Anyone with very small AN?

[CDeBrosse]

Hi everyone. Im new to this site. Im 35 yrs old..female who has had 2 MRIs that summarize my abnormality as a 3-4mm vestibular schwannoma or a facial nerve schwannoma. I guess one question is how do they figure out for sure which one? And are AN ALWAYS benign? My dad died at 45 of a brain tumor called an anaplastic meningioma...so when i heard brain tumor i freaked out!! Ive got a 22 month old daughter and an 8 yr old son. My son has 3 cafe au laitspots on him which luckily its not more....but i feel like how often does o e person here all of these "neurological" terms in her life?? So if my AN is so small and im so young i wonder what the dr at ohio state university is going to say? I wont see him until september as that was his first available. If they do operate i wonder if im likely to keep some hearing as its only slightly off now along with my balance. And ive got chiari I malformation and am wondering if this will cause me any issues. Any input would be VERY appreciated!

[cpchri1]

Hi CD.  Welcome to this site.  I'm a newbie to this site but not to vestibular schwannoma sometimes called acoustic neuromas (AN).  I had a small AN myself removed at the end of last February.  They are most always benign although my neurosurgeon (G. Lekovic) wrote a paper on a case of a true malignant AN.  I asked him about it in person and he told me that this case was SO rare that is why they published a paper on it.     Read the section on this site at http://www.anausa.org/index.php/overview/what-is-acoustic-neuroma
for more information.  The options for treatment are Observation (watch and wait), Radiation, or surgery.  Even though my AN was also small, I choice surgery because I was losing my hearing ( one day I had good hearing and the next I lost 50%). In MRI comparisons my tumor was growing so I elected surgery to remove it.  This site recommends whatever treatment you have to seek out experienced medical  doctors experienced in AN.  I myself went out of my State twice to seek consultations with several different centers and made an additional trip for the surgery.  It was worth it and you will find many here to offer up help and resources to help you make informed decisions.  These ANs are treatable and you will survive and live a long life.  Check this site for doctors listed in Ohio and the AN decision tree as well.

[arizonajack]

It's probably not a facial nerve schwannoma since you are already experiencing balance and hearing issues.

At the risk of scaring you a bit, I wouldn't wait until September to consult with AN experts.

My AN was 9mm x 3mm x 4mm when I was diagnosed and I had already lost all the hearing in that ear.

ANs are benign in the sense that they are not cancerous. But another definition of benign is "harmless" and they are anything but that.

[LakeErie]

You will want further opinions beyond just Ohio St. University Hospitals in Cleveland has a very experienced Acoustic Neuroma Management team you can google for more information and they have suburban offices as well as downtown Cleveland. The Cleveland Clinic is a top 5 rated neurosurgery center nationally and the Brain Institute there performs minimally invasive skull base surgery. There is now a new surgeon there who came from Johns Hopkins who replaced the surgeon who removed my AN.
The Mayfield Clinic in Cincy is a high volume AN treatment center affiliated with the UC med school. I believe you can secure initial consults with these centers well before Sept.
The Clinic is one of three hospitals in the country certified to teach the use of the Perfexion Gamma Knife Unit and University Hospital offers both Gamma and Cyber knife, so can get different opinions on both options of treatment.
I just named the two Ohio cities because you mentioned OSU. There are other top facilities outside Ohio that you can contact as well.

[CDeBrosse]

Wow - thank you all for your insight.  I am currently waiting on a surgeon to call me back from Miami Valley Hospital in Dayton.  I've also got a call into my Neurologist (who's out until Monday) because I've now had a headache/pressure all over my head and face for 3 weeks now.  I don't want to wait until September either....I'm getting anxious to get this treatment started.  I also have Chiari I Malformation, (7mm protrusion at cerebellar tonsils) which I'm wondering if IT could be the cause of my long lasting headache??  I think I will call the Mayfield Clinic and maybe even Cleveland Clinic.  How did you all come about getting your other opinions?  Did you have your dr's call and refer you or did you call yourselves?  I know the Miami Valley surgeon wouldn't see me unless my dr sent a referral, although my insurance doesn't require it.  I feel frustrated and depressed   And tired of having a headache 

[cpchri1]

You need a good MRI with contrast.  This is one of the first steps to diagnosing what you have.   From there get a copy of your MRI on a CD disk and make copies that can be given to different doctors who are experienced with the diagnosis.  If you haven't gotten one you need it.  Get someone to order this for you and then get a copy from the place that did it along with the radiologist report.

If you have an acoustic neuroma (AN) here is a decision tree I mentioned in earlier post:
http://www.anausa.org/index.php/overview/acoustic-neuroma-decision-tree

If you have an AN you can research this web for providers who can help you locally or out of state.  Some providers will do a free over the phone consultation if you send them copies of your MRI and other tests.  Here are two examples:
 http://www.houseearclinic.com/consultation/acousticneuroma
http://keckmedicine.adam.com/content.aspx?productId=117&pid=1&gid=000778

There are other providers too who will do this.  If you have PPO insurance (not an HMO) you are more easily to refer yourself to AN specialists and not wait for your local doctor to make the contact.  If a doctor won't see you without a referral find another doctor (assuming you have records to justify seeing the specialist).  But it will help you if you have a MRI and diagnosis (also having hearing tests results, etc.) to open the door to actually seeing a specialist who deals with your problem/symptoms.

Keep us informed and be assertive.  Don't get depressed.  If you have an AN it is not a death warrent.  These are treatable.  There is life at the end of treatment.  I know because I had a craniotomy and tumor removed and am a testament to doing my own research, own referral (even when 3 doctors and 2 ENT's refused to order an MRI for me!).  Believe it or no it was an Advance Nurse Registered Practitioner who ordered my MRI (not an MD becasue the local MD's would not listen to me)!  After that I learned I had an AN; I learned it was treatable; I referred myself; spent months talking/e-mail to specialists; I read a lot of medical papers; and learned about my anatomy (my office walls have pictures still up) and treatment options; I elected surgery; I am working now!  Took my own health care and made my decisions for it - It is empowering!  So don't get down!  Get up!  I know you have a lot to live for and we are rooting for you!  -ok?  Keep us informed and don't let no one stand in your way to take care of yourself- Craig

[CDeBrosse]

Craig - thank you.  I called Cleveland Clinic and did a self referral Friday night....actually while sitting at my 8 year old son's baseball tournment    I have to send in my most recent (April 10, 2014) MRI/summary, and my hearing tests.....yes, I definitely have had all of that done.  And to be honest, it was my mom (who's a nurse) and I who told my family dr to send me to a neurologist to begin with....they kept trying to blame all of my symptoms on hormones - as most of us women know, can make you LOSE it at times.  I just get depresses as this past year has been nothing but one big health problem after another.....dr after dr, and I am scared of having brain surgery honestly....I shouldn't be and by the time it actually comes (if it does), I'm sure I'll be at peace with it.  I was nervous about my cervical spine surgery I had this past March and it went well and I'm very happy I did it.  I am VERY tired of this pressure/dull headache that is now going on a solid 4 weeks.  I promised my mom that I am calling the dr tomorrow morning to get in again and he will (knowing him and that he knows I know my body and pay attn to all that goes on with it) order me another MRI w/ contrast.....I will be happy to have a more recent copy and send it to Cleveland and Mayfield Clinic.  I think it makes me nervous too, because of the Chiari Malformation AND the AN.  I just don't know what to expect out of either of them......I'm ready to see some specialists...so this week will be the week that I start pushing again.  Get this ball rolling!  Thank you for the website decision tree and for the free consult in or out of state info....GREATLY appreciated!