Underwent Gamma Knife for Acoustic Neuroma Yesterday

Nice to read your progress. I have a similar story, except my acoustic neuroma is on the right. I wish you continued success.

 

Sorry to hear that, did you gradually lose hearing or was it sudden like mine? How is your word recognition and pure tone thresholds at higher frequencies?

 

I had my ears cleaned with the vacuum/suctioning device that they used.
A week later I came back complaining that I had a ringing in my ears. The ENT thought I wanted to sue them for malpractice and whipped out charts on how cleaning ears doesn't cause damage or ringing. At this point, I never knew or heard the word tinnitus.

I presented him with classic Acoustic Neuroma symptoms, such as having to answer the phone with my other ear, etc., but it all was to no avail. This ENT was clueless.

About 45 days later of panicking with my mom, not knowing what the heck is going on with this new ringing, a different ENT from Harvard finally prescribed an MRI.

And the rest is history.

It was sudden hearing loss which got progressively worse after the Gamma Knife procedure. Much worse 10 days after Gamma Knife.

I have the classic Acoustic Neuroma high-frequency loss bell curve on my audiogram. My word recognition isn't too bad. I miss like 3 words out of the set. I don't have the current audiogram. I'm getting a new hearing test Thursday and will update.

I flew out-of-state to get the best Gamma Knife treatment I could find. Given my deck of cards I was dealt, I think I made the best decision I could at the time. It's like getting a 16 in blackjack. Not a very good hand however you play it. The insurance paid well over $100k for the Gamma Knife when everything was all said and done.

Since I still have some usable hearing left in my right side, the best thing for me is finding a hearing aid that amplifies the natural sound around me as opposed to masking. Hopefully they will present me with new options Thursday at my audiologist appointment.

I'm hoping the new FX-322 will still be effective on hearing loss and catastrophic tinnitus caused by Acoustic Neuroma.

 

Very interesting to hear your story and to see similarities and differences. Mine was also well over $100k, thank God for insurance!

I found out about mine and literally had about 3 weeks until I woke up one morning and heard screaming tinnitus in my left ear and hearing loss. I had additional hearing loss while waiting for treatment and have remained fairly stable post treatment. It's been 6 weeks now so I'll have to wait at least a year to see if it has started to shrink, if it does at all.

One thing that gives me great hope for FX-322 is that in all of my research and talking with my neurotologist, is that I believe my hearing loss was caused by toxic secretions from the tumor that damaged cochlear hairs. I read a recent medical journal that outlines how they once believed hearing loss associated with acoustic neuromas was due to nerve atrophy. However, they conducted a study on patients with acoustic neuromas and revealed that if you have good word discrimination scores but poor PTA, then it's very likely you have damaged cochlear hairs. If that is truly the case, FX-322 will be a miracle for us and will probably restore much of our hearing and relieve tinnitus to a degree.

To be brutally honest if I could lessen the tinnitus and get rid of the reactivity of it I would be happy. I can get used to the hearing imbalance but not the tinnitus as it presents itself currently. I have made progress as it is no longer a pure tone whine and now is a moderate hiss but the reactivity to certain sounds is awful.

Best of luck my friend, I truly hope nothing but success for Frequency Therapeutics and for us!

 

Many thanks for the encouraging research regarding FX-322. I'm with you regarding lowering the tinnitus. At the beginning my ENT would inject a liquid steroid into my eardrum and this would provide relief for a full week from my tinnitus. I could still clearly hear it but it was so low it was welcome.

Unfortunately, after the 3rd weekly injection it no longer provided that relief anymore and had no effect. I guess people who receive cortisone shots say 3 is the max too.

Apparently my brain was extremely swollen a few weeks post GK that I was issued steroids. As you know, it's common for the AN to shrink the first couple of years after GK before remaining stable. If the AN hasn't grown in the first 5 years post GK, then it likely will never grow. At least this is what I've read when I was obsessed on the ANA forum back in 2015 before my GK. I will never forget that feeling of anxiety and terror. I actually had the 4 metal rods screwed into my skull back in the day (March 3, 2016) for my GK. I believe now it's different, as the brand new GK machine was just released days after my procedure on the "gold standard" older machine. Such is my life.

