2 1/2 years since Gamma Knife and problems are surfacing.

[sewnice50]

I wanted to update my status and welcome any support.
I had Gamma knife 30 November 2006.  It was 1.7cm and swelled to 2cm after the procedure.  Last May 2008 it was back down to 1.7cm.  I noticed no changes until about 6 months after the procedure, then I started with some tinnitus and a small amount of hearing loss.

I have graduated to an MRI every year instead of every 6 months and my next one is May 11 this year 2009.
Over the last 8 - 6 months I have lost most of the hearing in the AN ear.  If I put ear buds in the AN ear and listen to my
IPod it seems like I have no hearing loss at all, however, the An ear is now so sensitive to sound I am in pain, well pain is not a good word, it's more like severe discomfort and severe tinnitus.  I wear an ear plug in my AN ear when watching TV or at the movies.  If someone is talking loudly I have to plug the ear to stay focused because of the "discomfort". 

The latest problem I am experiencing is vertigo.  It's been steadily getting worse in the last 3 weeks.  I have not fallen, but I am bouncing off walls.  When turn my head the tinnitus pitch changes, I am dizzy but only when turning my head while walking or sitting.  It seems to be affecting moving my eyes also.  My Dr. has said we will look at this May 11 when I see him.  Have any of you had to deal with vertigo?

I do not regret having the Gamma Knife procedure. I am still doing ok considering what I have to deal with.  My quality of life is good even though I have some problems.  I can deal with all of this.   I wish everyone the best.

[ppearl214]

sewnice! So good to see/hear you! Been a while and hope you are doing ok......

You had your GK not that long after I had my CK and actually, you sound like you are running into some same things as I did.  I had onset of vertigo here and there, or my hearing would go very funky on me.  I phoned my radio team about it, asked a few other radio patients and checked with the drs on the CK patient support website.  I was told by many that even this far out, post-radio, these things could crop up and that it's not "usual" but not "rare" either.  I know of others (as well as myself) that tried a short term course of valium (2mg, 2x/day) for a couple of weeks and that did help with the veritgo, as well as some vestibular exercises that my neuro onc shared with me.  As for the ear pain, I have not had exterior ear pain but very funky feeling inside my head, by my ear, that comes and go.  Much of what has been going on with me over the past few years I had heard about and, in my case, just came to terms that much of it is all part of the "AN journey".  Go figure.....

Please keep us updated on the May 11 MRI and dr visit.  Your story will help many here that may be researching GK (or other treatment options) and will be valuable to many!

Great to see you!
Phyl

[GM]

When I had my GK treatment I was told that my remaining hearing in my AN ear was not guaranteed to stay and that most likely I would lose it entirely.

What you have now sounds a bit like Hyperacusis…an over-amplification of environmental sounds in the auditory pathways, (everyday sounds seem too loud).  I worked with someone who had Hyperacusis and they wore a hearing aid to turn down sound when their ear was bothering them.

You vertigo may be from your balance nerve.  Did you ever get an estimate of your balance loss when you had you’re AN diagnosis?  Mine was rated at a 95% loss in my left ear.  Maybe with the hearing loss you have also lost a bit of balance as well.  The good news is that the other balance nerve will compensate. 

I wish you the best on your upcoming visit with your doctor.  Maybe a hearing test and balance test might help with the diagnosis?

Gary

[GRACE1]

Please update us on the May 11 appt. 

Thanks!
Grace