Treatment Options

[kwong521]

Hey everyone, just wanted to let you all know that your comments and stories are a constant source of hope and inspiration, and I wish you all the best in whatever you do. 

My mom was recently diagnosed with a 2 cm AN (although the radiologist noted that it is statistically more likely a "meningioma" and not a "vestibular schwannoma" - what is the difference?) about 5 days ago and we are currently looking at treatment options.  We're looking v. closely at surgery with the translabyrinth approach (probably with Dr. Brackmann at the House of Ear in LA), since it appears to be the least dangerous surgical approach and her hearing in the left ear is pretty bad already.  However, we were just wondering about the risks and possible after effects?  My mom runs a really big business so if the surgery is too risky, she wants to take care of her assets and debts and stuff like that before going under the knife just to be safe.  Also, she's really paranoid that since this is a brain surgery, she may have a stroke or something really bad like that.  My grandma had a stroke a year ago and still doesn't recognize us, so my mom is worried she will end up like that as well.   But she's also worried that if she waits too long, the tumor will grow even bigger and that operating on it will be even more dangerous.  She is already getting pretty bad headaches on the left side. 

What kinds of complications happened post-op?  How long did you wait between diagnosis and treatment?  Would gamma knife or orther types of radiation be better options?   If you don't mind sharing details, I'd love to hear them.  Thanks very much for reading this, and I hope to hear from you soon.  God bless. 

[Joef]

House in LA are the best .. so if she is prone to stoke .. thats the place to be. I was told I might of had a stoke ... and I did have trouble with coordination type stuff .. but I did start to work again 8 weeks after . . full time... (computer programmer)

[Kathleen_Mc]

I would suggest your mother have "all her ducks in a row" so to speak before surgery JUST IN CASE. She should have her will update and power of attoney made for $ and health decisions as well as a Living Will  so that if anything were to go wrong things are easier for the family. My Aunt recently went into surgery and the results due to other health matters were not good, they were unable to get her to breath on her own without the ventilator and the family were at odds of what to do, even though they all knew her wishes they all didn't agree so therefor her wishes were not followed through and when she was with it for a period she gave them hell, unfortuately for two of my cousin this meant her last words essentially to them were fighting words. It is usually suggested it not be a close family member who has power to act on the living will, particularly if the persons wishes might be difficult for the family to act on. In all likelyhood your mother will come through surgery with no unpredictable problems and all will be fine. Kathleen

[kwong521]

Thank you for your responses.  :-) 

Up until yesterday, my mom did not have useful hearing in her left ear.  Dr. Brackmann (The House) said that she had lost >80% of her hearing in that ear.  Weirdly, my mom's ear felt "itchy" yesterday, so she cleaned her ear with a q-tip.  Blood appeared on the q-tip, but weirdly, my mom also felt the sensation of something like a sponge coming out of her ear.  Like when you have water in your ear and then it drips out.  Now, that left ear is a lot better and she can now use the phone with that ear.  She said her hearing is a lot better now, although compared to her good ear, what she hears through her left ear is, in her words, kind of "muffled." 

Any theories?  I'm really bewildered now.  The MRI showed that she has a 2cm acoustic neuroma or meningioma (the report says she may have one or the other, although it is statistically more likely the mengioma).  My mom met with Dr. Brackmann and was all set to have the TL surgery on Feb. 9, but now she's not sure if she wants to lose her hearing or if she even has a tumor.   

[jamie]

If the MRI shows it chances are 99% she has a tumor. However, if it's not really causing the symptoms and she's older, you may want to consider observation for a while to see if it even grows. There are most likely alot more people walking around with tumors and not knowing it then we expect. Alot of them are discovered after MRI's for auto accidents, head trauma, etc.

[Kilroy1976]

I can't agree more with Kathleen. Make that quick trip to the lawyer. Even if everything turns out fine, which I'm sure it will, you'll have the piece of mind of knowing that a llifetime's worth of affairs isn't left completely up to the mercy of the court system.

[okiesandy]

No problem in canceling surgery. I was scheduled for Nov. 9th w/Dr. Brackmann and canceled. Had CK on Jan 5th. Dr. B. was sure not in favor of that. However, my brain, my tumor.

Sandy

[Vincent87]

Kwong:  A meningioma is a tumor of the meninges, the membranes that cover the brain, closer to the top of your head.  And as for ANs, at least in my mom's case, hers was deeper, where the auditory nerve and cerebellum are located.  I know from personal experience-another family member, that going back in the late 80s, meningiomas were removed by surgery, now by GK.  Neurosurgeons say they just "scoop" meningiomas out.  Yeah, easy for them to say.  It's either a meningioma or an AN.  You need to get a second or third radiologist's opinion.  Sending you and your mom good thoughts.