I've just been diagnosed with AN

[Bryant]

I have just been diagnosed with acoustic neuroma. What should I do?

[Sheryl]

I'm sure you are frightened.  The best thing is not to rush into any decision - AN's are usually not emergency situations.  Review all your options and, if your health insurance will permit, seek as many opinions as possible once you decide on surgery vs. radiation. 
Sheryl

[iowaboy]

I, too, have just been diagnosed with AN. Last December I had a bad cold, and one morning I woke up with my ear ringing like crazy. I then had some balance problems. I went to my local doctor twice and he tried different methods like steroid nose spray, meclazine (motion sickness OTC tablets), anti-biotics, etc. Nothing worked. I thought all I had was some fluid in my ears (my ear felt full). I decided to go to an ENT and he checked my hearing (found significant hearing loss in one ear) and did various proceedures. He suggested an MRI (what a nasty experience-I guess I am somewhat clostrophoebic). To my horror, they said I had a growth on my ear nerve. Tomorrow I go see the surgeon at the University of Iowa Hospitals. I am kind of scared but I understand I have to get it fixed before it grows anymore. I am lucky, I think it is only 9mm at this time. I hope to find others with this experience to help calm my nerves some.

[Karissa]

Research, Research and Research....find the best doctor and treatment for YOU!!

[Dave_S121]

To Iowaboy.  You are lucky, University of Iowa has been rated as the second best department of Otolaryngology in the country.  When I was researching my options I was told by a number of people that Dr. Gantz is one of the best in the country.  Good luck. 

[Kate B]

Welcome to the list. 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 related to
treatments and doctors. The listservs and guest books provide great info,
but it can also raise anxiety because each tumor is individual.

Then it dawned on me that I didn't know how listserv 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 that I've attached. 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.

This chart compares some of the various treatments using citations from
medical professionals, websites, or physician's e-mails. It is a laypersons
attempt to condense medical citations and information and that makes this
chart different from most. However, I am *not* a medical professional and no
decision should be made based on the chart. It was meant
to be a starting point for a conversation with your doctor. Please e-mail me if you'd like a copy. With this new format, I am not sure how to attach it.  The
chart also includes some of the most common websites.. 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

[gregpstone]

Bryant and Iowaboy,

I echo the advice to go slow. I'm 49 and had a 3 CM left side AN diagnosed a year and a few months ago. the first surgeon I saw scared my wife half to death saying that the tumor was compressing my brain stem and that terrible things could happen if he didn't get it out right away. I had read enough by the time of my appointment to cause me to question this. I asked him about radiation treatments which had lower post treatment side effects than surgery and he said that radiation results were overstated because half the time the tumor didn't grow regardless of treatment. Why rush to do surgery then if there's only a 50% chance that I need it? (he was exagerating, for my age the odds of no growth in the next few years is closer to 40%)

Fortunately my ENT set me straight after this about who to see. I ended up with a Surgeon who had come to St. Louis from the House Ear Clinic who has a lot of AN experience. I'm on watch and wait with about 30 other AN patients of his. If there is growth I will get treatment but haven't made the final decision yet between trans-lab, GK and FSR.

Take care guys,

Greg

[kristin]

hey iowaboy! i was recently..well, in december, i was dx w/ an 8mm AN. my local ENT doc did his fellowship w/ dr gantz in iowa and said that they did a lot of AN surgeries there. he personaly recommened him as one of the two docs he would have do the surgery if it was his decision. the other was dr brackmann at the House Ear Clinic in LA..with whom i'm scheduled in april for surgery w/ the middle fossa approach. just thought you'd like to know....
kristin

[iowaboy]

I talked to dr. Gantz on Wednesday (yesterday) and he was very informative and reassuring. I did some research and he IS highly thought of, and the Clinic IS rated #2 in the nation. I go into surgery in about a month after some pre-op tests. I do consider myself lucky to live only 50 miles from Iowa City. He is going to perform the Middle Cranial Fossa surgery because he can "see" the tumor better. This involves cutting a plug out of my skull and going down between the brain outer sack and the skull to get at the tumor. This is all very upsetting to me as you can imagine. I guess I'm as much afraid of the anesthesia as the surgery. I understand it is probably the most dangerous part. Anyway, Dr Gantz told me he does 2-3 of these a week, and he totals about 70 a year. He thought I have a great chance to not lose anymore hearing since the tumor is small. I will be in the hospital 4 to 5 days with a 4 wk. recovery period.

