Deterioration in balance/hearing 9mths post? Anyone have this?

[HJY]

Hi all! 

I posted this in another topic biut thought Id repost it as Im wondering whether any of you have experienced this.  If you do know of anyone please let me know - as at the moment it seems to be a complete puzzle to all the doctors Ive seen and I would prefer to find out what it is before I lose all hearing in my AN ear!!
I’m 11 months post op!  By six months I was actually feeling pretty good - we went on a family holiday and I was able to run along the beach, go down caves - tried some rock climbing which was fine on the way up but ended pretty hilariously with me screaming for help unable to get down!!    About June/July I noticed the tinnitus was getting worse and changing and over a few weeks lost about 40dB of my hearing across most frequencies in the AN ear.  At the same time my balance deteriorated.  This sent everything into a bit of a tailspin and my face slowed down its recovery too (at 11mths I am symmetrical at rest, have full eye closure – although it’s still weak if you ‘prise’ it open – a slightly slower blink on that side, a reasonable closed lip smile that looks happy, pleasant and  - I think – quite pretty  , my ‘big’ smile is still asymmetrical but I show enough teeth that people who don’t know me don’t seem to bat an eyelid or notice too much).  I had an MRI which showed no tumour regrowth (thank goodness) but no irritation or other cause for the irritation and loss.  They tested for autoimmune diseases - which were all negative.  The PT did tests which showed irritation of the vestibular system - worse than those shown in march.  The final outcome?  They have NO idea - they tried a course of steroids but this did little to help my hearing.  So the outcome is that I’ve had to go back to all my balance exercises from months ago, which is very discouraging, and they have recommended a hearing aid!  The only other information offered was that it could be irritation from the muscle packing that they place in the void after tumour removal.  the only option if that’s the case would be removing it - this would have to be translab hence I would lose my hearing.  There is also a theory that there is a small slip/stub of the vestibular nerve left in that ear which is regenerating.  Hence the irritation (whatever is causing it) is affecting that as well and making my balance deteriorate.  If this gets too bad they could offer radiotherapy to kill it but that would probably kill my hearing and affect the facial nerve too!
I’m not sure whether others go through similar things.  The Dr who did the surgery said that while there are a few patients who go on to lose preserved hearing, the general picture is very uncommon for people post AN surgery.  He has referred me to a Neurologist to see whether there is anything they can add.

I feel very frustrated at going backwards so badly - especially when I know have a very active crawling baby!  He's go, go, go this one!!  If any of you know others that have had similar experiences I’d be interested to hear!

Take care,
Heather

[sunfish]

Well, much of our "journeys" have been different, but I've had some similar experiences.  My AN was treated with CK.  I did OK for several months, but then experienced a long, slow backslide as far as balance goes.  My balance and wonky head got worse and stayed worse for about nine months.  I saw a jillion specialists, all of whom had zero answers. 

My CK neurosurgeon prescribed trental 400 mg. 3 times per day (pentoxiphylline).  They use trental to fight radiation-induced fibrosis after breast cancer radiation treatment.  I think it's an interesting idea for any sort of AN patient, because it essentially increases microvascular circulation.  In my opinion, this may be what preserved my hearing so well, and could also account for the recovery of my balance, at long last.

At any rate, I can really relate to your frustration, and I'm not sure there's always firm, specific answers for the strange things that happen to us ANers.  Hang in there, and I'm betting you gradually improve.

[Rivergirl]

I know how you feel, I don't think my post op experience was how I wished it to be.  That is strange though with a clear report and they can't figure it out..........how about House Ear Clinic?  Maybe they could give you an idea.......  I almost wish I had gone there even though I had a great team at Mass General.  I am 4 mos post op and my balance has not got worse, I went to therapy as well. I hope you find your answers and that it gets better not worse.