Author Topic: Wishing for hearing preservation and few side effects....  (Read 811 times)

sycamore

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Wishing for hearing preservation and few side effects....
« on: June 22, 2020, 10:52:42 am »
There are disagreements about the benefits of fractionation (SRS hypo-fractionation) for hearing preservation, tumor control and reducing side effects. One key thing for hearing preservation seems to be low radiation dose to the cochlea, size of tumor, swelling, no hearing loss beforehand and who knows....after reading a ton, I think it is the luck of the draw.

I'm really struggling with the prospect of losing my hearing completely and having many side effects for my medium size AN in the years to come. I'm thinking of trying Cyberknife but not even sure why this choice... I decided against surgery though not sure this is the right choice either.

My hearing situation is weird --in my AN ear, I can much hear better in parts of the ear (pushing iphone earknob up) rather than directing the microphone further into the canal. Anyone have that experience? One doctor said lady "you think you are hearing but you are essentially not hearing which is quite common" which in my view is just wrong. I have diminished hearing but I can hear, use a cell phone in the ear etc.

Frustrating to have to disagree with audiology report --

1.5X2.5X1.4 cm (strange shape).
imbalance (walking helps)
mild tinnitus (accepting it helps)
slight phantom pain/ache in the AN side of the face (comes and goes)
« Last Edit: July 05, 2020, 02:15:36 pm by sycamore »

gbly

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Re: Wishing for hearing preservation and few side effects....
« Reply #1 on: September 26, 2020, 07:58:03 pm »
Good day Sycamore,
I have almost the same exact symptoms as you are, but mine is rapid growth, so had to act on it. I get a slight pain behind the ear by the jaw (there is a pressure point there - feels like someone pushing on it).  I do have some hearing, but just had proton therapy and right now the hearing is very diminished, assuming some swelling.  But the Doctor did say that in a few weeks I should get back to where I was before the radiation and hold there. Not 100% sure on that, we will see.

Like you I was not comfortable with the surgery. You get 100% lose of hearing with the surgery!  I am just day one post radiation, slight light headed, but not bad. Feels like a slight buzz, so not comfortable driving while it settles.

It is always hard trying to figure out which way to go. I wish you luck on your journey and what you decide.  Keep us posted.
gbly

mwatto

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Re: Wishing for hearing preservation and few side effects....
« Reply #2 on: October 05, 2020, 06:30:37 pm »
Hi I had Cyberknife 18 months ago for a medium size AN and I had three sessions. I had my second MRI follow up and audiology. I feel I can hear really well (I did not have hearing loss before) right now I do not need a hearing aid though in some ranges I think my hearing may be fading. If I do find my hearing deteriorates - much like getting glasses - I will get one because of cognitive protection. The brain needs all senses to function optimally I was told by the audiologist. I have noticed that when very tired the tinnitus is more apparent and especially after driving re vestibular stimulation.
Michele
20 x19x14mm AN diagnosed Feb 2019. Cyberknife .
Mri Oct 2019 showed shrinking to: 18x17x13 mm.
Mri Oct 2020 - no cystic components visible now. Slight shrinking, stable.

 


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