Newbie that needs more knowledge.

[daylight]

Hi Everyone,
I have been reading posts from this group for a few days now. I have been taking my AN dx lightly until I read some of your stories.

I am 58 yrs. young and feel healthy, haven't even had a cold in about 7 years.
I was dx'ed with Hepatitis C in Nov. '04. Little or no liver damage and no symptoms. Have no idea how long or how I aquired it, I live a clean life. Many have had it 30 years with no symptoms.

I did 6 weeks of a 48 wk treatment with the gold standard peg-interferron shots and ribavirin tablets, which is basically chemotherapy of sorts.  This treatment half kills you before it cures, and only a 50/50 chance at that, I was taken off when my white blood count fell to 1.3 which is dangerous level.

There are many side effects and everyones are a little different. It's not easy determining sides from real problems.

My second week of treatment I had ringing or buzzing in my left ear.  While talking on the phone I thaught I had a bad connection, this bad connection was also on my cell phone. I switched to my right ear and the connection got much better.

My GP treated me for and infection and then fluid in middle ear. Nothing helped, so I called a specialist in July.  He did a hearing test, sent for an MRI and got the AN dx.
1.5 cm long & maximal vertical & AP diameter of 6.1 x8.1 what ever that means. And is 4 mm from my brain.

Was sent to U of PA in Philly to see Dr. Ruckenstein who is Associate Professor Dept of Oto. Surgery.  I was prepared to hear what kind of surgery he recommended (did a Google search prior).  Was not prepared for wait and see and get another MRI in 6 months.  He told me surgery would give me 50% chance of losing my hearing, and with GK a 50% chance of lossing it in the next year.  If I do nothing for now I may have hearing in left ear for several years. His exit pamphlet also said that GK is still experimental and outcome is not certian.
I was impressed that he didn't try to make a big pay check by forcing surgery.

My symptoms are tinnitus, partial hearing loss, sensitivity to loud and high pitched noise, like stacking dinner plates and the PA system in Sam's Club, so I carry ear plugs. Some occasional pressure, no vertigo or dizziness yet, no numbness or pain.

I have a lot of unanswered questions. I guess that I'm looking for a free second opinion!
When do you know that you need surgery?
How rare is AN? I read 1 in 100,000 has it (Only 3000 of us in USA?)
Can GK cause hearing loss?
Is my tumor sm. med or lg?
What is CK? And odds of hearing loss?
I would like to save my hearing but surgeon thinks that the odds are against me, is there a way?
Does everyone's symptoms appear over night or do you think that my low white blood count of HCV meds exasperated the tumor? I was told that I probably had it for many years.

Thanks for reading my long post.
And at least my house is not flooded and there is food on my table.
I consider myself lucky.
Sue B.

[Mary]

Sue,   Just read your post.   I can relate to you as I'm sure many here can.   Not a hole lot is known about how you get AN.   Yes you can have it for years before you get major symptoms.   I would not wait.   I would talk to more doctors.   Try a Radial Oncologist. (sp?)    There are more ways to remove the tumor.   Not just GK or surgery.   CK is the Cyber knife or the Linear Accelerator.   It's just another type of radiation.   With CK there is less swelling of the tumor.   Swelling of the tumor can happen when GK is used but not all the time.   Depending on where your tumor is, dependson the parts of your body it will affect.   You can read "My mother has AN " for my story.

Best advice I can give.......Ask questions, read, and web search.

Best of luck
Mary

[Mark]

Sue B,

I'll give you my 2 cents worth of answers to your questions


I have a lot of unanswered questions. I guess that I'm looking for a free second opinion!
When do you know that you need surgery?

 Generally, you would look to pursue a treatment option, either surgery or radiosurgery if there is continued growth on future MRI scans or a noticeable change in symptoms ( hearing, balance , etc)
How rare is AN? I read 1 in 100,000 has it (Only 3000 of us in USA?)

3000 to 3500 diagnosed AN's annually in the US  is a pretty acurate number based on conversations I've had with neurosurgeons. I believe AN's represent about 6% of all skull based tumors

Can GK cause hearing loss?

 Yes, although the odds are better than with surgery for an AN around 1.5 cm. Dr. Medberry over on the CPSG site recently quoted some statistics on hearing retention for GK somewhere around 65%

Is my tumor sm. med or lg?

a 1.5 cm AN would typically be considered medium


What is CK? And odds of hearing loss?

 CK is a cyberknife which is a radiosurgical machine like a gamma knife, but doesn't require a frame, can deliver doses over days ( fractions) and uses active imaging similar to cruise missle technology to target the AN. Hearing preservation with CK and other machines utilizing a FSR protocol is generally felt to have better results than GK, but long term studies are yet to prove that conclusively. Theory is that treatment over several days allows the healthy DNA of the nerves to recover whereas the AN can not.

I would like to save my hearing but surgeon thinks that the odds are against me, is there a way?

 In my case ( 2 cm) hearing preservation was less than 10-20%, for 1.5 it is probably a little better but certainly still less than 30-40%. Hearing preservation with surgery tends to only occur with AN's less than 1 cm in general.

Does everyone's symptoms appear over night or do you think that my low white blood count of HCV meds exasperated the tumor? I was told that I probably had it for many years.

AN's are thought to grow about 2 mm a year on average so you probably have had yours around 8 years. Most symptoms come on very slowly and go unnoticed until they become significant. In some cases, the nerves become suddenly impacted in a manner that significant hearing or balance loss occurs very quickly. some people with very small AN's experience symptoms very quickly while some with large ones have no symptoms at all. Everyone is just different
You may get some variations on the above, but this is what I have learned over the past few years.
Hope that helps

Mark

[daylight]

Thanks, Mary and Mark for your answers.
I guess that I will wait as told by my surgeon.
The odds of total left ear hearing loss is to high. I can live with the tinnitus and soft piano tunes that play in my ear.
However,that is subject to change as I gain more knowledge.
And I might go for a second opinion.
I will continue with this group and learn.
Sue B.

[Static]

Hi Sue!
Just wanted to let you know that along with what the others told you, I would like to add something. 
Surgery does NOT mean that the tinnitus will go away.  I had surgery over 1 year ago, at Jefferson University in Philly, and lost my hearing on the AN side.  The tinnitus, which used to be not too bad, is now extremely loud and at times unbearable.  I haven't found anything that will help me with the tinnitus but at least, for now, that thing is no longer in my head.  My AN was on the right side, eighth cranial nerve, 3.5cm and pressing against the brain stem so I really didn't want to take the "wait and watch" approach. 
Best of luck to  you in whatever path you choose. 
Karen