Why did you choose your treatment option?

[Andrew A]

I was told yesterday that I have AN.  My tumour is fairly small, with the biggest dimension being 12mm.  I am interested to know why people made the treatment decisions that they did.  I am 43 years old with slight hearing loss but otherwise no other symptoms.  My consultant (is this a UK term?) offered me three options:

1. Wait and see - have another MRI scan in about 9 months

2. Surgery (i.e. in through the skull)

3. Stereotactic radiosurgery

He explained to me that options 2 and 3 both involve some risk of hearing loss, facial paralysis and/or balance problems, but that these risks are less with the radiosurgery.  The standard surgery also has the obvious complications associated with invasive surgery performed under anaesthetic.

Given that the tumour is likely to either grow very slowly or not at all, then, personally I cannot see the benefit of taking the risks associated with either type of surgery.  This seems to be my consultant's view as well.  If, in a year or more's time, my tumour has grown, then I may need to do something, in which case stereotactic radiosurgery sounds like my preferred option.

Obviously the news is a bit of a shock but I am keen to understand why other people have made the decisions that they have about their treatment.

Thanks for your help.
Andrew

[JHager]

Andrew,

Compliments on your approach!  It seems you're already started down the road towards making a good decision for yourself.

I was diagnosed in August with a 3cm right AN.  I did the research, talked to the docs, and decided that surgery was my best option, particularly because my tumor is starting to press against my brainstem.  I'm having the AN removed via translab on November 7th, here in Las Vegas.

Personally, I would take your approach, given your tumor size.  If you aren't experiencing too many symptoms, or they aren't bothering you, then waiting and watching makes sense.  However, I might request my follow-up MRI a little sooner, something like six months from now.  As you read through this website, you'll find numerous instances where tumor growth occured very rapidly - you'll want to stay on top of things on a regular basis.

If the tumor grows, or your symptoms worsen, then it's time to figure out your best treatment option.  I decided that radiosurgery wasn't for me, although I did find information that even my large AN could be treated with radiation.  You'll have to find the solution that's best for you.  Do the research (try the House Ear Clinic's website for info on surgery, and try the University of Pittsburgh's site on information about radiosurgery, for starters), talk to specialists and both, and choose what makes you the most comfortable.  There are risks either way, but remember: the procedure is truly saving your life.

My hope is that you can watch and wait until you're 100 years old.  However, I would starting getting prepared for other options now, so that you're not scrambling later.

Good luck, and please keep us posted!

Josh

[jamie]

Hello and welcome Andrew,

Sorry to hear you're in the position that you have to join our little online community. 

I chose radiosurgery for my 2.3cm schwannoma (lower cranial nerve). I chose that option because I felt at 28 I'm too young for brain surgery. Also, surgery to resect lower cranial nerve schwannomas (glossopharyngeal, vagus) is more complicated and more likely to result in nerve damage. I did alot of research on radiosurgery as well as microsurgery. One unfortunate thing you may encounter when weighing the options, is that there are alot of myths and misinformation in regards to radiosurgery. Make sure you speak with providers of both treatments, be wary of the opinions of surgeons who only do neurosurgery, and vice versa.

I had radiosurgery by CyberKnife a little bit more than a month ago. Before the procedure my tumor mainly caused me earaches/headaches, but no nerve issues. Since my radiosurgery the pain I had is completely gone and I feel great. I lost a few dime sized patches of hair, but I can already see it starting to grow back, I shave my head usually anyway, so the hair loss wasn't really noticeable.

Hopefully your tumor won't grow and you won't have to make a decision, but if it does be sure and do lots of research. This site has alot of good info on both treatments. Good luck!

Jamie   

[Sheryl]

Hi Andrew - sorry  you had to find us this way, but at least you did and the people here are wonderful.  My tumor (called a schwannoma) was found incidentally after a bad headache.  The neurologist said - more than likely nothing, but let's do an MRI - WOW  what a surprise - you have a brain tumor!!!  It took me a long time to say the word "tumor" - I would refer to it as a growth or the thing in my head.   The headache turned out to be blood pressure related.  My tumor is a little different than an AN as it is on the 9th cranial nerve (rather than the 8th) which controls gag reflex and swallowing.  That was back in November of 2001, and I have been a "wait and watch" patient since then.  The tumor was 9 mm at the time it was found.  I had a follow-up MRI in three months with no change and then six months and now I am on a yearly basis.  You should ask for an MRI sooner. Also ask if it can be read by a "neuroradiologist".  Since my first MRI, the doctor said my tumor has increased to 12 mm (an increase of 3 mm over 4 years).  Luckily I got friendly with the neuroradiologist in the hospital where I work and can get my results immediately, plus he's been extremely helpful and confident in my course.  1 to 2 mm increase is supposed to be very minor and some doctors totally discount it as growth - could be a different MRI machine, different technician, or maybe your head was just off 1 mm in the machine.  In my case, it is not pressing on the brainstem and I have no symptoms.  It is so close to the 8th cranial nerve that I do think it is causing my tinnitus in that ear only plus sometimes a feeling of fullness, but nothing that I cannot live with at this time.  When and if the time does come, I will probably go the radiosurgery route.  I've recently been treated for breast cancer (no relation to my head) and my husband had surgery for a benign brain tumor called a meningioma - so we've had enough surgery for awhile

[cookiesecond]

Hi Andrew,
This group is a great source of information and support. I chose the translab approach because I had lost most of my hearing on my AN side. I also suffered from nausea, dizziness and headaches. The An was 3 cm and I felt surgery was the only way to get rid of the tumor.I know radiation can stop the tumor from growing and eventually kill it but I needed relief sooner.
I had surgery at Duke Health Raliegh in NC. Dr. Fukushima is a world renown neurosurgeon with great credentials. Drs Cunningham and McElveen are neurotologists and they are wonderful. I had surgery 8-2-05 and although the tumor was wrapped around my facial nerve I did not lose any facial movement.
I wish you all the best in whatever method you choose!!!
Lynn

[Andrew A]

Thanks for the replies guys (and gals!).  I had never heard of AN until Monday but it's reassuring to know that I'm not alone and that there is so much support and goodwill out there.

I wish you well with your treatment and I'll let you know what happens to me. 

Thanks again for your support.

Andrew

[Carol]

I was diagnosed over the summer with a 16 mm tumour.  I've already lost 100% of balance and 80% of hearing on the left side.  At first, I was prepared to go through surgery, but a talk with my neurotologist pointed me in the direction of stereotactic radiosurgery which he said would be fractionated over 15-20 sessions.  Just had my appointment with the radiation oncologist who said it would be one session only.  He advised me to wait until the tumour grows closer to 20 mm. which may happen in 6 months or maybe it will be years down the road.  He advised me to take the risk-free time I have rather than rush into treatment with its attendant risks.  Although the risk is small, there is the possibility of post-treatment strokes and even cancer, not to mention facial nerve problems, etc.  Mind you, I've already lost most of the hearing and all of the balance in that ear.  It would be different if there was significant hearing to preserve.
Carol

[stein78]

Surgery.  I am young (27), the tumor was a decent size, and I wanted the peace of mind knowing that it was out of my head.  Best of luck to you!

[ljedwards]

Andrew:

If you haven't found thiese AN sites yet, check them out.

anarchive.org - has a section on patient stories and much more, and 

anworld.com/ - has a list of questions to ask the doctors and much more.

Jeanne