Hello to All - This is my first experience on a message board! I found you all before Christmas this year, and have been browsing through this site. You are ALL my heroes, and I wish you all the best!! Thank you to all who share their experiences. It's truly a lifeline. To other newcomers, we all understand you! My story is like many. I was diagnosed just 3 days before Christmas '08 with a "small" AN of approx 1 cm on the Left side, and then I had to wait until mid January of '09 to see a specialist. Although it was sobering to learn, I remained pretty calm. I got through Christmas that year with only my husband knowing. I didn't have enough information to tell anyone else!
The diagnosis did answer so many questions about symptoms I have had for many years. I have had tinnitus, some balance issues, and 2 bouts with vertigo during the past 15 years. During those years I was told I needed to exercise, rest, vacation, take antidepressants, had fibromyalgia, was slightly anemic, had arthritis in my neck, scarring from childhood ear infections, should see a shrink - you name it. I used to tell ANY Dr I went to that I was a little "dizzy", had ringing in my ears, and was ALWAYS tired. Once many years ago I was sent for a basic hearing test that showed a slight loss of hearing, and that was the ENT who told me it was from childhood ear infections! He never advised further testing unless I noticed more hearing loss. I didn't really notice any change. I was busy working and raising 2 daughters, and I am also one to "keep going" as much as possible. I didn't feel sick, just "weird" sometimes.
In Oct '08 I had a balance episode that was different than before. I was bumping into walls. I was functioning, but I knew something was up. There were a couple of days when I wouldn't drive. My family physician told me to see a neurologist. She admitted later she was stumped and didn't really know if it was anything but my imagination. However, I thanked her greatly (and still do) for finally sending me to someone who thought it was worth figuring out! The neurologist told me to seek EXPERT opinions, but provided me with only 1 name. I, in fact, never saw that person. My ENT gave me a couple of local names. I live in northern NJ. I would prefer not to travel to NYC for treatment. There are a few good people in this area; but I haven't been able to make a decision.
So, before seeing any specialist I began my information search online and contacted my local association (WONDERFUL!). I was extremely educated by the time I was told by 2 specialists to "Watch and Wait", and I did that for the 2009 year. My balance had improved; though never perfect. I continued my online research and I was brave all year, gathering information and thinking that perhaps I would be lucky and never have to seek treatment. My third MRI this fall told me differently, and it has unexpected rocked my world! I had a 40% growth (to approx 1.4cm) in the second half of 2009, but only a very slight loss of hearing. My tinnitus has become worse, but I'm so used to it that it's like "white noise". I have been told by 3 specialists that I am a candidate for EITHER radiation or surgery, and I must decide for myself! HOW does one DO that? I have seen a cyberknife specialist, a neurosurgeon, 2 neurotologists, (I purposely chose the neurosurgeon and neurologists because they deal with both surgery and radiation), and even sent my MRI to Pittsburgh. Of course I knew beforehand that each specialist prefers to do his own speciialty. Only one neurologist told me he didn't believe in any form of radiation. I removed him from my list, although he came recommended and I liked him. He wanted to do only the translab approach, which, I must presume, is all he is comfortable with.
I am now completely stumped as to what is the best treatment for myself; and so far I have been told I need to make the decision myself. All say I should do this in the next couple of months. No one has ever mentioned the "position" of my tumor. I am just told I am a good candidate for either treatment. I am almost 62, in generally good health (on blood pressure and cholesterol meds and a bit overweight). I'm active, have only about a 50% hearing loss in the higher frequencies.in the AN ear. I am extremely afraid of this surgery. I have had others, but this is different. I have been told that although surgery is difficult, the results are more immediate and finite. If I were 5-10 years older, surgery would most likely not be recommended at all. I know that with either treatment, regrowth is a possibility, and even with surgery, they can't always get it all. Radiation cannot be done twice. I have been told by several other physicians that surgery is most often the first course of treatment; saving radiation for later if necessary.
I understand that the possible headaches, balance issues and facial paralysis are truly "quality of life" issuesj, and they can be worse than loss of hearing. Is one method better than another if I am so worried about all these things? I do want to stop this little monster! I AM STUMPED AND GETTING DEPRESSED! My family is losing patience, which isn't fair to me. I am pretty outwardly brave, and so I don't think they are seeing this as so serious. I don't want to seek radiation just because it's easier if it's not the better way to go. I am also scared to death of the out-of-pocket expense we may incur. We have insurance, but the coverage gets a little worse each year. Doctors always say "oh, don't let the expense influence your choice". Well, I wonder if I can ask THEM not to worry about the expense when it's time to pay the bill??? I don't want to spend our retirement savings on this. What a heartbreak that would be!
Does anyone have any suggestions for me? See more doctors? Names of anyone else in my area? Send my MRI to the House Clinic? Maybe I know too much! I just want it all - the least amount of hearing loss, NO facial nerve issues, balance no WORSE than I live with now - and I can't seem to sort out which procedure offers me the best chances. I thought I asked the doctors all the right questions, but I have dozens more every day! How much can I pick their minds before they are annoyed? These specialists DO have egos, but not in a bad way. I do like the doctors I have seen. Sorry to be so long-winded! Thanks for reading this- Kathy