal with now is very dry mouth and the "burnt toungue" feeling and lack of hearing in one ear....I'm certainly not counting on getting any hearing back, but has anyone gotten their normal taste back after?

Thanks to everyone for thier thoughtful posts.

Donna

[EJTampa]

Hi...I was wondering, has anyone had any issues with balance after surgery who had no issues with it before? I don't have any problems now with balance, and I am wondering if I will after the surgery.
Donna

Hi Donna.
 
I can chime in on this one.  I had no balance issues prior to surgery.  My testing showed that the tumor had almost no impact on my vestibular nerve.  Right after surgery, I was plagued by some double vision and lots of light headedness.  Now, coming up on 4 weeks post-op, I can tell you that I still get light headed when turning my head, especially to the right.  I have some difficulty tracking with my eyes when turning my head to the right, but I do well turning to the left.  I get really light headed when I move my head up and down, but luckily that isn't necessary very often. 
 
As far as balance goes, it's been getting better if I'm in a well lit area.  I haven't stepped off any curbs lately, and have never actually fallen.  I find the balance problems more of an issue at night than during the day, like when getting up to use the bathroom.  I initially have to steady myself by holding on the the foot board of the bed.  I haven't noticed much improvement in that, but it is easy enough to live with.
 
I have started to drive short distances, but it's still a challenge when trying to pull out into traffic (looking quickly left and right).  Overall, it's a small price to pay to be rid of the tumor.  I consider myself 90 percent of normal now, and that's not bad for less than a month out of surgery.
 
I never needed a cane or walker, but some people do.  Everyone is different, so nobody can tell you how your balance will be after surgery.
 
Ernie

[Jim Scott]

Donna ~

Unfortunately, an AN patient with almost any vestibular function prior to surgery will have balance deficits after surgery due to the cutting of the vestibular nerve.  In many cases, vestibular rehabilitation may be beneficial.   My balance nerve had been so severely compromised by the growing tumor that my brain had compensated for the change in input and, although my balance was negatively affected prior to my surgery, I regained most of my normal balance functions within six months of the surgery.  To be honest, that took some work on my part.   

I experienced a rather severe loss of taste prior to my surgery and lost 30+ pounds within 6 months, mostly due to not eating enough.  Fortunately, my sense of taste returned almost immediately after the surgery.  ...the weight didn't.  Let me add the necessary caveat that every AN patient is unique.  Although we all have similar symptoms (for better or worse) each AN post-op patient will have a slightly different experience with their surgery and recovery.  I trust that yours will be positive, no matter the approach you ultimately choose to address your AN.

Jim  

[Donna R]

Thanks so much for your posts, you have been very helpful!

--Donna

[Nicole12]

You are lucky to live near Philly to have available to you a radiosurgery center to offer therapy that would not result in the sometimes, disfiguring consequences of invasive surgery.  Here is the information from the ana.org website.  Certainly worth a second opinion!

Dr. David Andrews, Assoc. Professor of Neurosurgery at Thomas Jefferson University, and Director of Stereotactic Radiosurgery at Jefferson Hospital for the Neurosciences. In 1994, Dr. Andrews established the first world installation of a head dedicated LINAC. Patients describe him as "a very sincere man honestly working to benefit his patients".  FSR is performed in 5 consecutive weeks of low dose radiation (Monday-Friday, 2 Gy per session) with a dedicated LINAC. Gamma Knife is also available. He claims to be "among the most experienced clinicians in the world in the treatment of ANs with fractionated stereotactic radiotherapy."  They have now treated 800 patients with FSR (not all of them ANs).  
Thomas Jefferson Department of Neurosurgery
909 Walnut Street Third Floor
Philadelphia PA 19107