It's been a while since I last posted, but that's the way it goes when treating these slow growing tumors. It takes a long time for data and results to become measurable. Because most threads in support forums tend to be bad and make people think the worse, I wanted to follow-up with my current status.

In recap:

I was diagnosed with a vestibular schwannoma (acoustic neuroma) in December 2022. I had symptoms going back to May of 2019. Symptoms were intermittent hearing loss, really bad tone distortions, and tinnitus; all of which would suddenly get better such that I would have perfect hearing after a few weeks. Wait-and-watch approach wasn't going to work because my tumor was growing slightly faster than the average rate (1.2mm/yr). I decided to have Cyberknife treatment in early 2023. First post-scan MRI/contrast was early 2024. Tumor was still growing and was likely caused by post-radiation induced swelling. My hearing was cutting in and out with horrible tone distortions a lot over for about 6 months, which really had me thinking the tumor was just getting bigger and causing more issues. For example, one day I'd lose most of my hearing in my right ear, then a couple days later, it would come back. Then a few days later I'd lose hearing again, then it would come back. It did this repeatedly for about 6 months. Listening to music wasn't enjoyable because it sounded out-of-tune in my right ear. These symptoms produced a lot of anxiety, and I sort of wished I'd just go deaf in the ear for stability. Then, about 7 weeks ago, I stopped having hearing issues. The hearing came back and stayed. The tone distortions are almost entirely gone. This was encouraging.

Last Thursday I went in for my 18-moth post-radiation MRI/contrast scan. The tumor is dying and is now smaller than it was at the 1-year post-radiation scan. It's somewhere around 8mm x 6mm. The doctor thinks it'll probably shrink a bit more, maybe even down to the original size at discovery (6mm x 4mm). More importantly, my hearing in the right ear is now nearly perfect. I don't even fall into the "mild" hearing loss range anymore. The tone distortions are almost entirely gone as well. If I really try hard, I can barely detect it, but listening to music is once again enjoyable. I do have a very low-end tinnitus, sounds almost like a lower whirring noise. It's only noticeable when it's very quiet. Sounds kind of like a washing machine motor running behind a closed door, three rooms away.

I'm the very strange case in that my hearing would come and go. Most people that have an AN lose their hearing and it never comes back. This has sort stumped the two neurologists I've been seeing such that they can only offer theories on what's happening. It's not totally unheard of, but not normal. In my case, the theory is, since the tumor is very close to the cochlea, it's possible the swelling is/was causing irritation inside the cochlea. For example, swelling induced fluid buildup inside the cochlea. When the fluid goes away, the hearing comes back. Sort of like the symptoms of Minieres disease. As a result, the neurologists have put me on a long-term diuretic to see if that helps keep my hearing stable.

The next scan was supposed to be in December, but they said there's no point. Their confidence has soared since the 1-year scan, so I don't need another for 12 months (summer of 2026). He said surgery would be extremely unlikely at this point. As for my hearing stability, he just doesn't know. It's still possible I could have issues for the rest of my life, to include the possibility of losing all my hearing in the right ear. Only time will tell, but as I mentioned couple years ago, I will not let this stop me from living life. I refuse to let this situation consume me, which is why this will be my last post until summer of 2026.

As a reminder, radiation does not eliminate or remove the tumor. It will always be there. The goal of radiation is to slow or stop the tumor growth (stabilize it), with the optimal goal of shrinking it a bit. So, I don't think my journey will ever come to an end, but for now it looks like the "pause" button has been pressed.

So, unless something changes, I'll post again in the summer of 2026.

NOTE: For those wondering about my radiation treatment experience, it did not cause any facial nerve, trigeminal nerve, vestibular nerve, or auditory nerve damage that I can tell. I never had facial muscle spasms or tingling after the treatment, for example. No balance issues either.

I know you are not saying anything about surgery as an option, but remember that the doctors have to tell you worst case scenario.  The potential advantages are also great.   I had surgery less than 3 months ago and I am so much better than before.   Just last week started running again and training for a 5k.   Before surgery I couldn't walk straight.   I was more worried about the potential side effects from radiation than I was from surgery.   And the number of stories of cyberknife either not working or only being a temporary solution and the tumor growing again. 

Thank you, Michelle. It's a frustrating article. The finding that tumor size was smaller after 4 years with radiation did not surprise me, but was not what I was really interested in. I wish I could find better information on the hearing, facial nerve, and balance  outcomes between radiation and watch-and-wait over time. There is very, very little on that.

Heidi,  Sorry you are here but welcomed.  I left watch and wait about 2 years ago September.  I lost hearing and have tinnitus, that was how it was discovered.   You can see my journey below.  To answer your question, yes I would reach out.  We are out best advocates and we need to be proactive. like Ellen said who cares what they think.  Be proactive.  I am not a doctor but if it was me I would look in the radiation as an option.  Please inform yourself of this possibility. Good Luck on this journey

Hi! I am also in watch-and-wait with another MRI scheduled for the fall. My symptoms have intensified a bit, especially the tinnitus and I now have some headaches that may be related (although it is hard to tell as I have had migraines most of my life.)  I know that increased symptoms do not necessarily mean increased tumor size, BUT

with the amount of symptoms you are having and the intensity of them, I would contact either or both doctors and ask them if they indicate that there should be a discussion about changing the current treatment plan. I have found that emailing, if available, works better. If I were emailing both doctors, I likely would include that information but only if I had had enough contact to know that they would not assume the other would answer.

I have learned over the years with other situations that you have to advocate for yourself. No one will check up with you--and if they are annoyed, too bad.

Ellen