sarah:
I mean no offense to you or anyone else, but, to the best of my knowledge, (I could be mistaken) no one posting on this message board is a physician, much less, a neurosurgeon with extensive experience recognizing and treating Acoustic Neuromas. We are all patients - or former patients - and as such, we have much useful information we can share as well as offering 'newbies' the kind of support and understanding that comes with our often hard-won personal experiences dealing with an Acoustic Neuroma, both pre and post-op. However, ethically, we cannot diagnose each other. That being the case, I wouldn't dream of advising you as to what your symptoms may indicate. I can only tell you what I have learned from physicians...that AN's can and often do stop and start their growth pattern and can lie near-dormant for many years. My neurosurgeon told me that my large AN tumor (4.5cm) may have 'been in there for 15 years or more' before it finally grew large enough to disturb the nerves that caused the symptoms that drove me a doctor's office and having the MRI that helped him 'discover' my tumor.
I would strongly suggest that you or anyone else who suspects they may have a small but growing AN tumor not only insist on an MRI brainscan but seek out a physician that listens to you and will address your concerns, even if only to tell you that you do NOT have an Acoustic Neuroma tumor, which I always hope is the case in this kind of situation. I won't tolerate a doctor that ignores my concerns or brushes off my questions. I don't expect my doctor to be my buddy but I want a physician who treats me and whatever my medical problem may be - with respect. Doctors are not gods. They do make mistakes and miss things, occasionally, or in some cases, they simply don't know what to look for - or recognize it when it presents itself, as with some AN cases.
This is your health we're talking about! There is little-to-no benefit to you in tolerating a physician - who may be pleasant enough and even competent - but who is unresponsive and/or uninformed, just because you've been going to him or her for a long time, he or she is on your insurance plan or has an office conveniently close to where you live. I drive 60 miles (round-trip) to see my neurosurgeon. My surgery was done in a hospital a somewhat inconvenient 30+ miles from my home. However, the neurosurgeon I had is highly experienced in AN surgery (he did a great job) and the hospital is first-rate. You do whatever you have to do when your health is at stake. I did.
I can tell you now that support groups and message boards will have a lot of 'horror stories' - people who have had poor results from surgery - who just want and need to vent. They may be a minority but they are highly represented in support groups. I understand that and can respect their need for support. My brave and beautiful wife, Tina, has suffered with Fibromyalgia for well over 10 years,. She used to have doctors tell her her pain was "all in her head". It was tough when one physician, in effect, told her she was 'imagining'' her pain because "nothing showed up" on CAT--scans or X-Ray films. Of course, she dropped that doctor, fast. No loss. My wife also used to be very active in a local Fibromyalgia support group but she quickly found that most of the members just came to complain ("you think THAT'S bad, wait until I tell you about MY pain!) and as she is a positive person who has come to grips with her disability (she has had major spine surgery, also) she felt that she wasn't getting anything from the meetings and no one seemed very interested in hearing anything about how she was successfully coping with her Fibromyalgia. This board is far better than that - but you will read a lot of rather sad stories, as well as see a lot of sincere sympathy, empathy and heart-felt encouragement, as well as some darn good advice! If you eventully are medically diagnosed with an Acoustic Neuroma, just remember that we're individuals and - especially with this particular condition - what happens to one person may not mean the same thing will happen to you. I always advise AN-diagnosed 'newbies' to choose your neurosurgeon very carefully...look for extensive 'AN experience', not a 'newbe - ' or a neurosurgeon that knows more about performing spine surgery than brain surgery.
I'm over 2 months post-op and almost back to where I was, physically, before my AN symptoms took over my life, yet I still visit this website almost daily and I still occasionally post here. I do so mostly to encourage others, offer my support and to let 'newbies' know that being diagnosed with an Acoustic Neuroma tumor is not automatically 'the end of the world', as many seem to believe. It's a minefield, for certain, but some of us make it through O.K., although no one comes through without a struggle. Hey: it's a brain tumor!
I trust that your symptoms and MRI scan(s) will not indicate an Acoustic Neuroma tumor - but only a physician is competent to make that diagnosis. Find one with experience with this specific type of tumor (preferably, a neurosurgeon) and let him or her read your MRI and evaluate your ongoing ear symptoms.
I wish you well.
Jim
