Hi, Cynthia-in-New Zealand:
Haere mai! Welcome to the forum, but please accept my regret that you have a reason to be here: a diagnosis of an Acoustic Neuroma (aka
vestibular schwannoma).
Your initial reactions are quite typical; grateful that the tumor is benign but fearful of what it will cost you (physically) to remove it and what the future will be like. We've all been there. Because you seem to have the medical aspects (doctors, surgery date and facility) nailed down and are comfortable with all that, my first (unoriginal) suggestion is that If you have the slightest leanings toward the religious and/or spiritual, this is the time to engage them. I had dozens of good folks around the U.S. praying for me as well as almost everyone in our church. This was a great comfort to me. I also believe it played a big part in my successful surgery and subsequent radiation treatment. However, religious/spiritual beliefs are a personal matter that I'll leave to you to address as you see fit.
You’ve received much good advice here. Peruse the entire website to find even more. The N.Z. AN group will very likely send you detailed patient information, too. Your doctor's warnings about hearing loss can be explained by the fact that the tumor grows from the sheathing of the 8th cranial nerve, which is part of the hearing nerve branch that enables our brain to receive and process what our ears hear. Although Acoustic Neuromas are notoriously slow growing, it
is possible for one to have a ‘growth spurt’ and suddenly grow much larger (and more problematic for the surgeon) in a brief period of time. This has happened to some of the folks posting on this board. Admittedly, this is a long-shot, but your doctor was simply being honest and ethical in stating the
possibility of this occurring.
Your question regarding the symptoms worsening prior to surgery is logical. The answer is: yes, this happens. There is little one can do about it other than to move up the surgery date, if possible. Because your surgery date is only about 3 weeks away, I doubt that is an option or, frankly, anything you need to worry about. Cynthia, I think you should be fully aware that, depending on the exact location of the tumor, how much nerve involvement is present and the type of surgery performed (there are 3 distinct approaches- some sever the 8th cranial nerve and hearing in the AN-affected ear is permanently lost). Unfortunately, unilateral (one-sided) hearing loss is a prime effect of an Acoustic Neuroma, as is tinnitus. Even so, unilateral hearing loss associated with an Acoustic Neuroma is not always a given nor is it necessarily total or permanent, but these are questions you should be asking your doctor, as he is familiar with your specific case and can answer you with credibility. Please be assured there is no reason the hearing in your unaffected ear should be diminished because of the surgery or the AN that is affecting your
other ear. Of course, the surgeons experience and skill is a crucial factor in a successful outcome to AN surgery. I'll assume your chosen doctors have that experience and skill.
Eat healthy, get plenty of rest and otherwise, just enjoy your life, pre-surgery. You’ll very likely be walking, doing Yoga and so on within a few weeks of your operation. Although the first 48 hours following the operation will find you in an ICU, groggy and sleeping most of the time. A combination of the trauma to your body resulting from the surgery and the lingering effects of the anesthesia. This is not a surgery that automatically leaves you incapacitated or unable to function normally. Well, not for long, anyway. Although recovery times can vary widely, six weeks seems to be the norm. Some AN surgical patients 'bounce back' sooner, some have lingering issues for months afterward. There are simply no guarantees. How I wish there were! The other issue you raised (
menstruation) is one you may wish to mention to your doctor, just to keep him fully informed. If it’s any comfort, I was 63 when I had my AN surgery. I was underweight (due to appetite loss) but otherwise healthy. I came though it and the radiation treatments I underwent 3 months later, just fine. Now, 2 years post-op, I’m probably about as close to normal as I’ll ever be and that is about 95%. I have SSD (Single Sided Deafness) but it is only a minor handicap. I've long since learned to adapt to it and it's invisible to others. My balance is good and I have only the tiniest lingering effects from the AN (occasional 'dry eye'- easily rectified with OTC eye drops, a tiny 'numb' spot on the side of my tongue). None really impact my life. Oh, and I never experienced facial paralysis. I trust you’ll have a similar overall experience.
We stand ready to be of whatever service we can, Cynthia. Please use this site and this forum as a resource as you begin your journey toward wellness.
Kia ora to you.
Jim