Glad to hear all is going well for you.   We have never met and we probably never will, but I feel like I know you from all the posts and updates over this past 2 years that I have been on here.  I hope you have many more good years ahead of you, and look forward to more positive reports. 

Life is great!

Three years ago, I never would have imagined I’d be writing this. At the beginning of this journey, I was scared, uncertain, and wondering what life would look like on the other side.

Today, I can honestly say that life is pretty darn good.

I’ve come to an understanding with the SSD and tinnitus. They’re simply part of my life now. I’ve learned to adapt, find the humor in things, and keep moving forward. When we go out with a group, I get to assign the seating locations. There are always a few people I place in the “dead zone.” My wife is getting used to it. 😊

The tumor shrank a little on my MRI in April, which was encouraging. My ENT wants to evaluate me for a hearing aid this December. I’m not sure how much it will help, but I’m willing to give it a shot. I do the Delta test and use their entertainment system. With the volume fully cranked up, I can hear a little in the bad ear. I’m not expecting a miracle from the evaluation—although I’m pretty sure I’ll get a bill! 😂

Three years post CK and 2½ years post open-heart surgery, I’m a happy camper.

We’re going to hit almost 90 days of traveling this year. We’re also now grandparents, which is absolutely awesome. There are moments when I stop and think about how far life has come, and I’m incredibly grateful.

I’m sharing this for those who are just starting their journey and are scared. I was scared too. I remember what those early days felt like—the uncertainty, the questions, and wondering what the future would hold.

But here’s what I’ve learned: keep moving forward, one day at a time. You may not know what life will look like a year or three years from now, but there can still be so many good things waiting for you on the other side of the fear.

This group gave me strength when I needed it most. The experiences, encouragement, and support from people who understood what I was going through made a difference in my journey.

So to everyone here who is still in the middle of their journey: hang in there. Take it one step at a time. There is life after the diagnosis, and there can be a lot of good life to live.

I’m proof that the road may not always be exactly what you expected, but it can still lead to some pretty wonderful places.

I truly thank you all for the support you gave me—and continue to give others.

And please don’t tell my heart group, but this group may be smaller… but it sure is a whole lot more supportive. 😊

Thank you all,

Dan

Hi Folks,

Agreed tinnitus sucks. I am trying a new device called a Vibe made by Resound, which claims to help, but I'm only three days in, and no progress yet. it came with a 30 day money back guarantee, so am giving a whirl, fingers crossed. I'll certainly post if it works! Meanwhile, if you don't know about Lenire, my ENT doc suggested it, and it is FDA approved for tinnitus. Kind of pricy, and you need to get to one of their clinics, but maybe worthwhile?

Carrie

Ashman-
I read your post and felt like I could have written it myself. I was diagnosed with right side AN in Jan 2025 and had been having disequilibrium, balance issues and what I refer to as "fuzzy brain" sensation for over a year. Finally, I convinced my ENT to do an MRI and there it was. I then started vestibular therapy for 4 months and it worked magic. I felt so much better. I continued doing the home exercise program my therapist prescribed and the nasty symptoms went away, though my hearing continued to decline. Unfortunately, the tumor continued to grow and I told my neurotologist I really did not want to have surgery. I think because of that, he recommended I not wait and do radiation. I had 5 sessions of cyber knife in May 2026 and other than feeling tired, came through it feeling OK. Then about 6 weeks later, all of the imbalance and "fuzzy brain" issues come roaring back. I am now back in vestibular therapy but do not seem to be making any progress yet. I am hoping it will start to kick in like last time and I will feel better. My MRI is not till November. I would be curious to hear if others have had this experience after radio surgery and what may have helped.

Hi, i received Gamma Knife back in 2021 and since then growth has stopped and even some minor shrinkage has occurred. So i'm at the point where i'm considering a Cochlear Implant. I begin the evaluation/qualification process this week at NYU.

I'm hoping some of the Cochlear Implant recipients can share their experiences here whether they be positive, negative or deep regrets.

I have some balance issues already and i'm concerned the implant could worsen my balance or even potentially cause vertigo. 

Thank you!