Underwent Gamma Knife for Acoustic Neuroma Yesterday

Initially, I introduced myself here on the forum without divulging too much of my current medical situation, as I like to be more private about such things. However I think that coming to terms and reaching out for support shouldn't be considered a weakness and that perhaps my own personal journey may be interesting to some in a similar situation.

Since finding out I had a small to medium size acoustic neuroma on my left auditory nerve I have been a wreck, terrified at the online stories I've read and fearful of the future. I lost a lot of my high frequency hearing not long after the diagnosis and gained what could only be described as painfully loud, screeching tinnitus at around 4 kHz. My quality of life was shattered and felt if I was a shell of my former self, driving up any previous anxiety and depression.

Fast forward a few months after numerous visits to doctors and specialists of various backgrounds I was recommended that in my case, gamma knife would be the best treatment option to stabilize the tumor and possibly preserve some hearing due to the size and location. During this time I feel like I had gained some ground on the tinnitus and was fading to a hiss rather than a constant pure tone.

Day of the procedure:
I am surrounded by the doctors who have helped me through the ordeal while I sit upon the gamma knife machine. A radiation oncologist, a neuro surgeon, a neurotologist, physicist and a very sweet gamma knife nurse/coordinator who was so kind to me. It was surreal, just several months back I felt great, now, I felt like a guinea pig. Never more have I wanted to be someone else in the room, alas that was not the case.

The ultra-tight fitting mask gets applied to my face and everyone leaves the room to observe me from behind a distant window. Without the Ativan I had popped a couple hours prior, this would have been extremely nerve wracking but I am focusing on a positive outcome I have read about. The doors to the machine open and I slide backwards on the table until it locks into place. I hear nothing but my tinnitus until a voice comes over the intercom that I am already a couple of minutes into the treatment and begins to play SiriusXM for me. The music was terrible but yet, extremely comforting. You're 20 minutes in, says the next voice and the table makes minor adjustments throughout the treatment. Almost 40 agonizing minutes pass until I hear, you're done!

The next several hours it felt like nothing had happened until I got home, a very bad headache and pain where I could only assume the acoustic neuroma resides, all of which I had been warned about. Tinnitus much lower than before but attributing this to the Ativan... Unfortunately, later that night Diplacusis arises for the first time and I hear sound at different pitches between ears only in higher frequencies. Ugggh!!!

Sleep was difficult although I was exhausted, headache, pain and what feels like swelling in my ear and now Diplacusis. Tinnitus is still low after 24 hours so we will see how things progress. I have been in touch with the neurotologist and informed him as advised. I think the most important thing is to forget all expectations and live day by day and try to adapt as best as possible. I am sure there will be more changes as time goes on but I am genuinely hoping that things fall into a happy medium for me. I feel like I have suffered so much already and envy those that have a "normal" life.

I know this is a super long post and appreciate those who have the patience to read it, we are all suffering in our own way but it makes a world of difference when you can share your pain and experience with others.

Have a wonderful day!

 

Thank you for sharing! It must be a relief to have the surgery over and done with. Please keep us posted on how things progress.

 

Hey there! Thanks for taking the time to share your story. I understand wanting to keep things private, but it is appreciated that you felt you trusted the community enough to open up more.

I can't add much to what you said, but I do want to remark that this procedure sounds terrifying. I looked a bit into gamma knife treatment beyond your post here and, well, that's likely something I'd want to avoid if at all possible. I certainly hope that it provides you benefit in the future, though having this extra symptom does not sound good at all. Since you said you were aware of it, does the doctor have any idea how long this could last? I will assume this is just a temporary thing.

I wish you all the best on your recovery and the future.

 

Thanks @Drachen, I'll keep fighting the good fight until there's no more left to give. Unfortunately I had no choice in the matter, it was either Gamma Knife or traditional surgery, which the surgeon said would be a poor choice based on the size. My best guess on the Diplacusis development is swelling around the nerve... I don't have any additional hearing loss yet so it's puzzling. Although I did get prescribed Medrol this afternoon so I'm crossing my fingers it resolves itself, if not, it's likely permanent.

