Hello everyone...

[Frank951]

Hello everyone:

My name is Maria and on New Year's Eve my husband went for an MRI after battling with hearing loss for over a year. He kept getting headaches but he just blamed it on what we thought were recurrent sinus infections. Well 20 minutes after leaving we received a call that he needed to see his primary doctor. Right away we knew something was wrong. An hour later my husband Francisco received a call from his ENT telling him he has a 5cm tumor on his left side and a cyst. I remember standing next to him and thinking OMG my husband is going to die. He's been pretty healthy and I can honestly say, we did not see this coming. We have an HMO and the doctor we saw said he's done 100 of these surgeries. He wants to do the retrosigmoid procedure due to it's size. We're not really comfortable with the number of surgeries he's done. In the meantime we are trying to get an approval to go to House with Dr. Slattery. It's really frustruating to say the least. Well I just wanted to introduce ourselves and to let you know that I'm so thankful for finding this forum. You are all are so nice and supportive. My husband and I read Mike's blog and it has helped alot to know that we are not alone. We are fighting day by day. Although, I'll admit there are days when it's so hard to be strong and not rage against the world. 

[Jim Scott]

Hi, Maria - and welcome to the ANA Discussion Forums.  

Of course, I wouldn't wish an acoustic neuroma on anyone and I'm sorry to learn that your husband, Frank, has received the AN diagnosis.  However, I'm glad you found this website and decided to post.  We are supportive and we understand what you and Frank are going through.  We've been there.  

By now, you probably realize that your husband isn't going to die from this.  Fortunately, these tumors are almost always benign although in a problematic location - but they are quite treatable. 5 cm is large (I had a 4.5 cm AN) but we've had AN patients with tumors as large as 8 cm that did just fine.  The 'retro' surgery is effective (I had it - with no real complications) and your attempt to go to House Ear Institute is prudent.  I hope you can swing it.  

Like your husband, I'd been healthy all my life with no real medical issues.  Yet, at age 63, I was diagnosed with a large AN.  I survived the de-bulking surgery and subsequent radiation quite well and now, as the experience grows smaller in my life's rear-view mirror, it doesn't seem all that traumatic.  However, I still recall the initial diagnosis and search for a surgeon I could feel confident with as being a challenge.  Fortunately, I found a neurosurgeon highly experienced in AN removal surgery in a nearby city and he did a splendid job.  The numerous pre-op tests were tedious but at least I found out that, for the most part, I was relatively healthy, confirming my own belief.  

I wish you and Frank a successful attempt at securing your insurance company's O.K. to go to HEI in Los Angeles and of course, we'll be here with information and advice as you need it and, above all, our full support as you venture forth on this journey back to wellness.  

Jim

[Pooter]

Maria,

Your story sounds like when I found out about my 3cm AN for the first time..  I thought I was going to die.  Luckily, I quickly realized that I wouldn't but it was serious and required fairly swift action on my part because of the placement.  I invite you to read my blog (below in my sig) and it will basically tell my story from the time just before diagnosis up until about 8 months after.  Like your husband, I had recurrent sinus infections in that year leading up to diagnosis and finally someone snapped to the fact that it might not "just" be a sinus infection and sent me to an ENT.

Welcome to the forum..

Regards,
Brian

[leapyrtwins]

Maria -

where are you from? 

While House is a great place, there are most likely other places with doctors just as qualified closer to your home.  It might also be easier to get your insurance company to pay for a doctor and facility closer to your home.

With an AN of 5 cm, debulking is the best way to go.  It's very common these days so that the docs don't get too close to the facial nerve.

Have you contacted the ANA and asked them for their literature?  It's very helpful and will answer a lot of questions you and your husband may have.

Best,

Jan

[Frank951]

Hello:

Thank you all for the warm welcome. You have no idea how much it's helped to read about your touching stories. Jim, your words truly help boost our confidence and Brian, you can be sure we will be reading your blog. Jan, we are 20 minutes from a city called Moreno Valley in California. I will be requesting the literature from ANA. Today we are scheduled to see Dr. Mesiwala in Pomona from our network. Well again, thank you.