Anyhow, for sure I'm cautiously optimistic regarding Frequency Therapeutics and hopefully we no longer have to grasp at straws for some kind of relief. We will keep our fingers crossed for success!

It's been so long I can't even imagine how my life would change with relief from tinnitus. It would put me in a welcome manic state.

 

Week 7 Update:

Well, it's been almost two months post surgery and I can say that the last week has been inspiring. I'm not sure whether it is my brain adjusting to the loss of hearing or other factors at play like sleep but roughly about a week ago my constant hiss has become somewhat intermittent. There is always a low level hiss which is reactive to certain frequencies but there are times when it is almost dead silent (absolute bliss).

This has lasted several days and I do notice that when it is very silent, the reactivity diminishes but doesn't completely go away. There has been a setback day where the loud his returned, but it was after a terrible nights sleep where I got about 4 hours total.

I know it's not much to report but I consider it monumental at this point and pray that I keep having these milestone achievements. It is remarkable that I can still hear quite well out of the affected ear, I may not hear pure tones at 3 kHz and 4 kHz well but word recognition remains quite good. See attached recent audiogram.

 

Week 8 Update:

Crushing news today regarding the outcome of phase 2a trial from Frequency Therapeutics. I had such high hopes for FX-322 but we will see how they intend to press forward. I suspect with a different trial structure, formulation and perhaps time between shots, they may still have a successful outcome. Although they seem to be focusing on a single shot for future testing.

I have had some good days regarding my tinnitus, some days are relatively quiet while others I experience a moderate hiss that is still reactive. I am also experiencing some mild pain located deep within the ear, I suspect the radiation's effect is causing swelling which I have been told about. At this point, I am fine with the hearing loss but would really appreciate further progress on the tinnitus side or at least a viable treatment option.

The saga certainly continues...

 

For being just two months post-op your progress looks very encouraging. The fluctuations are perfectly normal. Hopefully they will even out to something you can manage nicely.

I'm just over 5 years post Gamma Knife. Unfortunately, my audiogram this afternoon at the University of Michigan is more severe, and word recognition is at an all time low at 44% in my affected right ear.

Plus, to make matters worse, both of my doctors were rather passionate regarding how OTO-313 and FX-322 would not benefit me since my hearing loss was caused by an Acoustic Neuroma rather than the traditional hearing loss of "old age, etc."

They both said this was the case as well regarding Cochlear Implants since my hearing loss was caused by a brain tumor.

She also confirmed most people who have Gamma Knife lose most of their hearing after 10-years in the treated ear.

Anyhow, as you know everyone's situation is different. I'm still confident I made the right decision selecting GK, seeing how many people in support groups have to suffer from facial nerve damage.

In any event, I will be trying Resound One and Phonak hearing aids next month to see if they may help my catastrophic tinnitus by amplifying natural sound.

As I promised, here are my two most recent audiograms. The first from the University of Michigan Ann Arbor this afternoon, followed by my previous audiogram just 3 months earlier from Michigan Ear Institute.

 

Thanks for the reply along with your current situation, it certainly is tough dealing with hearing loss and tinnitus. Hopefully we can ride this out until we find some sort of personal relief buddy!

I spoke to my otolaryngologist yesterday and briefly asked him his thoughts about what happened with the outcome of FX-322, I couldn't even finish my question and he begin laughing and said he basically saw it coming given their approach, but, he is encouraged by their initial success from Phase 1. He further stated they are going to need time to develop it as it sits before something can become commercially available.

I posted a link to a medical journal in the Frequency Therapeutics thread outlining how it was once thought acoustic neuromas caused hearing loss by nerve atrophy, but their findings indicated substantial OHC and IHC damage in most patients. It is possible that some acoustic neuroma patients hearing loss is due to nerve damage but not all, so I wouldn't discount hearing regeneration yet.

My acoustic neuroma is located far from my cochlea and the radiation fall off and impact was minimal, my otologist and radiation oncologist both believe that my hearing should remain decent given those facts and is not out of line in similar patient outcome they have done over the years, so like you said, everyone is different.

