Hi all,
I've been lurking and learning for a couple of weeks now, and am enormously grateful this forum exists!
Here's my story: I had surgery to remove a 5 cm AN removed in 1988 in Shands Hospital in FL (the neurosurgeon was Albert Rhoton). We were living in New Mexico at the time and had an 11 month old child (I was 29). The time from shocking diagnosis to surgery (2 days after my daughter's 1st birthday!)was 3 weeks, which meant the only real decision we had to make was where in the heck we could find a surgeon I trusted to get me through 10 hours of surgery in one piece so I could go back to caring for my daughter.
I had total right sided hearing loss for several months prior to diagnosis, which had been written off by the ENTs to congenital hearing loss (I already had a severe left-sided loss since childhood, with minor loss on the right side). The only other symptom I had--and the one that tipped my family doctor off--was very sporadic, strange vertigo (when I looked over my right shoulder, most of the time the room would do flip flops for a few moments). Tumor was totally removed (except for a cell or two, it appears!), and I had no health complications whatsoever, but my facial palsy persisted for 12 months so I returned to Shands for a 7-12 anastomosis, which has done a nice job of improving my facial symmetry at rest even if it hasn't freed me of a lopsided smile! I also had a tear duct cauterization in Ohio (where we moved shortly after the surgery) to help with dry eye; I had a tarsorrhaphy done in the hospital, just a few days after the AN surgery.
The funny thing was, even though Dr Rhoton was on the ANA medical advisory board at the time (chairman or some such head honcho designation), he never even mentioned its existence! I discovered it almost by accident a few months after the anastamosis in '89, and though I never went to any symposia or support groups (because I believed my "AN experience" to be safely behind me!), I did send in an article (probably in '90 or '91) about facial reanimation using biofeedback techniques, which I'd been learning with Jackie Diehls in Madison, WI (I was one of her earlier patients--she was working at the time with a doctor whose first name was Richard and whose surname I can't remember for the life of me...) I had a few followup MRI scans--one in Ohio, 2 years after surgery, and two in Massachusetts, where we now live, in '99 and 2000). Then I sort of fell off the radar screen, because I really didn't think I'd ever have to think about growths in my head again!
Flash forward 20 years to present: I was sent for an MRI in mid February (sporadic facial neuralgia--though not horribly painful, as TGN reportedly is--on the LEFT side!), which revealed that the mass they had been interpreting as scar tissue was growing--it's apparently 1.8 cm now. And, on my daughter's 21st birthday, I found myself in Dr. Michael McKenna's office in MEEI, being told I should deal with it within the next 6 months (Dr McKenna had done my two followup MRI in 2000) . He referred me to Dr. Barker, his usual neurosurgical partner these days, but as I had already made an appt with Dr Martuza at MGH, who Dr Rhoton recommended when we contacted him in February for his advice, he said that would be fine as well. I saw Dr Martuza this past Wed; he referred me to Dr Jay Loeffler to learn more about radiosurgery before deciding what I'd like to do, and he agreed that 6 months was a reasonable time frame to act within.
The reason I am posting here, finally, is that I have NEVER been so incapable of making a decision in my life. I go back and forth between micro- and radio-surgery (which I've read about here and elsewhere on the 'net, but won't be able to pose questions about to Dr Loeffler until May 28th! Argh!), adding in the various complicating factors in my life, and basically end up blowing a cognitive fuse every time.
The complicating factors are these:
1) My mother, who was diagnosed with metastatic breast cancer in June of last year, has moved from Florida to a town in MA about 5 minutes from me (I am her only child; my father passed away several years ago). She is in a truly wonderful assisted living facility, but without my involvement (on pretty much a daily basis, often for several or more hours) it is clear she'd be in a nursing home, which would be a fate worse than death to her. Her doctors have told me that if I decide to go with microsurgery, I should do it as soon as possible, as she's been stable for a while (chemo has given her some benefit, though she's only able to tolerate a relatively small dose) and the cancer in her bones has spread to some new places. If I time this wrong, her decline and/or death could occur when I don't have the stamina to assist her as I have been doing; on the other hand, if she dies before I get the surgery done, it will be another 6 months till I can conceivably consider going AWOL for surgery (as funeral arrangements, estate settling, etc will all fall to me...), and I will be jeopardizing my own health as the AN grows bigger.
2) The initial AN was most likely a radiation-induced growth--when I began to lose my hearing as a small child (after recurrent ear infections due to an undiagnosed allergy,, of all things!), the treatment of choice happened to be sticking my wee little noggin in an Xray machine and irradiating it! (How clever...) Dr Martuza agrees there is a likely connection, especially since my MRI shows abnormalities in the bone around my ear consistent with radiation. Though he says he knows of cases where radiation-induced meningiomas have been treated with radiosurgery, I'm still a bit leery of that approach because of my history. (On the other hand, if radiosurgery is the wave of the future, and the risk, trauma, and lengthy recovery neurosurgery involve are destined to become a thing of the past, I feel awfully stupid being such a Luddite...)
3) I am positively phobic about MRIs (first one I had was half an hour before my initial surgery, to get a more precise picture than the previous CAT scan afforded, and it was probably the most terrifying experience of my life...), and have tolerated them in followup solely because I know it's just that--a followup! If I had to get MRIs regularly to track a mass that was ALWAYS in my head, I don't think I could handle the stress!
So, as you can see, I am trying to evaluate 6 of one against a half dozen of the other, and coming up with a headache and no decision every time!
I'm sorry this is so long-winded--I'm so discombobulated I can't even figure out how to cut to the chase (which, basically, is: I would love to hear about how folks--especially those with recurrences--arrived at their decisions, and if anyone can point me to research that might help me make mine, I'd be eternally grateful!)
Thanks so much...
Carrie