ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Pascale on November 20, 2008, 01:46:10 pm
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Hello everyone
I was wondering if any of you is experiencing some hearing change after CK treatment. I feel that sometimes my hearing comes and goes (like 10% loss). I'm wondering if it means the tumor is sweeling?? :-[
Thanks!
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From everything I read from poster's experiences this is normal, although different for every person. Some people completely lose their hearing, then get it back when they are on steroids.
I would call Dr. Chang and ask him what to do. I have swelling around my tumor, and it hasn't even been radiated yet. My hearing is distorted even with that.
Tisha
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Hey Pascale! Good to see you! And Tisha gives great advise as well :) (Good job, tisha!)
I can share, from my own personal experience, that I began to have slight hearing diminish approx 3-6 mos post CK. Had hearing test that confirmed I had lost approx 5 db during that time. Radio-doc attributed it, as Tisha noted, to the tumor swelling post CK. For me, I didn't have to go back on Decacrap or such. After the tumor swelling stopped, my hearing went back to what it was pre-CK.... and for me *knock on wood*, has remained the same ever since.
Maybe a short course of steroids or OTC anti-inflammatory (ie: Ibuprofen), etc. I would also give your radio-team a heads up on this... not sure if they will want a hearing test done or meds to help control possible swelling. You are at that timeframe for such to potentially crop up.
Hang in there!
Phyl
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Hi, Pascale:
I noticed a significant decrease in my hearing at high frequencies and, briefly, mild hyperacusis, beginning at about 3-1/2 months and 4-1/2 months respectively post-CK. The hyperacusis largely resolved itself within about 5 days. My audiogram at 5 months post-CK revealed I've lost 15 dB more hearing at 2 kHz and my speech threshold had also worsened by 15 dB over the past 5 months. Dr. Chang told me that I might get that 15 dB back at some point, if the cause was tumor swelling. My followup MRI (at 5 months) showed 1mm growth along one axis of measurement and 2 mm along another, but 1-2 mm is the margin of error for MRIs, leading the radiologist to conclude that an increase in size couldn't be confirmed. That is, my tumor might've been that big in the preceding MRI but the film slice was taken at a point which wasn't the thickest span of the tumor (making the preceding view look smaller).
Subjectively, I felt that my hearing at 4-1/2 months was significantly worse than it is now, so perhaps I got some back after the initial loss.
Best wishes,
Tumbleweed
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I've had no change in hearing so far -- it's been about 16 months since treatment.
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Hi Tumbleweed,
I bet the growth is just swelling, it seems that so many people have that. Aren't the symptoms up to 2 years? I'll keep my fingers crossed that you regain your full hearing.
Tisha
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Mine, too has increased and is fluctuating. I do have proof through the 6 month post ck MRI that indeed the common swelling occured (with the necrosis - yea!).
Mary 8)
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Hi Tumbleweed,
I bet the growth is just swelling, it seems that so many people have that. Aren't the symptoms up to 2 years? I'll keep my fingers crossed that you regain your full hearing.
Tisha
Thanks for your well wishes, Tisha. From the studies I've read, swelling can occur as far as 3-1/2 years after treatment, so I assume that also means related symptoms can happen that far out, too. Hopefully I'll be more like Francesco and be done with these side effects after about 14 months. The hearing loss is really the only symptom that has me significantly concerned.
Best wishes,
Tumbleweed
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I'm 4.5 years post-op with proton beam. Complete hearing loss shortly after surgery and constant tinnitus. No fluctuation on the hearing unfortunately. After 3.5 years of no growth my tumor has increased somewhat dramatically in the last year. It was at 6mm post-op but last March was at 11mm. Last MRI...mid Dec. it was still at 11mm so i've got my fingers crossed it will hang there awhile. Not sure what I'm going to do if its really growing again.
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Stoneaxe:
Of course, everyone's situation is different and nobody can or should tell them what they should do. I can only say what I would do in your situation and absent any more specific information and advice from doctors.
If your tumor is largely confined to your IAC and you've already lost hearing on that side, then your greatest risk with watching and waiting would be to your balance system. From what I've read, balance is usually most affected when an AN is small. That's because, after the AN has grown sufficiently to severely damage the vestibular system, the other (good) side largely takes over and the brain somewhat ignores the absence of signals from the damaged side. (This is called "compensation.") Or at least that's what some literature I've read asserts.
That said, further degradation of sense of balance is your most likely risk. The facial nerve is much more resilient than the sensory nerves, such as the hearing and balance nerves, so while it's possible you could suffer the onset of hemiparesis, it's less likely than having your balance worsen. Once the AN grows into the CPA (cerrebelopontine angle) and approaches the brainstem, other cranial nerves such as the trigeminal nerve also become at risk for damage.
If it were me, and I must stress again that I'm only talking about myself, I'd watch and wait til either the tumor got a lot bigger or I started noticing an increase in symptoms. No treatment is without considerable risk, as you well know.
The problem is that this is all a big guessing game. I'm currently watching and waiting over a possible second tumor in my hypoglossal canal. We can only place our best bet and then let the chips fall where they may.
Sincerely,
Tumbleweed
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Just had an audiogram today and I'm considered stable. AN side equates to mild loss and left side is within normal range. I feel it's diminished somewhat over the past 6 months or so. With increased tinnitus, the audiologist said it's likely perceived as loss when it's more than likely fairly normal hearing masked by tinnitus. Hope that makes sense. I agree that I tend to notice the tinnitus more.