I hate to say it but I have the latest Starkey Livio Edge AI 2400 and I barely use it... all it does is deliver more noise in noisy environments and sounds artificial. I prefer just not using it because it feels like a waste. Hopefully you will have better luck!

 

Hey @Guywithapug and @gregmech26, I just wanted to chime in and say you guys are absolute warriors for going through this. Seriously lads, pat yourselves on the back. I've read thru your stories and my heart goes out to you. You guys have handled it all way better than I ever would've in your shoes. I hate the fact I can't do sweet fuck all to help, in a tangible sense, but I still want to send as much brotherly love and support your way that I can.

Keep fighting the good fight boys.

 

I second this. I have just read through this thread. My thoughts and best wishes are with both of you.

 

I'm praying for you guys. Your stories are complete demonstration in courage. I just joined this group and its really been helpful. Thank you for sharing.

 

Thank you all very much for the heartwarming display of support, it really helps uplift the mood and fuel the spirit to keep fighting each and everyday.

I must say at first I was nervous but now having gone through everything, I've developed a "IDGAF" attitude to it. I will live my life my way and not mentally surrender to this ailment. Reading some people's stories on here makes me think I'm the lucky one, as I don't appear to have symptoms as bad as they do and I know time will heal, mentally and physically.

Best wishes for all!!!

 

Yes! Thanks for all the kind words from everyone... It's interesting how there is more encouragement and empathy from members on Tinnitus Talk than from my real life doctors and audiologists.

Thanks again for the support! My family was blown away when I told them about this

 

Week 9 Update:

Just came off of yet another Medrol dose pack, was concerned about swelling and an accompanying pain felt deep within the ear. Everything seems to be ok as of present, no more pain or discomfort. Tinnitus hiss seems to be evolving slowly into a slightly lower hiss with a soft bubbling, reactivity still seems to be very prominent unfortunately.

I'm noticing a pattern developing of moderate hissing tinnitus followed by 1 or 2 low hissing days, then back to moderate again for a couple days. Its still very promising at this point because overall, I'm in a much better place than a few months ago. Waiting desperately for the moderate hiss to transition into a low hiss and reactivity to fade, which I believe it will.

 

For those that may find it interesting, below I have created the progression of my tinnitus thus far. HL indicates Hearing loss.

Quiet pure tone --> (HL) Severe pure tone --> Severe hiss- -> (HL) Loud hiss --> Moderate hiss --> Intermittent moderate hiss

 

Week 10 Update:

Well there were some good days last week regarding my tinnitus level and associated reactivity. For 3 days it was very quiet and only heard a deep, faint bubbling sound is how I can best describe it. I was out in the yard enjoying the warm spring weather and really enjoying hearing nothing. Unfortunately, the pattern I discussed last week seems to persist as the louder hiss keeps coming back every 2 to 3 days and it makes my attention and focus difficult to maintain. I sincerely hope that the hiss will continue fading and the reactivity lessen! I will be happy with a faint hiss and the hearing loss.

Something I have begun to notice over time is a correlation between taking acetaminophen and the hissing volume I hear decreasing for at least a day maybe a little more, it also appears to lessen the reactivity. I've tried to research this but have come up with nothing, perhaps @FGG can offer any possible explanation or theory?

Also still uncertain whether my reactivity is hyperacusis from auditory inflammation or sound sensitivity from hearing loss. God I hope this goes away or at least lessens over time. If not, my only hope is Otonomy's OTO-313 to perhaps dampen the volume/reactivity but who knows if that will work or show positive result in the trial.

 

Week 11 Update:

I'm finding it increasingly more difficult to provide new information in my weekly updates, so perhaps after the next I will consider moving to updates every 2 weeks.

There hasn't really been anything new to discuss so far, everything is about the same as the week before. Mild to moderate hissing most days with some good quiet days sprinkled in between.

I have been really hoping to make more progress but it has only been almost 3 months since surgery and almost 5 since onset of hearing loss and tinnitus.

I do consider myself quite lucky so far, I see so many stories of others terrible hyperacusis and debilitating tinnitus which affects their life in such a negative manner. I wouldn't say mine is debilitating but very annoying indeed. It's hard to focus and concentrate on moderate hissy days, but I continue to press on the best I can.

