Recently-Diagnosed AN – 1.9 cm, deep in auditory canal (hearing still good)

[Detlef]

Hello & thanks to everyone making this forum possible.

I am a healthy 41-year-old, male.  I've got good balance, but my hearing (right ear) has slowly worsened in the higher frequencies over the last 4-years.

About a month ago, I discovered my 1.9 cm acoustic neuroma via MRI.   Since that time, I’ve been researching my options.  I’ve met with the FSR team at John Hopkins; I’ve sent my MRI & hearing tests to House Clinic to inquire about microsurgery; and I’m planning to consult with a neuro otologist this coming Friday (10Aug).  So far, I’ve gathered the following indications:

1) Surgical Removal:  because of the size (almost 2 cm) and the location of the tumor (deep in the auditory canal), I would probably lose my hearing (20% chance of some hearing preservation - retrosigmoid) or (0% - translab).  On a personal note, I would highly recommend sending MRIs & hearing tests to House Clinic for their no-cost evaluation.  I was extremely impressed with the advise they offered.

2) Fractionated Stereotactic Radiosurgery (FSR): good chance for hearing preservation (at least 60%) and impressive tumor control rates (95%).  I consulted with Dr. Rigamonte & Dr. Shokek.  Any one been treated at JHU?

3) Additional Radiation or Surgical Removal if Radiation Fails: In the unlucky event that the tumor continues growing after radiation (5% chance).  I understand that I may be able to have additional radiation or have the tumor surgically removed.  If this becomes the case, I think hearing preservation would not be the priority (I’d have to evaluate the options if I get there).


Therefore, I’m inclined to pursue some form of FSR, primary for hearing preservation (I'm a musician/singer).  I read Gamma Knife has lower success rates for hearing preservation than FSR methods.  I’m interested in Cyber Knife technology—I wish we had a better ground to compare it to FSR.

In any case, I plan on doing something in the next 2 months.  I feel I'm dealing with this whole thing positively.  I've made some dietary changes, and started Tai Chi.  Just being proactive in some way--I know must be helpful.  If anything I sleep well at night... I'm glad I don't have to panic.

I wonder how common it is for ANs to be located deep in the auditory canal.  The “rootâ€? of my tumor is further toward my brain stem, and looks more like a sphere.  Any one had experience with one like mine?

Thanks ahead of time,

Detlef – Diagosed July 6, 2007 1.9 cm AN, right ear.

[ppearl214]

Hello and welcome.... glad you found us and it certainly does sound like you have done terrific research from the onset.  Great job!

regarding your question about CK and other forms of radio comparisons, please visit the "Radiosurgery" forum here.  There is a thread dedicated to those that have had CK and noting their experiences... there are threads dedicated to FSR (I'm assuming Novalis since CK can also be done FSR -- "fractionated" stereotactic radiosurgery/therapy) and others that note their experiences.  You should find lots of helpful info there.

We're all here for you and again, welcome.  Hang in there....

Phyl

[neal r. lyons]

Hi Detlef.  You certainly have the right mind set in your approach to future treatment.  I elected microsurgery at the House Clinic in June of this year.  I'm happy with my choice but am fairly confident that I would have given more serious consideration to radiation had my tumor been smaller and not impacting my brainstem.

As to the location of your AN my recollection is that they normally begin within the internal auditory canal on a part of the vestibular nerve, and as they grow they do so into the cerrobellopontine angle toward the brainstem.  Someone correct me if this is not accurate.  If yours is not typical please confirm thru the medical field if this would entail any special consideration on your part.

Best wishes to you-  Neal

You may be aware of it thru consultation with HEI but Dr. Schwartz is trained in Gamma Knife Radiosurgery.  Just wanted to pass it on to you.

[Obita]

Hi Detlef:

Welcome to the family!!

Good luck in your quest to find the best to treat you and I do hope you can save the hearing you have. 

Kathy

[NF-2er]

Hi Detlef;

   House actually recommended retro sigmoid with an intracanicular AN? Do you mean in the Inner Auditory Canal ( IAC ) or Cerrebellopontine Angle ( CPA ) ? 20% does seem consistent with retro sigmoid but not middle-fossa where hearing outcomes are not much different than with radiation.
   Best wishes to you in whatever you choose. Please don't build your largest case on %s, but on the experience and expertice of the treating team. I personally would choose whom I'm most comfortable with over theoretical outcomes.
   All in all, you will find ( depending on study and report ), similar rates of hearing preservation among most the treatments and radiation types. Not all reports are peer reviewed and each person's passion is THEIR passion so will 'poo, poo' the others treatment type or find way to give their's an 'edge'.

   NF-2er

[Detlef]

Thanks everyone for the great information and moral support.

I've been intently diving into the posts offered at the cyberknife support group.

I'm looking into CK treatment maybe at Roanoke, VA (but they've only treated a couple ANs there); I'll first check with Georgetown University (Washington, D.C.) to see what their record looks like.

Regarding House Clinic's recommendation, Dr. Schwartz suggested I consider Translab approach for my tumor--it must be a tough one.

It's good to know I'm not alone in this journey.

Thanks again,

Detlef