decision

the doctor:

the doctor i went to see is the head of the dept at UCSF and one of the leading experts

he has a big database to draw from and his own reputation to look out for and a particular interest in my case because it appears that dvora and i will make it into the annals of acoustic neruoma history as one of eight or nine in the world of familial unilateral neuromas--usually familial --as in hereditary, chromosome 22 neuromas, are bilateral

big picture:

my little tumorette is just shy of 2 cm but already i am having an odd constellation of symptoms. Dr J recommends surgery within 6 months

pros and cons anyway you look at it but i think he's not far off especially given the approach he's recommending (middle fossa) which gives me about a 40-50% chance of preserving my functioning at present levels--which would be my goal; no further losses

1. studies suggest that wait and see results in ongoing losses especially of hearing

the dangers here have to do with the tumor occupying space in a place where there is not much extra space to occupy and so damage is done by way of crushing of the brain and cranial nerves which DO NOT take kindly to crowding, especially in this case

the cochlear (hearing) part and vestibular (balance, sense of self in space up down) part of the 8th cranial nerve and the sensory and motor part of the facial nerve (opening and closing eye lids tearing blinking smiling, eyeball and facial sensation)

left to its own devices, if it gets big enough, it finally interferes with basic life sustaining functions, age here is a factor, and i am young enough so that it has time enough to get big enough to...

2. studies suggest there have been cases of malignancy secondary to the radiation in an otherwise non malignant tumor and though this slows the growth down in the short run and mitigates the need for brain surgery as in BRAIN SURGERY it is a timebomb with all sorts of side effects down the line, not to mention steroids, (not to mentional a menopausal woman on steroids...!)

ain't this just a pisser

so...it seems odd to be talking so reasonably about this

and for certain i have my moments, usually in the middle of the night, that are all about the what ifs death destruction chaos which isn't as bad as the quiet anxieties about what if all the worst happens and i don't get back as good (as in well) as i am

and the rest of the time i realize it is going to be hard and i am ornery and i will prevail

oy, anticipating, thinking about, brain surgery is a bit unnerving (ha)

but i've been mulling it over now for a fair bit and though i started from hell no and then went to it will be okay if i do radiosurgery i've eased up into microsurgery and from all the bad choices it seems the best--yikes--lends a whole new meaning to trust,

understanding narcissim the way i do (borderlines are such good teachers, aren't they) the good thing is because this guy is such topshit he's even more worried about his reputation than the outcome of my particular piece of the pie, so that's good

middle of the night i'm scared shitless and perseverate on all the what ifs and when that gets overwhelming i get up and read, otherwise diddling in details has been comforting and then there's the rest of everything that used to be important and earth shattering and i take refuge in that

all in all actually i'm okay and much less scared of other things that used to scare me, like mean people for instance

jude

Picking this up late at night, but I wanted to say I recieved it and spent the last half hour reading the docs on the medical web pages. These give a pretty good picture of it; certainly I understand the medical view a bit more. Is it entirely clear to you that you have what is described there?

B's first response was delay, and her second was not radiation. I suppose these are the logical first responses. The inner responses though, are more personal...angry, determined. Sounds like that is par for the course. The overall numbers regarding various recoveries seem, well, less than perfect, better than miserable. As DW once noted, once you are there its not 70% of anything. For you it's 100% one way or another.

My friend R had some brain inflammation last year and has had to take some time off, nearly losing her language and coordination at one point. Sounds like, on the average, this is less severe than that, but there would still be the time lost to anaesthesia, headaches and generally felling violated and unwilling to contribute to the world for awhile.

Sounds like you should chose your season to be less outgoing?

Altogether nervous making.

Well I'm out of thoughts for the moment.

love G

my first response was get me the hell out of here

my second response was not surgery

my third response was radiation must be better than surgery

my fourth response was why

and then reality prevailed

i'd love to wait, but truth be told there's nothing to wait for and

radiation is just dumb and in the long run does nothing

and i'm counting on the long run

jude

by the way, the damn thing looks quacks and walk like a duck, but paul asked the same question

Have been mulling over your letter. Statistics are a helluva thing aren't they. Knowledge is power and all that, but once they apply to us, or someone we love, well then...

I guess one quesiton in my mind is what problems are you having? Are they confined to hearing loss? I am guessing not, but better not to guess.

It seems to me that you are on the right track and the real power is already there and so are you, especially in the middle of the night.

Love J

so many thoughts, knowledge is power, but more i've come to discover these days access is power, gaining entry is power...thankfully i've had good teachers and i march blithely ahead it never dawning on me i have no right to be where i'm going...born from so many things

and how helpful these conversations about this have been in ferreting out what i inow, what i've decided, what i've learned and of course lighting my path, so thanks

ironic

the whole thing, really i was doing research for dvora as she was going through her second round of going to the neurologist, and seemed more concerned than before, and i thought she would have questions that i didn't know the answer to, and the more reading i did, especially one of the lists of symptom progressions struck home, as in eeeeekkkkk on the one hand and omigod on the other--symptoms what a bore, oh well--

started with vertigo about 18 months ago--me being me i must say, a fascinating phemonenon, not dizzy as in a vascular sense--like not enough blood pressure so you feel light headed--but a spatial thing, a disturbance of spatial awareness, of knowing where your body is in space and it don't make a shit of a difference if your eyes are open or closed the sense of ground tilts or twirls; has to do with proprioception--anyway that stopped in its unremitting sense and moved on to a more ongoing more generalized balance problem--disequilibrium--i have no faith in edges, no faith in not falling of cliffs or narrow pathways stairs without rails--this is about the 8th cranial nerve which mediates balance (freddy--but not as prounounced, not as big not as pervasive or noticeable to you if you watched me--yet, if you saw me walk down the road you would wonder why i was having such a hardtime walking a straight line--freddy's stumbling is because of his cerebellar stuff which i do not have but would have if i let this little tumorette grow)

and hearing loss of course

short version is i can't use the phone on that ear, don't always hear the alarm clock with that ear and like that the vaccuum in the bandwidth i can't hear is filled with an eternal ringing which is sometimes really, as in REALLY, annoying but that's the way it is so i don't trip, this ringing stuff has been going on abouat 6 months or so, and then, earlier than might be expected my cornea (6th cranial nerve) is not as sensitive as it should be, so if you stick your finger in my eye i don't blink which can lead to all sorts of potential problems--so

the flood keeps popping into my mind, the first one, when it rained and was still raining when it flooded and the second one which by the time the water rose happened in the midst of a beautiful sunny spring day, you know the cues were all wrong

so, it started to make it easier to thing about doing something when i realized that things are going awry and doing nothing is not free

at first my thoughts circled around why would i do anything if the intervention would be worse, leave me in worse condition, why not wait unitl the before and after would be the same and, what he said was i can give you some chance at preserving the current state of affairs and bottom line is, given 25-30 more years of living there is no way that it would not get big enough to become life threatening because it would ultimately put pressure on the brain stem, never mind the suff that happens first

anyway if there is some chance, it seems better than none

how elegant that is!

so at least for now, i'm thinking surgery, mid may with about 3 months recuperation and relearning about my body in space i'm thinking it will be really hard and that that's life

i'm thinking lots of other stuff(!) but that's it for now

jude

actually not so far off

i will do some accupuncture to balance my yin and yang get my chi flowing in a balanced way, i am doing visualizing and reiki and getting everyone who is willing to participate in lending support

and i am exercising, as in EXERCISING to prepare for what looks like will be at least an 8 hour surgery, my frigging back shouldn't go out while i'm lying inert on the gd table--