New Person needs advice

[Kate B]

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

Pat..I remember that lost in the vast ocean feeling.

Hey, here is a link to a list of questions that may help you.
http://anausa.org/forum/index.php?topic=53.msg266#msg266

Kate

[Patti UT]

Pat,
  I too am trying to decide what treatment option is best for tumor #2.  It is such a hard decidion to make.  After much research and knowing quite a bit from round 1,  I am leaving the decision up to a higher power.  In my gut I think I know I need to do the surgery again, but waiting for my confirmation before proceeding.
  Best of luck to you.  It is not a good place to be, but you will draw strength and knowledge from this great group of people on this forum.

hang in there
patti ut

[matmag]

My husband was diagnosed with a NA on Halloween of 2003.  At the time, we havd a 2yr old son and I was very pregnant with my second son.  I can't remember the size of his tumor anymore but it was fairly large and he had to do something about it sooner than later.  it took us a month to gather as much info as we could and to "interview" doctors and decide which treatment was best for him.  As soon as we found Dr Stieg and Dr. Selesnick we knew what we had to do.  His first surgery was 2 weeks before Christimas.  He is now deaf in one year, but all went well until he began a CSF leak 3 days afterwards.  Unfortunately, he was hospitalized about 7 times aftewards - 6 for additional surgeries to stop the leak -- consisting of using his own fat, cadaver bone, and pig bone.  it was just one of the adverse events that could not be helped.  Glad to say that 5 years later, he goes for his bi-yearly check-ups and all is well (knock on wood).  As a family member of someone going thru this, I can honestly say it was the worst thing I had ever been thru up to that point.....and without family and Dr Stieg and Dr. Selesnick I never would have made it.  If you are even considering surgery - go meet with them - they are wonderful.

[patdel]

I'm back again. Took a break for a few weeks. Was getting so confused and had so much to think about, I needed time off. I've been reading that people suggest we consult several drs. How does one go about finding a dr. who has expertise in ANs? I do have a well known neurosurgeon and the ENT also has been mentioned here but I would like to look into radiation therapy. How do I find out about that? Should I call my ENT and ask for names, call the neurosurgeon? I want to reseach all my options but not sure how to start. 

Thanks.
 
Pat

[leapyrtwins]

Hi, Pat.  Good to see you again.  Being diagnosed with an AN is overwhelming enough and then there's the treatment decision - not an easy decision at all.  Taking a break can be a very good idea.

There is a section on the main page of this website that lists doctors who treat ANs.  They are not doctors endorsed by the ANA, but rather doctors who have chosen to "advertise" on this site.

Also, if you will tell us where you are from (what city or state) someone on the Forum may be able to recommend a doctor or doctors in your area.  I have a wonderful neurotologist who does both surgery and radiation (GK), but he's in Illinois and that might not work for you.

Jan

[Agate]

You sound story sounds alot like mine although my neuroma is larger at 2cm.  I am also 62 and very active, found my neuroma after being a little frustrated with my hearing in one ear - have had the ringing for a couple of years and it really doesn't bother me.   I live in MN and had a couple of good options for treatment and both were slightly biased toward surgery but thought that radiation was a good option.   I've spent alot of time on this forum although it took me a long time to actually ask any questions and I too needed to take breaks from it because it is overwhelming.  After alot of research, I have scheduled Gamma Knife at the University of Pittsburgh in a couple of weeks.  We did send my cd's out there and did a phone consultation.  Both decisions were hard, surgery or radiation and then with either, where to have it done.  We went with Pittsburgh because they actually trained the doctors at Mayo and they seem to have the most experience.  Good luck with your decision. 

[patdel]

I live in Cary NC so I know I am in a good place for surgery. Duke is right next door practically. My neutrologist works with Dr. Fukishma and so does the neurosurgeon I saw. I was just wondering about the radiation part. Guess I will have to call both of them to see if they do both or recommend someone who does.

It's heartening to read the post treatment forum.  have to decide if I want it gone completely or can I live with it being "dead" inside my head??? Don't know yet.

[CHD63]

Pat .....

You have touched on an important part of the decision-making process ..... whether to use radiation to arrest the growth of the tumor or surgery to remove it.  Part of the decision rests on exactly where the tumor started growing, not just the actual size.  Also the symptoms you are experiencing and whether or not they are changing, especially of they are getting worse and how fast.

I, for one, did not really have the option of radiation, partly because of the size, but more importantly the speed with which it was growing.  I am not sure I would have been able to psychologically deal with leaving it in my head, even if I had been given that option.  But, that is a personal thing ..... no one should try to sway you towards either way.  As you can read on this Forum, there are many success stories for both radiation and surgery.  After you know all of the facts, you need to do what feels right for you.

Thoughts and prayers.  Keep us posted!

Clarice

P.S.  Pittsburgh has an excellent reputation for success with gamma knife.

[been there done that]

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

        I didn't even know i had the damn thing for at least ten years or more. they grow slow, relax you got time. Mine was the size of a pancake when I finally got a MRI, got some good Dr's. they scraped it out 12 hrs surgery.  now i have  to watch and wait  I am am 50 yrs old now i will probably be dead before it gets big again. If
so I'll zap it with some radiation.

[leapyrtwins]

As big as a pancake??!! 

We're talking a very small pancake, right?

Jan