Hello and welcome Heidi ~
I sincerely hope you find the time to read this message.
I'm sorry to learn of your manifold problems and difficulty obtaining a firm AN diagnosis but now that you have it that should be a small relief. I'll reiterate what others have stated, because its important: an acoustic neuroma is almost always non-malignant (not cancerous) and doesn't 'migrate' to other parts of your body. It is eminently treatable, either with microsurgery or irradiation - or sometimes, both. The mortality rate during AN removal surgery is almost infinitesimal. You can look it up.
You asked why some of us choose surgery. In my case, my AN was too big for radiation and was pressing hard on my brainstem, making it ineligible for radiation. However, my neurosurgeon presented me with a plan to, first, perform a partial resection of the tumor, cutting off it's blood supply and rendering it small enough for radiation. That went very well (no complications) and the radiation (FRS) treatments seem to have been successful, too. Again, no real complication from either procedure. That is not always the case, so I consider myself blessed.
Your anxiety is quite common and understandable. Everyone handles this diagnosis differently. I believe it helps to research (as others have suggested) and try to gain some sense of control over the situation. Having very young children to care for makes that difficult, I know, but it's imperative that you get out in front of this or the anxiety will likely remain and probably intensify. You definitely should consider having more doctor consults to give you a better perspective on your AN as well as to find what, if any, options may be available to you and if surgery within the next month is really necessary. I'm not a doctor and can't advise you on strict medical issues, but consulting radiation oncologists as well as neurosurgeons will give you the information you need. Seeing one doctor who schedules surgery within 30 days and leaves you no options (while he leaves town) is grounds for anxiety, but your taking control of your AN situation will certainly help alleviate that to some extent. Remember, this is your body and you'll have to deal with the consequences of the surgery. Don't be pushed into anything.
My symptoms were a slow-but-sure loss of hearing in one ear (my left), increasing loss of equilibrium, sudden loss of taste (with a subsequent 30+ pound weight loss) and sharp, intermittent 'shooting' pains on the left side of my skull (the 'AN side'). When an MRI scan 'discovered' the tumor my AN was 4.5 cm and my doctor thought it may have been growing for 10 to 15 years. That is quite possible. Acoustic neuromas are notoriously slow-growing but because of their location - on and around cranial nerves - troublesome, to put it mildly.
It's clear (from your post) that you experienced the kind of mis-diagnosis that is, unfortunately, all too common with AN patients. The optical neurologist at OSU who blamed your 'German ancestry' for your eye problems is beyond ridiculous. Sometimes you simply have to wonder how this kind of person ever got through medical school. This is why we always advise AN patients to research and be pro-active with their AN issues as well as their general health. If you do end up having the surgery, your helpful husband will be a true asset to you. The fact that you consider him good looking is a bonus!
Six weeks is the general time-frame for post-surgery AN patients to recover enough to resume their normal activities but total healing can take a year or more. Balance exercises and lots of rest usually do much to help the post-op AN patient regain their equilibrium and their strength, assuming there are no major complications resulting from the surgery.
Again, Heidi, I trust this lengthy message is not only read by you (I know your 'free time' must be limited) but proves useful in some way. We're here when you need us. Please consider this website and these forums as a resource. We not only welcome you (regretting that you have an acoustic neuroma) but want to help in any way we can. We're a basically congenial bunch and come from all over (including overseas) and every part of the U.S., from all walks of life and all ages. Every race and creed is represented here at one time or another. We don't discriminate on any level and we all share a common bond - an acoustic neuroma diagnosis. We just want to advise, help and support you however we can. Don't be shy about asking.
Jim
