newly diagnosed and trying to get all the information I can

[cfinn]

I’m trying to get my head around having the words tumor and my brain in the same sentence. I seem to do better if I just think of it as an acoustic neuroma (which sounds like it might be a fancy and expensive guitar).

My MRI shows an 8mm left intracanalicular acoustic neuroma within the left internal auditory canal that does not protrude into the cerebellopontine angle. I realize that this is a small tumor and I’m hoping that wait and see will be the best approach for me. However, I suspect that it may not be a simple decision.

I have some hearing loss in both ears, but though the right ear has remained relatively stable since my first testing in 2011, the left ear has gotten progressively worse, particularly in the last year. I experience tinnitus in my left ear which has also gotten much worse. This progression of symptoms makes me think that the AN is growing, and possibly a bit faster than usual.

I'm glad I found this site, It's good to have someplace to talk about it.

Carolyn

[ANSydney]

Hi Carolyn. Welcome to the club that nobody wants to be a member of, but everyone is friendly.

With regards to size, wait and see will undoubtedly be recommended. However, you also need to look at symptoms - are they bearable?

An AN typically has hearing loss in the higher frequencies, rather than across the boards. Does your hearing test show a flat response up to about 2 kHz then drop off in the left ear?

How long have you had the symptoms for? Suggestions are if symptoms have only started, then growth is more likely. Stangerup found now growth after four years after diagnosis ( http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf ). He also found that growth typically slows with time. Some have had growth after 4 years, but its rare.

Over two-thirds of tumors don't grow (number varies from 50% to 90% don't grow). A lot of this difference depends n whether you take grown as >1, 2 or 3 mm.

[Citiview]

Cfinn
A great way to gather info is by utilizing the resources of the ANA. If you are a member you can listen to the webinars and the written materials are excellent.
One thing to understand is that the tumor can destroy hearing even if it's not growing. Once hearing has started to decline it will further decline, sometimes rapidly, sometimes slowly over time.
Recent research has shown that some tumors have excretions that may be responsible for hearing loss while other tumors do not. If you are interested in possibly saving the remaining hearing then perhaps get an opinion regarding middle fossa surgery at a top institution.
Watch and wait is fine, but your hearing may further decline during observation.
Only a few centers do middle fossa surgery.
The greatest factor in success of treatment is the experience of the medical team.
Look for doctors who have a great amount of experience with acoustic neuroma.
It's a rare disease so there aren't that many places that qualify as high volume centers for acoustic neuroma.
That being said, all of the treatment decisions are personal and one should conduct their own research and find comfort in their own process and decisions.

[ANSydney]

If hearing preservation is the main goal: https://pdfs.semanticscholar.org/2cef/abe8e8eef1ae32cab8bcf3c71dd75f53387c.pdf

"In the literature, to our knowledge, there have been no reports of the hearing preservation after 10 years or more after hearing preservation surgery or radiotherapy. In the present study [no active treatment], 95 patients had been observed for 10 years or more. According to the AAO classification, 46% maintained good hearing after 10 years or more compared with 45% using the WRS classification and 75% of patients with 100% speech discrimination at diagnosis."

[Citiview]

ANSydney
That paper is an important reminder that even if hearing preservation surgery is successful, hearing may nevertheless decline or be lost in the future.

[ANSydney]

Yes Citiview. Sometimes we need to keep clear what the objective is.

[Citiview]

Patients will define for themselves their own objectives for treatment based on their own sensibilities.

[ANSydney]

I agree patients will define for themselves their own objectives for treatment based on their own sensibilities. Unfortunately, the "evidence" is disparate. Some papers will tell you one things, others quite the opposite. How do we differentiate between the reliable information and the not so? You get reported natural growth of between 5% and 50%, shrinkage of between 1% to 22%, good hearing preservation following gamma knife and no hearing after 10 years.

[Citiview]

I agree patients will define for themselves their own objectives for treatment based on their own sensibilities. Unfortunately, the "evidence" is disparate. Some papers will tell you one things, others quite the opposite. How do we differentiate between the reliable information and the not so? You get reported natural growth of between 5% and 50%, shrinkage of between 1% to 22%, good hearing preservation following gamma knife and no hearing after 10 years.

I've gone through this kind of a process before of having to gather information and seek different medical opinions. Sometimes for myself or for my children. What I've learned is doctors will have different opinions and interpretations. Institutions will have different philosophies. It can be frustrating. I think we all want everything to be simple and easy to solve. This disease is rare so it's even more difficult to get consensus. Sometimes narrowing the focus to a certain institution and doctor team and their own institutional stats might help. That may be easier for those of us here in the United States because we are closer to the institutions that are talked about frequently. It's hard to advise when someone is outside of the US.

Different research will have conflicting findings because each study will have limitations. Although it's good to look at studies you have to be careful about interpreting them or coming to conclusions based on one or a few studies. Even doctors in this field have called the body of literature controversial and difficult to interpret, so it makes sense that it would be difficult for the patient to be sophisticated enough to make interpretations.

Maybe listening to the success stories that keep coming out and finding patterns of success with doctor teams will help.


Wishing you luck ANSydney and of course everyone else too.

[ANSydney]

"Even doctors in this field have called the body of literature controversial and difficult to interpret". It is difficult to interpret. but it's in English and and easy to read. It then requires thought about what it means for you. You, the patient, will spend much more time than a doctor is willing to commit to understanding it. Much more time.

Thanks for the well wishes Citiview.

[cfinn]

I appreciate the thoughtful replies to my post. I have an appointment with a neurotologist in about 2 weeks. He appears to be well acquainted with AN and did a fellowship at House.

I've been giving a lot of thought to  what I would like to have as an outcome. I've had (and have) a number of medical issues over the years and always before, once I got sufficient information the proper path was fairly clear. With AN that is just not the case. I realize that I will have to make a treatment decision at some point (or a non-treatment decision) but I am not going to even try to get close to that right now. Next is see the doctor. One step at a time.

[KeepSmiling]

You'd be surprised at how rarely Proton Therapy is discussed here at the forum. It really seems as though there definitely is a bias at the forum. If you want all the info, read about proton therapy.