diagnosed 1 month ago

[fifigigio]

Was sent for MRI by a doc in the box about 6 weeks ago for dizziness-MRI came back abnormal and was referred to neurologist, then was sent to neurosurgeon. Neurosurgeon said we wait 3 months then repeat MRI. AN is 1.2 centimeters, I have constant dizziness when up and about, embarrassing balance (co-workers/customers at work think I am drunk or on drugs), and constant headache. I am conflicted about what to do. I feel that this tumor is affecting me strongly, but I have watched the videos of surgery patients and am frightened-could someone advise on the size of the tumor and what to ask the doctors, please?

[Jim Scott]

Hi ~

If your symptoms are negatively affecting your quality of life, waiting might not be your best option.  With a relatively small 1.2 cm tumor, I would inquire about (non-invasive) radiation treatment.  Because neurosurgeons perform surgery they may not be open to your inquiry about employing radiation treatment (some are, some aren't).  If you find that to be the case, you may have to seek out one or more doctors that perform radiation procedures, e.g Gamma Knife, Cyber Knife or FSR (common with small ANs).

Jim

[arizonajack]

Welcome to the site. Lots of good people and lots of good information here.

Your symptoms seem a bit extreme for a small AN, but it's hard to comment on size without having all three of the measurement.

Mine was 3mm x 4mm x 9mm (9mm being along the length of the nerve) in April and grew to 4mm x 4mm x 1.1 cm by October.

My major symptom is the complete loss of hearing on the AN side and I just have some balance issues but no dizziness or pain.

With a 20% growth in length I'm going to kill it  as soon as I can and my AN specialist agrees that Gamma Knife is appropriate.

Whether surgery or radiation is appropriate for you depends on a variety of factors.

There are AN centers listed on the ANA website. Many give free second opinions after reviewing your MRIs and history. Check them out.

http://anausa.org/index.php/medical-resources/medical-center-directory

[Alison]

Hi,

sorry to hear about your diagnosis. I was diagnosed in August with a 1.4 cm AN, a similar size to yours, and I also have dizzyness, balance issues (walk like I'm drunk) and headaches, to name but some of the symptoms which I've had since June.  ANs are the gift that keeps on giving!

I am now awaiting SRS radiosurgery, (Linac with the headframe,  I'm in the UK and CK and GK are not commonly available).

I was concerned that radiosurgery may not ease the balance issues, but surgery may not either so it is a difficult choice, but the neurosurgeon I saw here said he wouldn't even consider surgery for a AN of my size. (I hope it hasn't grown in the meantime!) But then the UK treatment pattern seems to be different to the US.

The radiosurgery forum on here is a great source of information.

best wishes,

Alison

[CHD63]

Hi fifigigio .....

I'm with Jim, that if your symptoms are severe and greatly interfering with your life, it is important to tell your doctor(s) and explore your treatment options soon ...... severe symptoms are more important than the exact size of your AN.

If you were unaware of it, there is a list of excellent questions for physicians on the home page of the ANAUSA web site:  see:  http://www.anausa.org/index.php/overview/questions-for-treating-physician

Let us know how things are going.

Thoughts and prayers.

Clarice

[millie]

I just had trans-lab Oct 17th at NYU for a tumor that was found FEbruary 28th or thereabouts.  Prior to that, my only symptom was hearing loss...as time went on, I started feeling like there was something sitting on my head and a feeling of fullheadedness.  My hearing grew worse.  An MRI in July showed the tumor had grown, and so I decided to have it surgically removed.  I probably would have acted sooner if my husband had not had serious heart issues. Sometimes, I refused to think about the AN, like an ostrich who hides his head in the sand-you can't do that for too long! Only you can advocate for yourself what you feel.
As it is, I am recovering and glad it is out.  This site was and is a help I could never do without. Folks on the site said to do my homework and learn all about these tumors as I can, get some opinions from excellent doctors, and then make a decision. 
We will pray for you on your AN journey.  You are not alone.  You can do this.
Mil

[PaulW]

Its not unusual for small tumours to cause a lot of symtoms.
It has been theorised, that this happens due to compression of the nerves that are in the Internal Auditory Canal, as well as restricting blood supply to the cochlear and nerve damage.
Strangely as the disease progresses and more nerve damage is done, people often feel better!

Investigate all of your options, your tumour is small, so you do have time.

I also had a number of symptoms prior to treatment, mainly hearing loss, but balance was compromised, fatigue and concentration was also a problem.

I am happy to report 2 years 3 months later, my life has returned to complete normality.

[leapyrtwins]

I'm with Jim also.  While it's certainly acceptable to wait and have another MRI in 3 months, if your symptoms are negatively affecting your daily life I wouldn't wait.

I can relate to how frightening the prospect of surgery is, but I can also tell you that once I was given the option of surgery or radiation I chose surgery and I've never regretted it.

That said, treatment choice - if you have it - is a very personal choice and only you can make it.  Do your research and definitely see another doctor - or doctors.   If it were me, I'd see a neurotologist.  I also suggest you find someone who does both radiation and surgery so he/she can give you an unbiased opinion.   Docs who only do surgery tend to recommend surgery; docs who only do radiation tend to recommend radiation.  The size of your AN would certainly put you in an acceptable range (usually under 3 cms) for radiation, but location is also a factor.

The ANA has several brochures that are very helpful.  They are free for the asking; don't hesitate to contact them.

Best,

Jan

[It is what it is]

Ditto Jan's comments.  The type of treatment is totally your choice and at this point, it sounds like you have some good options.  I had a small tumor and began having more symptoms shortly after the diagnosis in May, so I opted for surgery in August.  I still had good enough hearing and wanted to save that if at all possible and was afraid if I waited, that might not be a choice.  Fortunately, I came out of surgery with no further loss of hearing and am doing well three months later.  Please let us know what decision you make and how you continue to feel. 

karen

[lkrk]

My tumor was a very small tumor but it was growing more into the cochlea. I was diagnosed in June 2011 with a 7 mm tumor. One year later it did not grow.  This past December it was 1.5 CM.  My quality of life has diminished greatly.  Dizzy, fell twice, nausea.  I've been to balance therapy and to balance confidence therapy.  I suggest doing both.  I no longer am fearful of falling even though the vertigo is still there.  So after my last visit my surgeons want it to come out. March 13th is the date of my surgery.   

Make sure you are seeing a doctor with plenty of AN experience.