Thanks to all for your support, and I will keep you updated as things unfold.

[antoinette]

If it is small, you have plenty of time to learn and research and get accointed to all there is. Doctor, facilities, new technology like endoscopic surgery which to me has a real potential but not yet enough history.
You can lear about microsurgeries the different protocols and radiosurgery.
You can practice relaxation and become knowledgeable about your symptoms.
Try to keep a journal, noting the symptoms if they change, try to note why, what did you do, eat, did you worry, did you bang your head on the car frame, did you fall? Make notes and date them.
Once you know more and your MRI tells you if the size remains the same or changes, then look at your journal.
Write whatever you remember of your child illnesses. No one advice to do this, but I have a feeling that soon, it will be important if any researcher wishes to dicover what created this tumor. The queen of all benign tumors!
antoinette

[mlwitte]

I was just diagonsed last Tuesday 3/16 as well. Just a bit of a schock but I have notice hearing loss since 9/28 and more pronounce in Jan of this year. Went to two different ENT's and found one that was concerned enough to have an MRI done. From the last week - I have learned it is a small tumor 7mm but is providing me with constant ear ache, ringing and fullness. Minor compared to most I supposed. I was fortuneate enought to be referred to Stanford Medical School's Dr Jackler - who appears to be the real deal. Textbooks, staff etc. He is recommending micro surgery is summer to try and preserve my hearing? I am 47 and my family lineage tends to go into the 90's.

I need to learn more- for my wife and how to educate my kids - who are 6 and 9. The recovery looks like a real pain.  . How can I find out other Dr to interview? I do have a great friend in Radiology in Chicago who is going to review the MRI with collegues. Any ideas?

How rare is this thing anyway? Causes? Thanks.

Marcus

[Karissa]

I had a 4 mm AN removed surgically in December from Dr. Rick Friedman at the House Ear Clinic in LA.  I traveled there from OKC.  I am doing great. I go for my 3 month follow up hearing test today.  You can mail your films/report to Dr. Friedman and he will call you.  Let me know if you need more information. Good luck!!

Karissa Shields
karissashields@cox.net

[alwaysanonymous]

marcus,

here are my best answers to your questions:
well, yes the recovery is a real pain but since you have a family it will go by faster than you think. and in a few years you will be thinking wow! i cant believe i actually went through that! the link to the right is a website where you can look up doctors. you can enter words like acoustic neuroma and the state you live in if you want to be close to home http://scholar.google.com/]] i got my surgery dont at johns hopkins but my tumor was 5cm so that may not be your best option. there are no known causes of one sided(unilateral) ANs. believe me if there were i would know. it is still being researched. however, 2 sided (bilateral) ANs are from an autosomal dominant disease called NF2. ANs appear in about 10-13 people per million or 1 in 100,000. this site may be helpful to you http://www.earsite.com/tumors/common_qs_acoustic_neuromas.htmlhttp:// i dont really know what to say for your wife but since i am a kid, you shouldnt tell them exactly that its anyhting serious because they will easitly get scared. just tell them that the doctors need to fix you but you will be okaay. (my dad had an AN like me)when i first saw my dad in the hospital during his recovery it was scary for me to see himm because he looked like a different person. somehow you need to prepare them for that just in case you get facial paulsy. tell them that your face is tired and it needs to take a rest. as they get older in their early teen years, you should educate them about it and say whatever you want then but now just be careful not to scare them. also, it may be a good idea for your kids to get their hearing tested or ask them if they ever hear ringing in their ears. afterall, my dad and myself both had ANs and so does my aunt. even though ours were unilateral, i do thik that somehow they were genetically linked. i hope that i have helped you and good luck on your long jouney!