a newbie

[joyce04]

Just diagnosed with a 1.5 cm AN...anyone have good advice for someone in New England?
Other than hearing loss, no other issues for now....

[john1455]

A 1.5 cm AN is considered to be medium size and you have all 3 options to ponder over. The first thing, if you haven't already, is read all you can about each option and see which one fits you. No one on this forum will tell you which option to choose because that is a choice only you can make, but the experiences of others here will definitely guide you in your decision. The obvious thing to do initially is nothing, aka Watch and Wait. That entails monitoring your AN for possible growth with annual MRIs. ANs are supposed to be very slow growing and some do not grow at all, but then ANs are also supposed to be rare so why do many of us have them?

Some things to keep in mind are: if you develop symptoms like disequilibrium (balance issues), tinnitus, more loss of hearing, etc., they will not likely go away even after treatment, whether it be microsurgery or radiosurgery. That is the disadvantage of W&W; you can be almost symptom free now but may develop symptoms at any time in the future and once you have them, they will probably remain with you forever despite treatment. Another factor complicating things is one's symptoms and how severe or mild they are have no bearing on how large or small the AN is or whether it is growing or not. This is why MRIs are so important as a tool in monitoring ANs for growth. Once growth has been confirmed, ANs can be life threatening (brain stem compression) and treatment is a must.

If you want the thing out of your body, then surgery will accomplish that in most cases. But surgery is the most invasive option and carries with it the most side effects and will affect your quality of life the most. Read what posters on this forum had to go through with their option choice. Radiosurgery (CyberKnife or Gamma Knife), on the other hand, will have the least impact of the quality of life but its long term effects (30 to 40 years out) are unknown. The goal of radiation is to stop growth and if the AN dies (aka undergoes necrosis), then that's an added bonus. You Tube has a ton of information on each and every option so check that out. The amount of information out there is overwhelming but don't let that overwhelm you. You may even become confuse at times but the more you read, the better it gets, hopefully, and this site is a great place to get answers to any questions you may have.

[joyce04]

Thank you so much for this information.  It is greatly appreciated.  I am more concerned about the side effects
of surgery, but am not rushing into anything.  I read there are only 2,000 to 3,000 diagnosed a year---curious how many
people go undiagnosed??

[rodneyd]

Hi Newbie,

You asked how many people have AN's that aren't diagnosed, and I am willing to venture that it is quite a few.  One lady in our AN support group was only diagnosed because she was in a severe auto accident and her fairly large AN was picked up on her MRI scan.  She had no symptoms and no knowledge of what an AN was.

When I was diagnosed in October, 2013, my only symptoms were a loss of balance that I had been experiencing for several years.  Finally went to see my family doctor and she sent me to a neurologist who ordered the MRI with contrast that discovered my AN. 

I went through several decisions -first I wanted surgery to get that bugger out - then moved on to radiation and finally to W & W.  What a roller coaster ride of emotions that was.  I was very comfortable with the radiation therapy until I found out that I would become deaf in the treated ear after 2 - 3 months (due to radiation killing the cilia in my cochlea).  Currently, I have some decreased hearing on the AN side, especially in the high ranges, but have about a 95% word recognition, so not too bad.  So, I asked myself a question - why would I want to go through either surgery or radiation that would make me deaf in that ear, when I can wait and deal with the balance issues.  If I start losing my hearing, then I can always choose one of the other two options. 

That was in January, after an MRI that showed no growth in the AN for the last 4 months.  Another in July, showed no growth as well.  So far, my hearing has been retained and I am happy about that, because my wife and I are avid square dancers and I need to hear the music and the calls in order to function properly.

I think my experience also points out that the decision is always up to the individual involved and everyone is different, so the decision must be one you are comfortable with.  (At first, my wife was decidedly not happy that I chose this route of W & W, but now she sees the value in it, so I am glad I went with my gut and not her concerns).

Much good luck on your journey, there are lots of wonderful people on this forum who will give you maximum support and information.  There are also a few with their horror stories, but I always think positively, so if I did go for the radiation or surgery, I would expect a good outcome, regardless of what other's have experienced.

rodneyd

[joyce04]

Does the baby aspirin slow the growth of an AN?

[rodneyd]

Hi,

There was an article in a recent ANA newsletter that suggests one baby aspirin per day retards growth.  I have been taking them for a couple of months now, as there doesn't seem to be much harm in it.  Will really know on my next MRI which is several months from now.

rodneyd

[ampeep]

Joyce04

It may have some benefit to some people, but I've been taking a baby aspirin daily for years, but it didn't stop my AN growth.

Based on ANA surveys, a majority of people here opt for surgery.  I fwas surprised because my neurosurgeon said he rarely performs surgery on small/medium AN anymore.

ANs are located at the base of the skull, so they go through your ear canal or open your skull to access it.

Good luck in your search for info; I found this site to be especially useful.

Keith