New here - considering surgery options, etc. could use advice, etc.

[Abonillo]

Hi all

I'm new here - so glad I found this forum. I am 40 years old and I was diagnosed with AN about 3 plus years ago. I had just undergone a series of tests including an MRI due to my frequent complaints of dizziness. I have ringing in my ear for years but as a musician, sadly I had not noticed. At the time I began meeting with my neurosurgeon we went on the "watch and wait" method as my AN was well under 20 mm . . I recently had another MRI done which showed it grew fairly rapidly in 2 years time and now at roughly 23mm it's time to talk treatment. my doctor suggests surgery over gamma knife but he will support my decision to choose gamma knife although he believes that since it works slowly and my AN may be growing somewhat rapidly I'll wind up with surgery anyways. . . I'm actually seeing him Friday to talk more about this and think of timeframes etc for when to get surgery done if I do. Although gamma knife sounds easier I fear what radiation could do to me in the long run. . Surgery, although very frightening as I've never had any type before let alone to my head/brain, does sound more natural. . so I guess I'm just here to ask others what led them to decide surgery over gamma knife if was a choice in your case? can surgery really save what is left of your hearing? and will I really be okay after all this?
the last time my hearing was tested was about 2 years ago and I was told it was fine.  . now I find it is still starting to go on the AN side. Not terribly bad but if this could possibly preserve what's left maybe surgery is the way to go.
anyways thanks for reading!! I look forward  to taking part in discussions and I hope my experiences thus far can help others in some way

[KeepSmiling]

Consider Proton Therapy. For my husband it has been a very good choice. Best of luck to you!

[michellef08]

Hi Abonillo,
I was 27 when diagnosed, so all of the specialists I saw only recommended surgery due to my young age. As you mentioned, they do not know what the effects of radiation will be in a few years, so it was basically out of the question for me. Although I didn't really have a choice, I liked the idea of surgery  because I could get the tumor removed and move on with my life. I know only have to get an MRI every 5 years, but other than that, I am living my life completely normally and worry-free.

My advice would be to see as many specialists as you can, until you can make a decision that feels right for you. Make sure to seek the advice of specialists who are very experienced with AN. Have you sent your MRI to House for a free consult? https://www.houseclinic.com/consultation/acousticneuroma . I would highly recommend hearing what they have to say, no matter which option you are leaning towards. I believe other clinics provide the same service as well (USC, Stanford).

As far as surgery goes - yes, there is hope to save your hearing. I only had very minor hearing loss pre-op, and my hearing has not changed a bit post-op! It depends what approach you are a candidate for. I had Middle Fossa which has a higher chance of saving your hearing, but I believe it is around 50/50 for retro-sigmoid? And yes - you will be ok after this. I am now 2 years post-op and it is very rare that I even remember that I had a brain tumor and surgery.
~Michelle

[Doc]

If you can get relief from a non-surgical procedure, ’I’ would go that route. Keep in mind, GK does have its downside. It’s important to do your homework, but in the end, your Doctor(s) know best. Based on what you’ve written, surgery may be your best option.

[TR4guy]

I have to voice a little bit of disagreement about Doc's statement of "your Doctor(s) know best."

I didn't have any problem at all finding a couple of different respectable surgical teams with different opinions as to which was best.

So which one of them was "My doctor"  and which one knew best?  (By the way... I actually ended up having surgery done by yet a different team of docs.)

I was in an AN support group meeting and found it fascinating to learn that there was a doctor in the group.... I think he was even a surgeon, and he opted to go for radiation.
If I recall, his tumor was larger than what is typically considered treatable by radiation.  He had very good results.  Why did he make that choice?  Did he know something that other don't?
Did he just not trust the skill of other surgeons?  (as in dexterity)  I wish I could have talked to him more.

House will give a free consultation.
If other places like USC and Stanford do it too... why not hear what they have to say.

And by the way... being SSD is really not THAT big a deal.  (I'm not a musician.. but then again... some musicians are damaging their own precious hearing with their music)