Author Topic: Help a Newbie Please  (Read 1050 times)

ANSkeeterMcGee

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Help a Newbie Please
« on: December 23, 2022, 06:15:05 pm »
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

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Re: Help a Newbie Please
« Reply #1 on: December 26, 2022, 07:10:06 pm »
First of all, thank you for posting on the ANA Forums, ANSkeeterMcGee!

I must admit that I have not heard of Drs. Gozal or DiNapoli.  That doesn't mean they are not any good.  I'm just not familiar with them.  But the best way to research them if by contacting someone who knows the resources in the Cincinnati area.  For that, I would recommend our ANA Cincinnati support group leader.  Her contact information is: Leader:
Emily Praeter
513-265-1350
elpraeter@gmail.com

As I'm still in the watch and wait protocol, I cannot speak about facial paralysis other than to say that others on this website have experienced that and are leading somewhat normal and happy lives.  It is not a wonderful thing to be sure, but it is also not the end of the world.

While in watch and wait mode, I have experienced near total deafness in my left ear.  My deafness was not the result of surgery or radiation.  My tumor (which was a tiny bit smaller than yours) crushed my auditory nerve.    But life still goes on.  Sometimes I think our fears are worse than dealing with the realities of the tragedies we experience in this life.  The men and women on this forum have experienced similar anxiety to what you are going through right now.  We can empathize with you, and we truly understand what it's like.  But most of us have also learned to still have vibrant lives despite the challenges we face.

Please keep us posted on your progress.  I would love to know what the second opinion says.  Sometimes the second opinion does offer a different perspective -- that's why I often recommend them.

We wish you the very best in your new journey!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

gbly

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Re: Help a Newbie Please
« Reply #2 on: January 01, 2023, 03:45:24 pm »
Welcome ANSkeeterMcGee!
You have come to the right place, there are a lot of input and everyone's story to date.  I am like you, I am not a fan of WW, but I did for a year, and I should have done something sooner.  I did radiation (proton therapy) in Portland.  I would recommend looking into the proton therapy, it is great and Dr. Jaboin has moved to Oklahoma and not too far for travel for you compared....?  He is amazing!  Cleveland I believe has one of the best facilities, so the is closer too.

I had the same issue as donjehle with the hearing loss in my left.  I will tell you that if is not as bad as I would have expected.  You get use to it and you just have to remind those you hang out with need to be on your good side.  I have a hearing aid, and sometimes wear it, but found it is not doing much good.  But I will say that like don says, you get use to it and barely notice after a while. 

I did have some facial issues, but let me start by saying as time goes, I am not as impacted in the end.  People are amazing and so many are on your side, you would be so happy in the end. 

I get my 3 year MRI after radiation this month (keep all posted) but the ultimate answer has to come from makes you the most comfortable.  Everyone's journey is different, but similar.  Please read all of the different sections and you will absolutely get some good questions you want to ask to help get you to what is best for you.

Good luck and keep us informed.
Happy New Year and here is to a healthy 2023 for us all.
v/r GB

donjehle

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Re: Help a Newbie Please
« Reply #3 on: January 01, 2023, 03:54:24 pm »
Yes, please keep us posted on the results of your 3-year MRI, GB!  I'm looking forward to hearing your report!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

gbly

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Re: Help a Newbie Please
« Reply #4 on: January 01, 2023, 03:57:02 pm »
Will do and thank you!

This is such an amazing community to be with and the support.
v/r GB