I had my surgery at Vanderbilt in July 2022.  Brain tumors are the pits, but the Vanderbilt team was great.  We had discussed other places, but besides the good things we heard about the doctors, Vanderbilt was closest to home. I developed some post-surgery complications so I am glad that we chose somewhere we could easily drive back to for treatment.

I haven't used this forum in a while. I got too scared about my situation and stopped googling acoustic neuroma or using the forum. I am coming up on my 3 year MRI soon. I had GK for a 1.5 cm AN in 2022. Things were stable one year later in 2023. Early 2024 brought facial spasms and head pressure. I've been on a 6 month MRIs schedule since then. The latest MRI showed the tumor growth or hopefully pseudo progression plateaued and ventricles were stable. Some days I actually feel good and I'm so thankful. Other days my left ear throbs or my entire head feels like it's on fire and I feel pressure on the left side of my head. My MRI should be this month but I'm doing it in June instead because I'm hopeful it will decrease or stay the same size. I'm being stupid, right? I feel like it's ok to hold out hope for just a little longer but I am realizing my GK likely failed as the tumor has increased prior to the plateau. I thought I'd made the right choice with GK. I was proud of my choice. Since last year the ventricles are being watched and the tumor developed a cyst. I know the 3 year mark is a time when decisions are likely made. I have no idea how to handle my fear, my anxiety, and my disappointment. I'm so tired of living from one MRI to the next MRI. Life was not supposed to be like this. 

Ok. Here's the update.  After talking to the neurosurgeon today, we are moving forward with surgery.  I don't have a date yet, I was told I would have an appointment to meet the other surgeon who will also be a part of the team first, then we would schedule.

At first he started out saying watch it for another 6 months, but when I started telling him about the progressive issues I've had with balance, that's when he started talking about the risks and possibilities of the surgery, and he said he realizes balance issues are no joke and that we would proceed with the surgery instead of waiting any longer. 

I told him I was ready, and that I felt doing now was less risky than waiting because I'm not getting any younger, and isn't it easier on him to get it out while it's smaller?  To which he said that was true. 

So here we are, I am going to get my surgery, see where that leaves me, and hopefully after recovery start actually getting better instead of constantly getting worse.

Hi Mark,

I am sorry you are going through this. I have a couple of remarks related to your questions.

I definitely had some word-finding trouble in the two years between diagnosis and surgery. After surgery, it was better, from my perspective. I also had some odd stuttering, which was new for me, and which completely went away immediately after treatment. (Could it have been stress-related? Sure. I really don't know the cause.)

I don't think I ever even asked a doctor about those issues, and whether or not they were symptoms of the AN. I probably was just too overwhelmed at the time, by the balance trouble, hearing loss, twitching in my face and tongue "numbness".

My balance is nearly normal post-trans-lab surgery. My facial twitching and tongue issue also went away after the tumor resection. (I had a small-then-medium-sized tumor.)

Choosing either radiosurgery or microsurgery was difficult for me, at the time. Definitely super stressful. Only after I chose microsurgery with trusted MDs, did I start to have some emotional relief. And after surgery, I had much more emotional relief. If I could do it all again, I wouldn't have waited so long for treatment, but it's OK.

I had surgery at 65 yo. My age was not a problem. (See my other posts, if interested.)

Hope you receive good information on Monday, and I hope that you can choose a good plan that makes sense to your MD/team and yourself. I remember someone on this forum remarking that the time before choosing a treatment plan was the worst time. For me, that turned out to be true, too. Wishing you well.

Best,
Skier

I will update everyone on Monday.   Thanks.   For information sake I'll let you all know that my neurosurgeon is at John's Hopkins.  I live about 2 hours away from there, but I chose them because of reputation, and the fact that they have an Acoustic Neuroma department.  I really like my surgeon, I don't always agree with him, but I do trust him.   Like the Michael J. Fox quote, the real expert is the person going through it.  Even the best surgeon can't understand what it's like unless he has had it himself.