Truth is I am still in unknown waters, as the radiation effects can take up to a year and a half to stabilize, so I don't know exactly what awaits me but I seriously hope the tumor growth will be halted at that point and that it will eventually shrink or at least never grow again.

I think at the 5 year point I will be much more confident if there is no more growth, as the likelihood of it spontaneously growing again would be very low.

My only real complaint at this point is the reactivity to certain sounds, the hiss likes to raise in volume and compete with external noises. Hopefully this fades but who knows at this point, God help us all with some form of medical treatment please... we could sure use it.

Goodnight all.

 

Week 12 Update:

Well today marks 3 months since I underwent the Gamma Knife procedure. It has been a journey of ups and downs but overall I feel as if I am steadily making slow progress. At this point, waking up in the morning either brings a day of moderate hissing with heightened reactivity or very low hissing with lower reactivity. I felt yesterday I had a breakthrough, because the hissing reactivity seemed to be dampened which has continued through today. However, the baseline tinnitus is difficult to determine because I can have 3 good days and 2 bad days or 3 bad days and one good day. It is still inspiring because its not all bad days like it was before and I keep hoping for more progress.

I think at this point I will continue to provide updates every 2 weeks starting today. There is just not enough new information to provide and don't want to run the risk of sounding repetitive with "still have hissing and reactivity."

My whole goal in providing these updates is to log my own progress or lack thereof but to also be a journey for others to read about whether they are facing a similar situation or not. I look forward to the day that I feel "myself" again and can conclude my updates, I am not there yet. Who knows where this journey will take me or where I will end up, hopefully in a good place.

 

Week 15 Update:

A week late but who's counting anyway! Not much new has happened at this point, good in a sense that my condition has not worsened but bad because I have not made any more progress.

My low tinnitus days seem to be more sparse now. I used to get them after 2 to 3 bad days but now I'm lucky if I get 1 a week. This could be due to the fact I wear my hearing aid all day now, it helps mask the hiss but seems to have altered my good/bad day pattern.

On a side note, I have recently developed an under eye twitch on the neuroma side, not sure if this is a Gamma Knife side effect or unrelated. It is intermittent but pronounced, so I decided to get some Botox today to stop it. We will see what effect it has. I also discussed getting more for my TMJ issues in 2 weeks.

Till the next time!

 

Week 18 Update

I would like to take this opportunity to thank everyone for reading journey and providing support along the way, your well wishes have been invaluable in the long run.

My initial intent was to continue providing insight through weekly or bi-weekly updates, however, I have given much thought in winding this down to a close for reasons I will elaborate on below.

Over the past month or so, I have found myself in a better mental sphere, I have began getting back into my day to day routines and find my tinnitus isn't as bothersome as it once was. Perhaps my condition is continually improving or maybe I'm just paying less attention to it. I've found the time away from this forum has been refreshing and much needed, allowing time for myself and taking my mind off of constantly thinking about tinnitus. I see a lot of regulars here looking for comfort, which is fine, but I feel it's akin to constantly ripping a scab off of a wound and never allowing it to heal. My non professional advice for those who frequent tinnitus support websites and look for comfort and answers is to detach yourself and sever the support cord. Allow yourself to get comfortable in your headspace and find meaningful support beyond the pseudoscience and opinions that appear to dominant this space. While it can be helpful to converse with others sharing similar conditions, it can also create a mental confinement and never allow yourself to thrive under other circumstances because your mind is always on your condition. Find things to make yourself happy, go out and do something different for the next few weeks, the change may be as refreshing for you as it is for me.

If fate has it that a treatment will come then it will come, and if not then it won't, but no amount of wishful and optimistic posting on here will change that.

So with that being said, I plan on taking a long hiatus in posting any new material through my updates. I may provide some additional insight in the future but don't intend to spend much time on here. I have been in a much better place lately and it began by unteathering myself from focusing on my tinnitus!

 

Week 27 Update.

Just got my 6 month post-surgery MRI results back. All looks to be good, significant central tumor necrosis (approximately 40-50% cell death) and some swelling, which was expected.

