Author Topic: Recently diagnosed . . . difficult decisions ahead!  (Read 5420 times)

GaryWNT

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Recently diagnosed . . . difficult decisions ahead!
« on: July 15, 2015, 11:27:52 am »
I'm 65 years old and have had hearing issues with my left ear for about a year. Felt like water in my ear, some tinitus and then total sudden hearing loss in the left ear. I was treated with steroids and hearing came back, but I continued to feel something wasn't right. An MRI last week confirmed an acoustic neuroma on the left side. It's 2.3 x2.1 x1.7cm. There is some impingement on the brain stem.

I just met with a neurosurgeon at Vanderbilt and he advises me that surgery is indicated. I'd like to preserve some hearing in the left ear if I can, but after reading the forum and listening to the doctor, it seems like a long shot. Now I'm trying to decide whether to go the route of having surgery through the ear that will cause hearing loss in that ear or taking the additional risk of the Retrosigmoid/sub-occipital approach.

Would appreciate any thoughts/opinions!

Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

ANGuy

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Re: Recently diagnosed . . . difficult decisions ahead!
« Reply #1 on: July 15, 2015, 05:29:53 pm »

Generally speaking, translab allows better access to preserve facial nerve function.  While preserving hearing is an attractive idea, many people would prefer to hedge their chances of good facial nerve function over hearing preservation.

While they can't predict with certainty regarding hearing preservation, tests like and ABR and some others help the ENT predict the likelihood of hearing preservation.  Discuss with your Dr what your chances of preserving your hearing are and what he/she is basing that on.  Get opinions from other Drs. In my case, while my hearing right now is actually pretty darn good, my ENT thinks my chances of keeping it if I get treatment are just about nil.  I am WW for now, but realize that down the road I will likely need treatment, so I am researching all I can about it, and about my circumstances, as I can.

FWIW, I think you have the right mindset.  You were hit with some very bad news, but you seem to be taking it with a deep breath and moving in the right direction.  Your thread tile is spot on.  You will be making difficult decisions.  Get as much info as you can regarding the various types of treatment, and do what you think is best and hope for the best results. 
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

GaryWNT

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Re: Recently diagnosed . . . difficult decisions ahead!
« Reply #2 on: July 16, 2015, 06:23:35 am »
ANGuy, thank you for your input.
Gary
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

GaryWNT

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Re: Recently diagnosed . . . difficult decisions ahead!
« Reply #3 on: July 16, 2015, 08:26:47 am »
I should offer a bit more information in my quest for advice. The visit to Vanderbilt was my second opinion. The first doctor I saw indicated that he would recommend a single radiation treatment. After doing some research on ANA, I decided that I should have a second opinion. The neurosurgeon at Vanderbilt said that he would not participate in radiation treatment for me, although he does use this treatment with other patients.  I am deliberately not mentioning doctors' names.
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

MusicCityVic

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Re: Recently diagnosed . . . difficult decisions ahead!
« Reply #4 on: March 17, 2016, 01:30:43 pm »
I was wondering how you made out with your decision.  I just found out I have it and I'm in the Nashville area as well.   MRI tomorrow and then some consults and research.

GaryWNT

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Re: Recently diagnosed . . . difficult decisions ahead!
« Reply #5 on: March 23, 2016, 11:12:17 pm »
MCV,
I consulted with four different neurosurgeons and finally decided to have CyberKnife treatment at Stanford with Dr. Chang. I am four months post-procecure and I'm doing well. Balance a bit compromised, tinnitus varies, but all in all I'm very happy with my decision. Good luck with yours. If you want more specifics about why I chose not to be treated at Vanderbilt, please PM me.
Good luck!
Gary
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016