New member, symptoms questions.

[Mark F.]

Ok.  I've been reading posts on here for a while but this is my first.  I was diagnosed in 2022. At the time it measured 10x6x6.   I just had my typical 6 month MRI and as of 3/24/25 it is now 12x8x8. I have been wanting surgery since I was diagnosed, I am one of those people who just wants it gone.   Anyway, I have most of the typical symptoms, legally deaf in my left ear, balance issues, I've literally had a headache for over a year, it's always there just usually mild, and then gets worse at times.  But I have had some odd things pop up that I think are related, but my neurosurgeon claims is not.   One is recurring double vision particularly when I'm tired or at night which makes night driving really interesting at times, and the other new symptom seems really odd, at night only and not all the time, I struggle sometimes to say what I want to say.   I know in my mind what I want to say, but I have to concentrate way more than I should to actually say the words.   Several years ago I had a pretty bad concussion from a traffic accident where I bounced my head off the steering wheel and the air bag did not deploy, for two weeks after that I had this exact same issue.  Then it was from the concussion, now I am wondering if it is somehow related to the acoustic neuroma.  Has anyone else had this type of issue?  By the way, the issue is just in speech, when I feel like that I still have absolutely no problem typing an intelligent text.  I will be talking with my neurosurgeon on Monday and I really want to push for having the surgery soon.  As a background, I am 56, but other than this tumor I am in very good shape.  I have a very active job, and until last year when the balance started becoming more of an issue I was one of those people that ran 5k's every chance I could.  So my overall health shouldn't be a factor in weather or not to have surgery.   

[donjehle]

Thank you, Mark F., for posting your story on the ANA Forums.  Please keep us updated on what your neurosurgeon says on Monday.

Like you, I lost my hearing in my left ear and have struggled with balance issues.  And like you, I wanted surgery to have the acoustic neuroma gone!  But as years have gone by and my vestibular schwanoma has not grown, I have seen wisdom in waiting and watching.

However, in your story, you do have growth, so I will be interested to hear what your neurosurgeon recommends.

Best wishes on your journey!
Don

[Mark F.]

Your signature at the bottom says you were fitted with a CROS hearing aid.  Do you like it?  My ENT told me that was the only option that could work for me, but he said he honestly didn't recommend it because he said in his experience most of his patients who tried it hated it.  And he said the hearing in my right ear is very good so I am actually not missing much.   Just really quiet sounds on the left. 

[Jill Marie]

Hi Mark,  I haven't had either of your issues so I can't help you there.  I just wanted to say that the doctors don't know everything so it's possible your issues are related to the Neuroma.  I had my surgery a long time ago and the doctor told me I wouldn't be able to drink out of a glass after surgery, my left eye wouldn't close and my left eye would tear again after my nerve healed!  He was wrong on all 3 counts.  I hope your doctor is willing to listen to you and help you figure out if the issues are related.  Also, I hope you get your surgery soon so the headache, double vision & and problems with saying what you want to are relieved.  Let us know how it goes on Monday!  Jill

[Mark F.]

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. 

[Jill Marie]

Thanks Mark, we appreciate you keeping us informed.  Although I don't know you we have been down a similar path so we understand what you are going through better than some.  Therefore the Michael J. Fox quote makes total sense to me.  I hadn't heard the quote so will share it with others that would appreciate it.  Really glad to hear that you like and trust your surgeon, that's definitely a plus.  Jill

[skier]

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

[Mark F.]

Skier,

Thanks, for the hope that I'm not just losing my mind here.   I have said all along I wanted surgery, but as the time got closer the lack of a recovery period started making radiation look more appealing, till I talked to some people who went through that and ended up getting surgery anyway years later because the radiation either didn't work at all or the tumor just grew back anyway.   So I'm back to wanting surgery.   I feel at 56 I am still in pretty good shape and have a much better chance at a good recovery now than say 8-10 years from now.  I certainly hope that this period is the worst, I know surgery has risks and possible side effects, but I am so ready to start seeing improvement instead of new symptoms.  Whatever the outcome from surgery, I just want to know that ok this is where I am, no more guessing what's next.