Just signed on to this site this evening. In reading much of what is on here, I am finding that many of my issues are similar to many posted here. This saddens me as I was hopeful these things would eventually go away. My balance is better than last year at this time, as I am no longer falling all the time. The headaches, vertigo and tennitus are still quite severe and sometimes dibilitaing. The hearing loss, although quite annoying, especially to my family who have to repeat everything to me, is minor compared to the other issues. I live at a high altitude, and in the winter the barametric pressure changes and cloudy/stormy weather just about killed me last year. Now that the AN has put me out of a 15 yr Real Estate career, we are more dependant on my spouses income and therefore not currently in a position to move "off the mountain" to a lower elevation. I know that won't "cure" my problems but I do believe it would make me more comfortable, so hopefully we can relocate in the not so far of future.
In reading this site it appears that many are on various drugs. My docs attempted tp put me on various anti depressents, and anti seziur meds. I tried a few over a 5 month period, only to feel worse. With the vertigo, etc, I already feel "altered" The last thing I need is a drug to make me even more altered, so I quit all drugs. I have found that one advit and one tylenol together seem to do well on some of my moderate headaches. The really bad ones in the morning I take excederine and it really helps. It has caffine in it so it gets to work fast, but can't take it at night. Caffine and theexisting imsomina (tennitus) don't go together. Sometimes it's so bad that nothing helps and I usually suffer a few days, then break down and tak 1/4 - 1/2 a perkaset left over from the surgery. Otherwise, I don't know that I want to try the drug merry-go-round again, but I could use some help sometimes.
One of the concerns I have is with a recurrance of or new tumor growth. In reading this site it appears that recurrance is more prominant thatn the docs would have you believe. When I first was diagnosed, during research and networking, I found 4 people that I know indirectly than have had AN surgery. 3 here in Utah where I live and 1 in Northern CA. The one here has had this surgery 3 times. The first was the original AN, the second was around 7-8 yrs later for a recurrant growth , and the 3rd, was actually not an AN but a miniginoma in a different part of the brain. The othe person I found in CA had his second AN surgery 7 yrs after the first. My surgeon didn't want me to have a follow up MRI until 5 yrs, but with some of the issues I am experiencing I got one 14 mo post op and it already showed "susspicious" tissue that could not be differentiated between what could be "tumor" growth and scar tissue from the surgery. I am told not to come back until 2009 becaue they grow to slow to tell.
I have managed to keep a possitive attitude through this whole thing, (not counting the really bad days, and we all have 'em) so I guess I have prepared myself for what seems to be almost enivedibal, the second go round someday. My hopes are that, since they are supposively slow growing, I can out live the second one,( I'm 47 now) When the doc tells yo that even one cell left behind could be enough for regrowth, you kind of have to "go figure"what the outcome might be.
What keeps me going is my kids that I have to finish raising, they are still quite young, and watching the news. The Tusnami had just hit directly after my surgery. As bad as I felt and as sorry for myself as I was feeling, all I had to do was turn on the news and my perspective was immediatly changed. Why, what the heck was I whinning about. So what if I couldn't hear, walk, eat, sleep, be without pain,blink my eye, see out of it, etc. I had my life and had been blessed with the promise of continuing my job raising my kids. Now that I am doing better, not without problems, but better, when I have a down day, all I have to do is turn on the news. There is always something going on that we are so fortunate we are not experiencing. And there is always someone out ther that can use our help, even if it's just a kind thought or prayer.
Does the post op BS of An surgery get better? YES, but just a little at a time, It teaches us the patience maybe we never had, and the compassion for others we should always have had.
I look forward to reading more on this site and hopefully learning more about improving my/our situation. In the meantime,
peace, love, and understanding.
Patti UT
PS anyone out there from utah?