Next MRI at the very end of the year, hopefully the swelling will begin to subside, but it still may be too soon. Year 2 and 3 scans will be the most telling if the procedure is a success at halting growth. Here's crossing my fingers in the long run.

No additional hearing loss, tinnitus still at a moderate hiss most days. Reactive tinnitus appears to have toned down slightly.

Have a wonderful day!

 

Awesome!

 

Week 42 Update

Been a while since I last posted. Not too much has changed, maybe the tinnitus is fading slightly or I am becoming used to it, but it's less bothersome than before.

I wanted to catalogue my MRI results and display the progression of the tumor before and after gamma knife. So far I have the one at discovery and one 6 month post-op. There will be another at the end of the year.

Cheers everyone.

 

Week 47 Update

Good news just in time for Christmas. Results came back for my 1 year post op and I have significant shrinkage. It appears that the necrotic center was the cystic component and deflated. Overall the tumor size has decreased, approx 1.49 x .88 cm now.

Still waiting to talk to my neurotologist about it all but I am pleased with what I see.

As for the symptoms, I still obviously have high frequency hearing loss which is permanent and tinnitus. The tinnitus is tolerable, especially with a hearing aid and presents itself as a constant hiss. Some days are lower than others and on a rare occasion, I can't hear it at all. Struggling with fatigue and lightheadedness, it could be a caused by several things but my hopes is that it will subside in time. Balance is still good.

Have a great holiday season everyone!

 

Merry Christmas! That's the best gift ever. Your situation reminds me a lot of my case.

I'm glad you have enough hearing left that the hearing aid helps. I fear what I will do when I go completely deaf in my right ear and the hearing aid will no longer be beneficial.

I started going to the University of Michigan Tinnitus Clinic in Ann Arbor and the Audiologists there have helped a lot.

I found continual daily use of the hearing aid helps the most, even when I don't feel like wearing it. It's like going to the gym. You have to wear it everyday even if you don't feel like it.

I also have high frequency hearing loss, light headedness and fatigue. I'm almost 6 years out of Gamma Knife.

Now I'm experiencing forgetfulness / short-term memory less; however, at age 47 that could be the result of anything.

Thanks for the update and continued success.

 

Sorry for the delayed response, I never saw any notification for your post. Thanks for the well wishes, things are going ok so far and hopefully it will continue to get better.

You're right about the hearing aid, it takes a while to get used to it, some days I don't even wear mine because I can't tolerate the lower hiss but wear it on higher tinnitus days to down it out.

I think it's easy to blame to Gamma Knife procedure for certain issues that arise but it's really difficult to tell whether it's that or something else like the natural aging process that's causing it.

Hopefully we find complete peace one day here on Earth and if not, I'm sure we'll have it in the afterlife.

All the best!

 

@Guywithapug, just curious regarding what you wrote about TMD and Botox somewhere else on the forum. You seem to have good experience. You said:

I have TMJ, well technically it's TMD but anyway I get Botox injections in the jaw a couple times a year and it helps a lot.​

Does it affect your tinnitus in any way too? Positive? Like a synergy effect of more relaxed jaw muscles/masseter?

I had a session with my neurologist today, and we are thinking of giving me an injection of Botox. I had TMD, but more tingling sensations, on/off, as of lately. She thinks I might respond good to this. I have many of the same symptoms as you btw.

No adverse effects for you?

 

I've had 3 rounds of injections to date, spaced about 4 months apart. The first time I got Botox, the next day was a quiet day for me but was short lived as it got louder the following day. So I didn't associate any positive change with the treatment.

This last time around I got Botox and Dysport a week later, I needed more in the temporalis muscle and it really helped ease the tension. Lately, I've had quiet a few lower hissing days, which is great, and most of the TMD symptoms have subsided.

My dermatologist informed me the longer you get Botox the more the muscle will relax on its own, which is my goal since I clench my jaw so much during sleep. Long story short, no side affects and I highly recommend either Botox or Dysport for TMD in your masseter and temporalis muscles. You'll see results in a few days.

Hope this helps.

 

Appreciate your feedback @Guywithapug - that helps a lot.

I read a few studies too that has me convinced to try it out. My neurologist believed I could have a good effect from the injections.