FACIAL neuroma, now bigger, 2 yrs post-op

[neuroma_racer]

well, i hadn't planned being back here quite so soon. . .
but i am.

to recap:
i had a ~4x5x7mm neuroma found 12/2009, still with excellent hearing on that side
underwent craniotomy 4/2010, with a HEI trained neuro-otologist, to try to preserve that hearing
turned out to be a FACIAL neuroma, instead of an acoustic/vestibular neuroma
so they de-bulked it somewhat, and closed me up.

upsides were: no detectable facial palsy, no worsening of mild hearing loss, no vertigo, no learning to walk again, no puking, and i was back on the race track in 3 weeks,
downside: its still in there,

at my ~august post op, he said to see him again in September 2011 (18 months) with a new MRI/audiology.

being on a high deductible/healthcare savings account, and not having had much healthcare costs in 2011, . . .
i felt it would be fine to push back a few months, and do it in early 2012, when that expenditure would be at the BEGINING of an insurance year, (instead of the end).

about 3-4 weeks ago, my hearing on the affected side seemed to take major dump,
so i got MRI'd today, and have audiology tomorrow, with a recheck Wednesday.

it has grown quite a bit.
now measuring 8x8x15mm,
it has QUADRUPLED in volume in just 25 months.

still no vertigo   
still no facial droop 

hearing issues on next post 

[neuroma_racer]

so it took a while for me to realize what was happening,
but i found myself getting really tense at restaurants, and in other loud situations,
then it finally dawned on me,
my hearing had changed on the affected side.

it was like i had three audio streams coming in on different channels at once:
1) the loud, constant din of the restaurant and other patrons' conversations (mainly in the neuroma ear)
2) music from the bar, or big screen tv (mainly in the good ear)
3) conversation at our table (well in the other ear, poorly in the affected ear)

while i didn't have a panic attack, heart didn't race, wasn't sweating from it, . . .
it was nevertheless very unsettling,
MORESO, until it dawned on me why i was so uptight
LESS SO when i realized it was an actual change in my hearing
and less mysterious yet, now that i see the cause

i can adjust to, learn to cope with, get used to - the hearing changes, especially now that i better understand the what/why of it.
BUT CERTAINLY WELCOME ANYONES INPUT AS TO SIMILARITIES OF THEIR EXPERIENCES.

IT SEEMS TO ME LIKE IT IS THE DISCREPANCY OF THE TWO EAR'S ACUITY, THAT IS CAUSING THE ANXIETY/UNSETTLEDNESS.

i tried putting a foam earplug in the bad ear, which didn't help.
but it was at a lower key restaurant
i need to try an earplug in the good ear to equalize things, and see if that helps.

no headaches 
nothing else seen on the MRI 

this thing is now deforming the internal auditory canal, and bulging out of it.
my guess is he will say the time for the next craniotomy is either:
a) when there is a significant facial palsy (greater than the anticipated post-repair palsy)
b) frequent debilitating vertigo
c) grows big enough that it is pressing on something else.

hearing preservation (on the affected side) is essentially a goner, now

all i can think of for now

[nftwoed]

Hello;

  Well, it would seem no matter your current condition, the AN needs to stop growing.
  I can only say what I'd do if it were my circumstances, I'd hike up the road to Stanford and receive opinion by either Dr Adler, or Chang for CK.
  The facial nerve is resilient, as is a motor nerve, so can overcome a temporary weakness if you should suffer one.
  Radiation often follows surgery and vice versa for salvage Txs.
  I'm sorry to read of your hearing loss. Are you then totally deaf to any tone at all?
  If you can hear something, getting the pressure off the auditory nerve may allow an improvement. That is not to give you false hope, however.
  Maybe the regrown AN is just stretching and flattening the auditory nerve against the IAC? The nerve could still be intact if the surgeon didn't damage it. With single ANs, the nerves are always displaced to the tumor surface. Not so, given NF-2.
  Best wishes, n_r.

[neuroma_racer]

well,
i saw dr mcelveen, my surgeon, today

to my surprise, he is recommending a low dose radiotherapy treatment to try and stun it, to quit growing.

there is a gamma knife 90" away in columbia, and i have a tuesday appointment with dr dial there to look at films. (decade and  a half experience ) (not far )
there is a novalis brainlab thing here IN town (nearby ) (shaped beam ) [my tumor is now kinda irregular shaped] (less accurate/precise?? ) (uncertain amount of experience )
dr mcelveen is starting collaboration with a dr. buckman in chappel hill (?cyber knife?) and they will look at my films next week. (not TOO far away ) (uncertain amount of experience )

having already had surgery, and the boney roof of the canal removed, will necessitate less radiation, and he is going for a surpressing-effect dose, rather than a normal obliterative dose
(this IS my FACIAL nerve, after-all)

so now i am looking at the three modalities as i try to choose a flavor,

as i suspected only indication for repeat craniotomy would be a grade IV palsy, since a grade III is about the best one can expect post-op.

[geexploitation]

I'm sorry to hear that you're having issues so soon after surgery. I can understand how anxiety-provoking the hearing thing must be. I hope you can get some good treatment for this and come out the other side with no more hearing loss.

The fact that your neuroma was facial piqued my interest, since I've got something that looks like an AN but in my opinion (and some other people's) is probably something else, such as a facial neuroma.

I'd be happy to offer some opinions and help if you want it. I'm not sure how best to do that, but I'll offer a couple of thoughts here and you can respond or email me privately afterward, if you want to:

--I'm glad your surgeon is talking about radiating your tumor AND about doing it with a low dosage. However, there are many different ways of doing this. Personally, the treatment that intrigues me is called "fractionated" radiotherapy. This involves giving the tumor repeated, very low doses of radiation over time, with the intent of being gentle on the tissues surrounding the tumor. I can't tell from your post what radiation schedule your surgeon is talking about.

--If you haven't done so already, it may make sense to get a second opinion on the type of radiation treatment. There are many places to do this, but I've been impressed with the work done by the people at Jefferson in Philadelphia. They have a listing on the ANA website if you're interested in reaching out to them:
http://www.anausa.org/index.php/medical-resources/medical-center-directory/jeffersons-multidisciplinary

--Whatever you do, I would suggest getting a post-surgery MRI 6 months after the surgery, cost be damned. I'm not a doctor, but it seems to me that getting a picture of the tumor sooner would be better than waiting. (And I understand why you had to wait -- I'm not second guessing, only advocating a future course of action.)

Anyway, I'd be happy to talk more if you want -- feel free to get in touch.

[nftwoed]

Hello;

  Re, your facial nerve AN and decompression surgery, I believe if you choose GK, that will offer less overall radiation units in "grays" than a Linear Accelerator and CK in more than one session.
  Of course, with CK, the one session will deliver all the the dose in a single Tx session.
  Sounds like a toss up to me. Maybe best to go with the provider with the most experience?
  I think you'll receive mixed professional opinion on the Tx types and may have to go with your instinct.

[beckyandsteve]

I know this topic is pretty old but I'm brand new to the board and I was wondering if there have been any new developments with your facial neuroma? I also have the extremely rare facial neuroma and have gone through almost exactly the same situation as you with surgery for what was thought to be an acoustic neuroma and now having my Dr suggest the wait and see approach.  Being only 33 at the time of discovery I'd like to explore all my options.  My current Dr is totally against the Gamma Knife procedure but I feel I have to collect all the information I can.