Introducing Myself, just diagnosed

[Tumbleweed]

Oh-and I heard from the ENTon the way to the hospital one morning.  I called him because I had not heard the results of my ABR hearing test. He did get back to me-He told me that according to my ABR, I would lose my hearing from surgery or treatment. 

Millie, I don't know the particulars regarding your AN (size, location, etc.), but it's possible that radiation might save your hearing. I say this because my ABR test results also suggested I would lose all my hearing on my AN side if I had surgery. (6 out of 6 AN specialists I consulted with concurred I would be SSD.) So I chose CyberKnife (CK) radiation treatments. Almost 4 years now after treatment, I still have very useful hearing on my AN side.

One of the doctors who recommended I have radiation instead of surgical resection was Dr. Derald E. Brackmann. He is a famed neurosurgeon at House Ear Institute. He usually recommends surgery for treating ANs, and he doesn't personally practice any form of radiation therapy. But because my ABR test -- which he impelled me to get while I was in W&W -- returned such poor results, he recommended I avoid surgery and have radiation instead so that my hearing might possibly be saved. (He recommended GammaKnife, but I chose CK, which is very similar.)

Your situation might be different than mine with regards to radiation being a viable alternative. But if you are concerned about preserving your hearing, it would be worthwhile to consult with a couple radiation specialists to see if they think radiation might save your hearing. And a second (and sometimes a third) opinion is always a good thing when it comes to such a major decision as treatment for a brain tumor.

Best wishes,
TW

[millie]

Thank you, Tumbleweed-
I think next week, I will ask another ENT about a possible hearing test (ABR) and then his opinion/recommendation, as you have suggested. I also could have the results of the April ABR sent to another NYC ENT.  This is on my to-do list for next week.
 It sure would be nice to get that hearing back although I am getting used to this.  When I hold my good right ear closed, I can see that my AN left ear really has very little hearing left.  I don't know if that could be brought back.
Today my husband has his doctor's appt. following open heart surgery, so I will check in on Monday with you guys!
Thanks for everything.
Millie

[Tumbleweed]

Hi, Millie:

Since an ABR test is usually only performed once, I suggest you simply send a copy of your recent ABR test results to any doctors from whom you plan to seek a second or third opinion.

Sorry to say, your hearing is not likely to recover on your AN side. But it's (remotely) possible it might, if only partially.

Best wishes,
TW

[millie]

Thanks Tumbleweed.  One ear is all I need!  As long as it works.
I also am wondering if the dizziness and cloudy feeling may leave after treatment.  These feelings are intermittent, but definitely there in the last months.  I am gettin used to the feeling of fullness.
Millie

[Tumbleweed]

Some people report more or less completely regaining their balance. In my case, I regained about 80%. But I still have mild disequilibrium ("wonkyhead"). For example, I can't keep my balance when standing on one leg with eyes closed, whereas I used to be able to do that before my AN symptoms began years ago. About 25% of CK patients at Stanford U reported their balance improved after treatment.

The feeling of fullness should eventually go away after treatment, but nothing is ever guaranteed when it comes to ANs. Everyone's recovery is at least slightly different from that of others.

Best wishes,
TW

[millie]

What a great thing to look forward to!  The feeling of fullness gone!  Thanks, Tumbleweed, for your advice.
What is a hypoglossal that you have been  diagnosed with 12/28?  How are you doing?

[Tumbleweed]

A hypoglossal schwannoma is similar to an AN, just in a different location (on the hypoglossal nerve instead of on the vestibulocochlear nerve, as is the case with an AN). It's also 100 times more rare than an AN, affecting 1 in every 10 million people. I have had no symptoms from my hypoglossal schwannoma to date. Like the facial nerve, the hypoglossal nerve is a motor nerve which is very resilient. In my case, the tumor has not grown over the past 4 years (since it was discovered). So unless it starts to grow again or I start getting symptoms (for example, having trouble moving my tongue from side to side), the best course of action is W&W. The only bummer (besides having the damn thing in the first place) is I have to get an MRI series taken every year to make sure it's not growing. Otherwise, it doesn't affect me. I don't think about it that much.

Best wishes,
TW

[millie]

Thanks Tumbleweed!
You have had quite a journey. 
My thoughts about the annual MRI are the same as yours-what a pain to have to do that every year.  In fact, just yesterday, my  daughter, just 42,  said she is so tired  of doctors, her own tests and the stress  they bring.   But  another scan like the MRI is just something else we must do to safeguard our quality of life. 
Stay strong and thanks for sharing.
Millie