Help a Newbie Please

[ANSkeeterMcGee]

I have met with Dr. Steve A. Gordon at the University of Cincinnati.  He is my ENT in charge of overall care.  If I go the proposed middle fossa surgical approach, then Dr. Gordon would bring on neurosurgeons Dr. Yair M. Gozal and Dr. Vincent DiNapoli.  I do not know how to research these doctors on this site if that is even feasible.  Any help would be invaluable.

The potential for facial paralysis scares the absolute hell out of me to be honest.  The potential for complete hearing loss during surgery does the same.  I am unsure which scares me more.  Present hearing in my right ear is at ~85% and can be assisted with a single hearing aid.  Dr. Gordon has advised that my percentage for hearing preservation during surgery is only 60% with the other 40% being total deafness due to surgery.  The tumor is confined to the inner ear canal for now and measures 3mm x 7mm per my 2022 MRI.  It seems like a third dimension is missing, but this is what I was afforded.  We have defined growth since the 2019 MRI.

Radiation would likely be through Gamma Knife by Dr. Ronald Warnick.  I also have the option of LINAC with Dr. Kyle Wang.  What seems to be lacking is hearing preservation rates 8-10 years out for those who took the radiosurgery route.  This makes the comparison/contrast of approaches very difficult.

I am not a wait and see type of person especially as we have growth.  I am pleading for any advice/suggestions/things I may not have considered before I choose a course.  I have a second opinion in January 2023, but I doubt it will change much.  ANY input would be sincerely appreciated.  This is making for an anxiety filled Christmas.

[donjehle]

[Please see my response to your other post]

[bri-82]

Get your second opinion (and maybe a third)--preferably with a doctor or doctors who have more than 10-12 years experience with the condition and many (a lot) associated surgeries. Some facial paralysis is possible, but remember that nerves do heal somewhat after being irritated, so any damage may not be permanent (same goes for hearing loss). Balance is an issue to consider as well. The doctors won't know the situation until they get in there and see how the tumor is orientated with respect to the nerves and note how easy it is to remove. Even small tumors can be exceedingly difficult to remove without serious damage. The doctors may make a decision to limit the surgery and later follow up with radiation (GK/CK). Your tumor is small/medium and confined to the ear canal--this is relatively good.

[CA Marti]

I would agree with the previous post about getting two more opinions. If it was me, I personally would do gamma if it grew, but retrosigmoid if it grew rapidly. Curious as to why you wouldn’t choose retrosigmoid over mid fossa, since mid fossa may have a higher chance of facial problems? If you haven’t already asked your surgeons, I would ask them what their success rates are for facial palsy as in 1,2,3 or 5% chance? If you get other opinions, ask all of them what the chances are of hearing preservation and facial palsy in your specific case. I really liked Dr.Link at the Mayo Clinic for his insight. Maybe you can schedule a zoom consultation with him or the Friedman Schwartz team at UCSD?
Best wishes!
CA Marti

[gbly]

No matter what you decide it is always going to be a challenge to yourself and do not ever second guess yourself. You subconsciously know what is right and don't what if, cause deep down you know what will make you the most comfortable.  However hard it might be. 

I would put this out there, facial paralysis vs hearing lose.  Only you can chose which one is more important, but like stated above in Don, read multiple posts, you will see why people made the decisions they did.  I had to decide either loss hearing or facial.  I did not want to be vain, but I just was not prepared to lose all facial movement.  Hearing and the body is amazing and you can overcome with the other ear or a hearing aid, facial has additional surgeries to fix and it is never going to be the same....but it will never be wrong whatever and no matter what choice you make. 

All decisions are supported and we are here to give you our 2cents, but it is just that, our opinion, we are all different and at different stages of our life, ultimately question: what is going to make you the most comfortable. 

Know we are here and will absolutely support you no matter what, and know your decision is right for you!  I would ask you to decide what is more important and then which one are you willing to potentially sacrifice?

I lost hearing first so I went with that one, but I have found that the body is an amazing thing and does compensate.  I am 4 years since first figuring out something was wrong, I don't really notice the hearing loss anymore.

Please keep us posted on which way you go.
GB

[richcooks]

Best of luck moving forward after your treatment.  I had fractionated sterotactic radiation... in 2010.  My AN was discovered in 2003 as 1mm.  Tiny tiny tiny.  It grew 1mm a year and 2010 I too had to decide which treatment to do.  Oddly enough my brother discovered he had a AN at the same time as me.  I live on the Jersey shore.  Lots of Medical facilities to choose from.   I visited UPenn and others and did a lot of research.  The one thing that kept coming back to me was that you have a better chance to preserve hearing with Fractionated vs The Gamma Knife.  Reason being Gamma Knife is one big dose of radiation that results in collateral damage to health tissue.  Fractionated are smaller doses given over a period of time.  Any exposure to healthy tissue is at a lower dose and the tissue has time to recover before the next treatment.  I had to go five consecutive days for my treatment that lasted a total of 45 minutes each which included the prepping etc..  Here I am 13
 years later with no issues other than the tinitus and some (not a lot) loss of hearing in my right ear.  My brother lives in Rochester NY and he chose Gamma Knife.  Lost his hearing in his affected ear.  What I learned was that you need to search out the doctor who does the procedure you want.  The expert at UPenn only did Gamma Knife.  After meeting with him and based on all the research I did I decided that I wanted Fractionated.   One of my questions to all of these guys was, " Does my Tumor make a good target for you to engage?"

[donjehle]

Thank you, richcooks, for sharing your experience!  That helps our forums become richer.

[gbly]

Thank you all.  These are never easy decisions and your sharing helps everyone make their ultimate decision.
v/r GB