centers near Ventura County???

[yaya]

Does anyone know about good centers in Ventura County where they treat AN?. I was diagnosed with a 0.82cm tumor on the right side in February of this year. AN found by accident since my Endocrinologist thought I may have a tumor in my pituitary gland which turned out to be negative. I have seen an ENT PA(physician assistant) who referred me with doctors who are certified in Radiation Oncology. The doctor I talked to said that I should get another MRI first to see if there are any changes from the previous MRI. Depending on the results of the MRI he said either we would watch and wait or refer me to radiation therapy in about a year or so since the tumor is small.

[CHD63]

If you mean Ventura County, California, you cannot do any better than House Ear Clinic in Los Angeles for surgery or Stanford University in Palo Alto for radiation treatment.

Clarice

[geexploitation]

I second Clarice's statement.

[leapyrtwins]

Check out Dr. Chang @ Stanford.

Good luck,

Jan

[yaya]

Thank you ladies!

Another question, what were your earlier signs and symptoms?

 My tumor is very small and I believe that I don't have any symptoms yet. I did constantly get ear pain about a year ago, both ears, but mainly and stronger on my right side where I have my tumor. The doctors said it is because I suffer from allergies and that I just need to take my allergy meds everyday. I did as I was told and the pain did stop showing up less often. I mentioned it to the ENT I saw earlier this year and she said they are probably right since AN doesn't have pain as a early symptom. I had vertigo about three years ago to the point that I started to throw up, the doctor said I had a slight imbalance either due to high triglycerides or could be from the beach since I also had a little fluid on my right ear, no infection. Earlier this year I had again the same sensation yet no so strong, i just went to sleep and then when I woke up the next day it was gone.

Am sorry for rumbling on and thanks for listening/reading.

[leapyrtwins]

The symptoms that led to my MRI - and to my diagnosis - were diminished hearing and a feeling of fullness in my ear.

Once I made an appt. with my neurotologist, he also discovered that I had balance issues that I was unaware of.

ANs are somewhat strange; small ones can sometimes cause numerous/large symptoms, while large ones can sometimes cause few/small symptoms.

Jan

[yaya]

Thanks for responding Jan!

That is so weird that it would be vice versus on the symptoms, you would think a larger one would have more symptoms. Do you know why this is?

Do you recall having symptoms a few years before seeing the doctor and finding out you had an AN? I mean other things that you might though were from something else. I had headaches since I was a little girl, well since I remember and they never got diagnosed until about three years when the PA said I have migraines. That was years after the doctors said that it was just allergies or not sleeping/eating right, needed glasses, etc. I have also had other problems that either could be related to AN or it could be something else. I have been recently going to the doctor for the last three years with symptoms that is always "it could be this or that, but probably not" and I never get anything sure. My blood tests come out with something slightly abnormal, but then when retested it is fine, and then something else comes back slightly abnormal again and then again. I sometimes feel like am turning into a hypochondriac and I think my family thinks am just making things up. Sorry for talking too much.

- Clau

[Sheila1977]

Hi Yaya,
The year before I was diagnosed, I woke up one morning feeling somewhat dizzy and off balance.  I attributed to sinuses and the dr. I saw at urgent care didn't disagree, so I treated for sinus/ear infection.  Nine months later, severe vertigo and noticed loss of hearing and ear fullness.  That time I went to ER and because I was also vomiting from vertigo a CT scan was done and nothing was detected.  I knew something wasn't right, but again thought I had some sort of severe sinus infection.  Sometimes, we just want to go back to normal life and ignore symptoms, I did. Finally saw ENT who requested first MRI.  Second MRI this summer showed doubled growth in one year and I decided for translab microsurgery since hearing in my right ear was near zero.  Translab was 3 weeks ago today and I am happy to report I am doing well and expected to return to work as soon as balance is good enough to drive and I have a little better stamina.  My neurosurgeon said the tumor was pushing against the facial nerve and had thinned it.  I had eye twithing before surgery and haven't had any facial weakness (knocking on wood).  I had the tinnitus before surgery and still have it now.  I don't feel the ear fullness, but my ear is still a little numb.  I hope this is helpful to you.
s

[leapyrtwins]

Clau -

the symptoms aren't always vice verse - they just aren't always closely related to tumor size.  Sometimes people have very large ANs and have no symptoms; sometimes they have tiny ones that cause all kinds of trouble.   Lots of people are misdiagnosed for years because an MRI (typically with gadolinium contrast) is the only definitive way to verify - or rule out - an AN and some docs really have to be pushed to order one.

Prior to my diagnosis the only thing I remember encountering was years earlier when I had some issues with vertigo/dizziness.  At the time I went to my ENT who did some tests and found nothing.  He tested my hearing - even though it wasn't something I was complaining about - and my hearing test was normal.  Several years later when I had the diminished hearing and the fullness in my ear, he tested my hearing again and compared it to the first test; it showed a marked decrease in the hearing in my left (AN) ear.  Since he could find nothing inside my ear and no other visible signs of what was causing my symptoms he told me that there must be something inside my ear canal and sent me for an MRI. 

Jan