All the best with your endeavors as well my friend!

 

Well it's been four days post Gamma Knife surgery.

Diplacusis disappeared the day after taking Medrol and I'm really hoping it doesn't return as I'm tapering off. I still have some in ear pain but I was told it should subside.

I'm grateful for having hearing in this ear still but time will tell how much of it I can keep. Tinnitus has been nice and low today, I have been experimenting with playing 4 kHz chimes while I sleep and plugging the good ear. I'm also doing AudioCardio through the app. May be a waste of time but it breaks the hopeless feeling I have.

Weening off steroids is also no joke... I feel depressed/numb/angry over things but just keep telling myself time will heal. Time seems to be the cure for everything.

 

Are you still using AudioCardio? If so, have you noticed any benefit? I tried it for a month and didn't really notice any changes in my hearing and tinnitus. I'm contemplating sticking with it for a few more months.

 

Absolutely nothing, at first I thought it lessened my tinnitus slightly after using it everyday but then I stopped using it and it was the same. Another reason I stopped is because after about 2 weeks, I noticed a high pitched tone in my good ear! So I gave it a few days rest and it went away.

I was really hopeful I'd gain a few dB but didn't.

It's pretty pricey per month considering I could probably do the same thing online with some tones at a barely audible volume!

 

I did notice after a few days that I developed a beeping tone, but thankfully that went away. A shame that it doesn't seem to work because of the glowing reviews, but they could just all be paid actors.

 

Thats exactly what it was for me as well, scared me because I didn't want to add tinnitus to my good ear and contend with a cacophony of sound from both ears. I think AudioCardio is all marketing and scam reviews.

 

I also have a screeching 4 kHz sound. It's the absolute worst. If I could just get that one tone to go away, I'd happily keep the rest and go on with my merry life.

 

It's pretty terrible, although I'm sure others would say theirs is the worst and I don't think I'd trade one for another because they would all be mind numbing if loud enough. Today I have been blessed with very low tinnitus, a glorious day indeed.

 

It hasn't been too bad so far. I know you have taken some time off but also hoping you are doing well!

 

Bad news everyone. Here is my 1 month update post gamma knife, well almost 1 month, just a few days shy.

I had a great couple of low tinnitus days until last night, when it went into full beast mode and I was not in a good place. Figured it was a spike and woke up this morning with losses in the upper frequencies, 4 kHz, 6 kHz and 8 kHz. Not sure how much because I gauge it using an online audiogram but it's definitely noticeable and sensitivity is back when hearing certain sounds.

Awaiting a Medrol dose pack from my neurotologist. Hoping this will restore some of the loss.

The struggle is real and the saga continues...

 

Well, just got back from the audiologist. Lost 10 dB from 3 kHz to 8 kHz. Doubting the Medrol will have any significant effect improving it at this point.

I would be perfectly ok with the hearing loss if it weren't for the hissing tinnitus and reactivity that has now returned. Will have to give it time and hopefully the reactiveness fades again. What an unfortunate turn of events.

 

Well today marks one month since my procedure. Since then I have recovered from diplacusis, endured further hearing loss and have good and bad days with tinnitus.

Some days it's nothing more than a faint ring with a few light beeps that I can hear (which are actually very soothing). Other days, I'm surrounded by a head static/sizzle sound on the left side which questions my will to live.

Since I've been unable to take an extended audiogram around here, I used to check my hearing with a frequency sweep and hear up to 12 kHz in both. Now I can't hear past 8800 Hz in the affected hear at max volume. Not good.

The saga continues...

 

I feel for you my friend. Sounds like quite a battle but you seem to have the right attitude and lots of expertise on your side. By your name it sounds like you have a pug to help as well.

Dogs are amazing and can really lift your spirits. Thanks for letting us in on your struggle. Hang in there and I wish you all the best. Your northern Neighbour.

 

Thanks for sharing your story. How is your audiogram right now? Were you able to preserve most of your hearing after the surgery?

