New Person needs advice

[patdel]

Hi,  I was diagnosed with AN in June.  At that time, the dr. recommended surgery.  In August I had a second opinion and surgery was his first choice(he is a neurosurgeon) but also said radiation was an option.  The first dr. didn't feel radiation was a good idea.  My AN is 9mm.  I am in the Watch and Wait mode right now, more to buy time and do some research.  Totally confused as to what to do. I am grateful for finding this web site and reading all the comments and knowing I am not alone in my confusion. I am open to suggestions.    HELP!

pat

[Sheryl]

Hi Pat - welcome to the "club" that no one wants to be a member of    It's a great group and I'm sure you'll get lots of info.

I've been in "wait and watch" for 7-1/2 years with only 3 mm of growth in that time.  A lot of people may have trouble waiting with this "thing" in their head; others (like myself) can handle it - geez some days I even forget it's there. 

Do you have any symptoms?  Are they bothersome?  Age can sometimes be a factor in your decision making along with any other underlying health issues.  Most important - you do not mention a follow-up MRI - one (with contrast) should definitely be scheduled for the future.  Since this was just discovered perhaps one in six months and then spread out.  In my case, I had a follow-up in six months, then each year.  I've recently gone to every two years but everyone is different and each doctor has their own criteria.

Just remember - this is not an emergency and it will be a "roller coaster" ride but you have time on your side to do your research.

Keep us posted,
Sheryl

[leapyrtwins]

Pat -

we're a wonderful resource for AN patients, but if you haven't already, please contact the ANA and ask for their informational brochures - they are a great resource too.

An AN the size of yours generally gives you the option of surgery or radiation, but the location may have some bearing on this.

Sometimes patients consult with doctors who only do one procedure or the other so they might not get both sides of the picture.  Therefore, I would recommend that you consult with either a doctor who treats ANs with radiation (since you've already gotten a surgical opinion) or a doctor who treats ANs with both surgery and radiation - that way you'll get a more well-rounded opinion.

My neurotologist does both radiation and surgery so he was able to give me both sides of the picture and let me make my own decision.  I ultimately chose surgery because it was the best choice for me - but you never know, radiation may turn out to be the best choice for you.  AN treatment decisions, if you are lucky enough have them, are very personal (and difficult) decisions to make.  You should do what is best for you - after you've explored all your options.

Best,

Jan
 

[TJ]

I am in wait and see also, but it is driving me crazy.  I am the type that does not like the unknown.  If there is a problem lets fix it.  Although my AN is only 5mm which I understand is fairly small it is driving me nuts to know that it is there.  (I am experiencing some small side effects, nothing serious)  I go in for my next MRI in Sept and will be taking about the way I feel with it there.

TJ

[CHD63]

Welcome to both Pat and TJ ......

As you can see by the responses so far, each of us has a unique story to tell about our journey through diagnosis of an AN to treatment.  It would have been oh so much easier if there had been only one or two choices but much depends upon the size and location of your AN, your symptoms and/or progression of your symptoms, your age, your overall general health, and most importantly your own comfort level in each treatment option.

I would urge you both to continue to research your treatment options, listen to your body by monitoring your symptoms, and then consult with the best medical professionals you can find, whether it is wait and watch, radiation, or microsurgery.

Best thoughts .....

Clarice

[suboo73]

Hi Pat,

Welcome to the Forum - but sorry, too that you had to join this crazy club  .

I have 'officially' been in Watch & Wait for almost a year, but also more than 12+ years because of misdiagnosis.
My AN is about the same size as yours, but so far i have minimal symptoms.
You have plenty of time to research, being mindful that if symptoms escalate at any time, then that is a good time to go back to see the docs.

So - research, research, research - and then if you need to take a break, that is ok too.
Post your questions.  Even though we are not doctors, we are here to help.

This is a FANTASTIC group of folks, as you have already discovered!

My thoughts and prayers are with you and your family.
Sincerely,

Sue

[tenai98]

Hi Pat and welcome to the forum
My ENT told me this: with surgery the tumor is removed. With radiation, its growths  is abatted but remains inside. He told me to build my decision on this.  I opt for surgery.
JO

[Mickey]

Hi Pat! Fortunately you AN is very small. You do seem to have the luxury of W+W and at the same time getting all your research done. With this you can come to your own educated conclusions. In the interim please don`t get yourself in a panic because whatever your choice modern technology has come a long way into giving you great results. One of the things we have learned is that monitoring your AN is essential. If their is no grwth and minmal symptoms I personally won`t intervine. This is my case, but we are all different. Best wishes, Mickey

[Vivian B.]

Hi Pat,

Welcome to the forum. I am also W & W, 6 months coming in in Sep. 09. I am a little nervous and curious at the same time as to what this thing is doing inside. Everyone has already given you some great advice. Here in Canada, doctors are a little bit more conservative when it comes to surgeries. They feel unless absolutely necessary why not choose other options if you have them such as radiation. Myself, I have issues with both treatments. Neither seem to be ideal. Buy hey, at least there is a treatment! Hang in there, your decision will change from day to day until you become comfortable with the whole idea and journey. At least you are not alone. Remember to take deep breaths when it becomes too much. There are many of us in the same boat. Can't tell you how glad I am that my daughter found me this forum. I didn't even know it existed. 

