Hi, and welcome, Danielle ~
I'm sorry you've been diagnosed with an acoustic neuroma but pleased that you took the initiative to search for answers on the internet, found the ANA website, then took the time and made the effort to register, read and post here. That kind of pro-active attitude will serve you well.
Your concerns are typical and valid. Although you don't yet have a lot of details, you've been correctly informed that the AN (tumor) is benign (non-malignant) and can be addressed. Depending on the exact size and location of the AN, you'll have three to four possible options: surgery, radiation, surgery and radiation (as I had) or observation, known around here as 'watch-and-wait'. The last option - 'watch-and-wait' - comes into play if the AN is very small and your symptoms are few and/or infrequent. This approach consists of annual (or semi-annual) MRI scans to observe the tumor to see if it shows signs of growth. Some do not. If so, you do nothing. However, should the MRI scans indicate tumor growth, you'll have to decide on a treatment at that point. Radiation is a viable option for tumors under 3 cm and not pressing the brain stem. Surgery is always an option and, as it was in my case, the only one available due to the (large) size of my AN. However, some doctors will, as mine did, recommend a partial resection of the tumor to deprive it of it's blood supply and, in effect, 'hollow it out'. This is usually called 'de-bulking'. In my case, it was followed (90 days later) with FSR (fractionated stereotactic radiosurgery) which is easier on surrounding brain tissue and, again, in my case, quite effective with minimal-to-no real complications of any kind. Today, four years later, I'm doing great and back to my normal routine. I can assure you that many other AN patients have similar experiences.
In summation, you have a relatively rare condition (1 out of every 100,000 people a year are diagnosed with an acoustic neuroma, technically referred to by doctors as a vestibular schwannoma ) that can be addressed by medical professionals. As my neurosurgeon explained it: the tumor isn't really all that threatening, it's the location (inside the cranial cavity) that makes it problematic. If surgery is indicated (or preferred), finding a doctor that has extensive experience in AN removals is critical. If irradiation is chosen to treat the tumor, the radiation oncologist also should have experience treating acoustic neuromas. Again, to quote my neurosurgeon, "when I'm doing AN surgery, the OR is no place for amateurs". He was explaining why he would only have a hand-selected team in his OR for AN surgeries, no Residents or Interns, except to observe.
Although an acoustic neuroma diagnosis is not, in itself, something to be frightened about, it is something you need to take seriously. As others have mentioned in their posts, AN patients seem to have a wide variety of experiences with surgery and/or radiation. The majority do well but there are always some minor re-adjustments to make, afterward. Frankly, like your neck surgery (my wife had similar surgery in 2002, so I understand the situation) this is an extensive and somewhat complicated surgery that runs around 5 - 10 hours, depending on the patient's AN size and location. Thankfully, the mortality rate for AN surgery is infinitesimal but there can be ramifications from radiation or surgery, some of which you'll undoubtedly read in these forums. It's prudent to be aware of this but it would be counter-productive to dwell on the negative and allow the 'what-if's' to dominate your thinking or affect your attitude as you prepare to deal with your AN.
I trust that you'll remain positive and continue your research as you prepare to continue your 'AN journey'. I hope these forums can serve as a resource for you. Although we're not doctors, our members have much practical 'real-world' experience that they're eager to share with you. Just ask.
Jim