 

My audiogram results dropped significantly before and after surgery. Right now I am -70 dB at 3 kHz and 4 kHz, -50 dB at 8 kHz. I can hear pretty well still, it just sounds dull. It is odd as many online resources suggest that you lose hearing gradually with an AN but could also lose it rapidly depending on cause. It may be nerve damage but could also be toxic secretions hitting the cochlea. I am hoping it is toxic secretions as FX-322 may be able to be of some help if successful.

 

Thanks for sharing your experience. I can imagine what you mean, it must be like having some hearing loss and hearing through earplugs. You can still hear and understand what is said, but there are no nuances to sound, it sounds very muffled, consonants missing, background and ambient sound missing.

Let's hope for a future treatment to restore hearing.

 

Thank you very much. I hope for future treatments and relief for everyone on here!

 

Thank you very much. Yes, I not only have one pug who has been by my side for almost 9 years now but a pug pup as well. So I am in good hands... or paws!

Hope you are doing well too.

 

Pictures pleeeeeeeeeese!

On a serious note, I’m very sorry for what you’re going through. I hope at least the reactivity goes away quickly.

 

Thank you, as I am sorry for you as well. I truly hope all of us on here will find relief.

Here are two faces that brighten my day and make a bleak situation a little better

 

Awwwwwww, I love them. Your fawn pug reminds me of my boy who passed away last year at 13. Best dog I ever had and I miss him so much. I’m also insanely jealous of your little black pup! I’d love to have one of those. I just need to wait for my hyperacusis to hopefully calm down enough to tolerate puppy noises again. Please give them a scratch for me I can’t think of better company to have cheer you up.

 

Thank you and yes they get plenty of loving so I will give them a good belly scratch for you. The apricot is Butch, he is almost 9 now and is my best bud, been through great and hellish times with me by my side. It will be a very sad day when he passes... The black pup is Rocky, she is barely 4 months old and full of energy.

Honestly I was happy with the one, but my parents' pug had pups and this one needed a home, so here she is I've always wanted a fawn but never worked out that way. I love your pug's color. Hopefully things settle down for us and we can have more paws on deck. Have a good day!

 

Well, after several months since the onset of hearing loss and massively tormenting tinnitus, I think that I have had positive progress.

At first it started as a loud, intrusive pure tone around 4 kHz. This lasted all day everyday for about 3 months which usually never changed in volume. After the 3 month mark, it changed to a loud hiss with hints of an underlying pure tone.

At 4 months it seemed to lose the pure tone and the hiss is not quite as loud as it used to be. If I would have to guess I would say 20% decrease in intensity. Hopefully this continues and over the next year it steadily continues to decrease in volume and reactivity.

Until then, the struggle continues as does the saga...

 

Dang, lucky you! If your parents live in South CA and ever have too many pugs again, I’d happy give one a good home... ears be damned!

Glad to hear the tinnitus seems to be calming down. I had a similar experience where it was hellishly loud like a screaming tea kettle for about a month then it simmered down to a hiss that I could easily ignore... at least until my hyperacusis got really bad and now it’s up and down and more electrical in tone. I imagine that you’ll continue to experience improvement as time goes on.

 

Week 5 Update:

I am very pleased with my progress so far. For the last 5 days my tinnitus has been very quiet, the hiss that usually had been encompassing has now faded to a low volume, hoping this is the new baseline if you will! All that remains that I find troublesome is the reactivity to certain frequencies, which I have hope for because it took approximately 4 months for my last reactivity to die down.

If that is the case I will be in a very good place. Hoping for the best as always. If I am correct at assuming there is cochlea hair cell damage and the nerve is still relatively good, then the highly anticipated FX-322 may just help if it is successful at treating lower frequencies than 8 kHz. It would be a miracle if my left ear would be able to hear those higher frequencies again, but for now, I will take the positive progress I have been given.

 

@Drachen, you're back! How have you been my friend?

 

It's quite a relief to hear that you've been doing better than the update from the middle of February. I had worried after reading that, but it's great to see you're making improvements now and are on the way up. Time seems to be serving you well.