Update 1.3cm AN

[Greg M]

Hi everyone just got back from my ENT doctor. He forgot to give me the report with all the info last week. As it is reads: There is a Bilobed mass??? involving the left cerebella pontine angle and internal auditory canal. This measures approximately 1.3 x 0.8 x 0.9 cm and demonstrates diffuse enhancement post gadolinium. This fills a large portion of the internal auditory canal. There is mild protrusion into the cerebellar pontine angle. So does anyone have this BILOBED mass? He said it was like two balloons attached together. I have two appointments, one is with a DR. Rick Hatson- ENT Neurological Surgeon and the other is with Dr. Jonny Delashaw Jr. - Neurological Surgeon at OSHO in Portland Oregon. My ENT is referring me to these surgeons but he also thinks looking into Gamma/Cyber is a good idea but he didn't refer me yet. I just called him back after I got home and left a message to please refer me to these other doctors(for radiation) and ideally ones who do both. I think I need his (ent) referral to see any specialist since I am on state aid? Does anyone know that for sure? Well there goes it, I wish I could just see all the doctors in one day, it looks like I'm going to be driving around a bit. If anyone can chime in I would appreciate it. Thanks Greg

[Pooter]

I've never heard of that term exactly, but when discussing her diagnosis, the Dr who treated MsMaggie and myself described hers as "mushroom shaped".  I would think that the two descriptions would be accurate to describe something that starts outside the ear canal, travels through it, to the other side.  What you'd end up with a something that looks "bi-lobbed" or like "two balloons tied together" on an MRI (1 dimensional picture).  I don't think "bilobbed" is of any major consequence to the over-riding diagnosis of what the "mass" is.

Hopefully, that helps..

Regards,
Brian

[JohnnyDiaz]

My AN looked like a sideways ice cream cone <). My ENT also referred me to a Neurosurgeon who then referred me to another Neurosurgeon. The key was to find a neurosurgeon who works both with CK and surgery. My Dr. had skills in both and gave me great advice. You want to feel comfortable with your Dr. because you will see a bunch of him or her. Dont be afraid to ask questions about their experience and qualifications.  keep us updated....

[msmaggie]

About 90% of all tumors in the cpa are ANs.  Mine was the other 10%, a cpa meningioma that started in the dura and extended into the ICA.  Don't know if yours is the same, but I do know that the treatment for meningiomas and ANs is exactly the same.  The only difference is that a cpa meningioma does not directly involve the auditory nerve, hence making it more easily removed.

Good luck with your pursuit of info and treatment.  You are in the most frustrating stage!  Once you decide on a treatment, you can relax a little.  Keep learning all you can and talk to every dr. who will give you 5 minutes!

Priscilla