Had hearing test today

[mindyandy]

I had my hearing test today. Like usual it is good??? I have an AN in my R-ear but my hearing is good in both ears? The lady that went over my hearing test today did not know that I have an AN. She sat down and said your hearing is great. I told her that is strange since I have a R-AN that is 17mm. She asked to see my MRI report. I had it handy so I showed her. She asked what my sx are and so I told her that I really didnt have much other than loss of taste for a few months when dx. I did at first have some ear issues but nothing since. She was amazed. I told her the only thing now is that I developed TN on that side. It hurts to eat and it hurts my tongue on that side too. She is wondering if I even have an AN. She is wondering if its a TN or Facial neuroma??? Now I am left wondering

[mk]

While it is uncommon not to suffer hearing loss on the AN side, it is not unheard of. When I was diagnosed with my AN, which was much larger than yours (2.8 cm at diagnosis), my hearing was perfect. So,  it had been growing for all these years,  without causing any hearing problems. My only symptom was some burnt feeling on the tongue, and facial numbness. One of the doctors did question if it was an AN (versus a meningioma), but sure enough it did turn out to be an AN. Unless these are surgically removed it is hard to tell them apart (i.e. facial, versus trigeminal vs. acoustic neuroma, and meningioma), as they all look similar on the MRI. Generally they cause similar symptoms and the way they are treated is similar too. Facial neuromas are trickier to treat, because of the facial nerve involvement. They tend to cause facial twitches, and other such symptoms, which doesn't seem to be the case with you. We did have a member with a trigeminal neuroma, MAlegant; I am not sure how hers was diagnosed.
I hope this helps, don't get too caught up with what kind of a neuroma it is, it most likely doesn't change anything.

Marianna

[mindyandy]

Marianna
Thank you. You are right. I shouldn't worry about which neuroma it is. I guess that I am just very nervous that surgery may be in the near future. I'm still sitting on the fence about this. Where did you have your surgery done?

[mk]

Mindy,
After many consultations and tons of research I ended up flying out west to have surgery with Dr. Akagami, in Vancouver, Canada.
As you see from my signature, I have been in your shoes and know exactly how you feel, only that my situation was more urgent, given the size of my AN.
My advice is to research all your options, since you have plenty of time. If I remember correctly, Dr. M. advised you to wait for another MRI - this gives you plenty of time for research. In my opinion surgeon experience is of outmost importance when treating previously radiated tumors. Don't listen to those who say that it is more likely to have a bad outcome for a radiated tumor. We had quite a few cases here with very good results in the hands of experienced teams.

Try to relax and enjoy your holiday - you can't control how your AN will behave, but you can certainly try to figure out the best treatment option for you.

Don't hesitate to PM me if you would like more details about my experience.

Best wishes,
Marianna

[mindyandy]

Thank you very much. Yes Dr. M did say wait 6 months. I worry because I have TN pain which I am not able to take meds for due to hypersensitivity to them. I also worry because my work talks about lay offs constantly and I worry I will loose my insurance.

[alabamajane]

Hi, I too had very good hearing on AN side,, my only symptoms to begin with were subtle tinnitus but as it progressed over about 3 yrs,, it grew (2.8cm at surgery in Oct) enough to press on my brain stem and cause headaches and I too experienced the numbness on tip of my tongue all the time and some slight facial numbness. It ended up being involved with my facial nerve and it had to be severed.. not to scare you,, just to let you know hearing is not necessarily an indicator of the AN.. I had translab surgery so am SSD now,, kinda a shame since I had such good hearing.. but OH WELL.... I am getting used to it...
I did not have any radiation treatments though... Good Luck with yours and just enjoy the Holidays right now and keep researching..The insurance issue will definitely be something to consider..

[mindyandy]

Thank you for sharing your story. I HEI cotacted my insurance company and I am in their network. I only needed a referral. Which is not an issue. I am working right not on sending Dr. Friedman my scans, auditory report and a brief description. I am doing this to cover all bases. I am not rushing. If things were to happen it would be a few months out still.