Vivian

[patdel]

I am scheduled for a follow up MRI in january.  I am in good health right now but I am 62. So, do I fall into the "elderly" catagory where the growth can stop growing?? I don't FEEL old and am very active but I do hope the growth has slowed or stopped. I discovered the AN completely by a fluke! Had a hearing test to show my husband I didn't have hearing loss!! Alas, I do have hearing loss but minimal and I have tinnitus about 2 yrs now.  No other symptoms so it's hard to choose a treatment when I don't even feel sick.  I've lived with the ringing in my ear for two years so can handle that. But, just knowing something is growing inside my head is troubling.  We'll see what january brings..... 

[CHD63]

Pat ....

I replied to your PM, but I have not heard back from you.  Let me know again if you have other questions.

Clarice

[Jim Scott]

Hi, Pat - and a slightly tardy welcome. 

I'm sorry you have to deal with an acoustic neuroma diagnosis but, like everyone who posted ahead of me, I'm glad you found the ANA website and decided to join us on the forums. 

As for age:  I was a year older than you when I received my AN diagnosis, following some severe symptoms and an MRI scan (with contrast) that showed a large (4.5 cm) AN.  The neurosurgeon I chose recommended a surgical debulking procedure, i.e. a partial resection of the tumor to cut off it's blood supply and render it small enough to safely radiate.  3 months later, I underwent 26 FSR treatments to destroy the tumor's DNA and, in effect, 'kill' the thing.  So far, so good.  My next MRI is due soon and I trust the AN has continued to show necrosis (cell death) and shrinkage.   At the time of my diagnosis, my doctor commented that the tumor had likely been 'in there' (growing) for 10 to 15 years.  However, I wouldn't count on your age offering any kind of assurance that the tumor will stop growing, although, of course, that could happen.  If you have no symptoms at this point, that's a very good sign.  Other than a very gradual unilateral hearing loss I had zero symptoms until about six months prior to my diagnosis.  In that six month period, I developed an intermittent stabbing pain at the AN site, complete loss of the sense of taste (and a very diminished appetite followed by a 30+ pound weight loss) as well as a fairly rapid onset of impaired balance and severe fatigue.  The point being that you can carry this benign tumor in your head for a long time, completely unaware, and suddenly, it manifests itself with unpleasant symptoms, as mine did. 

You seem to be comfortable with observation (watch-and-wait) at this point so, as you stated, we'll see what the next MRI brings - hopefully, no growth.

Jim

[DHJ]

Hi Pat   I have been waiting for 2 yrs to decide how to get rid of my 2cm tumor and have done much research but so far am unable to decide a course of treatment. My Doctor at MGh      Doc McKenna has much experiance with AN and has been great. I wish he or someone would tell me what is best but I guess it is up to us to decide and this is not easy. We are not alone but our decisions can only be made by ourselves.

[Kate B]

Hi Pat,
Welcome to the forum. You are doing the right thing by going out and trying
to find information before making a commitment to a treatment.  As you may
know, there is no *best* way to treat it. They all can have unanticipated
consequences--even waiting and watching.  It ends up being an individual
decision.

After all my reading, I learned that the treatment choice depends on the
size of the tumor, its location, and your hearing level mostly. It  took me
until September  (and I was diagnosed in May2001 and my treatment was at
the end of November2001) to know what I really wanted to do and where to go.
I considered each treatment option seriously and oftentimes felt overwhelmed
with all of the information.
My right sided growth was 1.5 cm. After reflecting over my experience, I
want to *emphasize* one thing: the experience, expertise and passion of the
doctor you select for treatment means everything no matter which treatment.
Most agree that they need experience with more than 100 cases.  That
statement circles back to the paradigm shift.

Through my reading, I also learned about potential side effects and about
the many excellent facilities throughout the country. One of the first
decisions I made was that this was unique enough of a condition that it
warranted going where the expertise works even if it was outside of my local
area. I looked for patterns in the posts on the listserv (before this format it was a listserv) related to
treatments and doctors. The listservs and guest books provided great info,
but it can also raise anxiety because each tumor is individual.

Then it dawned on me that I didn't know how the member's posts and the
side effects they were experiencing fit into the larger picture.How frequent
were side effects related to the various treatments?  Could I generalize
from the qualitative data?
That caused me to put together a chart in which I listed the data.I wanted to know
the data related to hearing preservation, facial nerve preservation,  in relationship to the
size of the tumor etc... It is another way to look at treatments.


I also put myself through some questions that helped me make my decision. They are included
under the heading "One Size does not Fit All" at the http://anworld.com/

Kindest Regards,
Kate

[patdel]

Thank you all for the words of encouragement.  It's a tough decision to make; consequences no matter which way you go.   Thanks Kate B for the info. Very helpful.  I will definitely research some more and hopefully, not obsess too much over it.  One day I think surgery, the next radiation. I am complying questions to ask the Dr. to try to help me decide if this thing decides to continue to grow.

Pat