Author Topic: 3cm AN diagnosis-seeking surgeons for treatment  (Read 1479 times)

mbrandes

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3cm AN diagnosis-seeking surgeons for treatment
« on: November 09, 2018, 09:35:28 am »
Hi, I just joined the club and am feeling like most of you have felt/are feeling...scared!  I’ve probably had some minor symptoms for a couple of years that frankly, I just ignored. Once I realized the hearing in my right ear wasn’t quite the same as the left I made a Dr appt. She referred me to an ENT who did the hearing test. While there is a difference between hearing in each ear my right side is really not that bad. Every Dr I’ve seen is blown away. The prompted the MRI and well you know how the rest goes. 3cm located on the right side with some cystic areas. Since my hearing is t really that bad the thought of losing it all is a bit terrifying. But not as terrifying as the facial nerve possibilities. Mine is on the very large side so this terrifies me even more!
So I live in Austin, TX. I saw a few local Drs here in town but then recently had an appt at MD Anderson in Houston. Dr DeMonte and Dr Gidley seem extremely competent and experienced, doing this about once a week. Has anyone else had recent experience here?  Is there any where else I should be looking instead?  I know about House in LA but don’t feel the need to travel that far unless it’s absolutely necessary. I’m already worried about traveling 3 hours and what that travel home will be like. Please provide input. If it must be done (and I know it does) I’d prefer to do this in Januyafter the holidays and before the nice weather returns. I’m only 37 and have 2 young kids, 5&8.

samanthalambert

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Re: 3cm AN diagnosis-seeking surgeons for treatment
« Reply #1 on: November 09, 2018, 11:11:02 am »
Hi there. You sound exactly like me! I am newly diagnosed - right side. 3.2 cm w some cystic areas. Not too much hearing loss - the ENT couldn't believe I haven't had more symptoms (only mild hearing loss and fullness in the right ear.) No headaches, no vertigo. Just now starting to get some vision issues. Ever since being diagnosed last month my biggest problem is anxiety and sleep/ appetite loss. I am 46 and I also have two kids - but they are teenagers. I have found an accomplished ENT surgeon and neurosurgeon team in Charleston, but waiting until the new year is hard for me. I'm sorry that I can't speak to the surgeons in your area. I wish you the best of luck. Let's support each other during this time.
3.2 cm AN (right side) diagnosed in 10/2018
Only symptom: mild hearing loss
TransLab surgery 1/2/19 @MUSC w/ Drs. Lambert & Patel. Sliver of tumor left.
Rt. Side facial paralysis (nerve stretched), tumor was "sticky", SSD, getting platinum weight implant 6/13/19
Doing fine otherwise!

Jill Marie

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Re: 3cm AN diagnosis-seeking surgeons for treatment
« Reply #2 on: November 09, 2018, 01:34:37 pm »
Welcome to the club!  I had my surgery in 1992 so I'm not up on the latest procedures or the best doctors so someone else will have to help you with that.  I just wanted to tell you that I was 36 when I had my surgery and had two children a bit older then yours.  My tumor wasn't as big as yours but it was on the facial nerve so I understand your fears.  I've had issues over the years with my eye but I'm doing fine.  I'm retiring this Winter after 24 years at the same job.  You will get through this!  Feel free to ask more questions.  Take Care of yourself, Jill
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

v357139

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Re: 3cm AN diagnosis-seeking surgeons for treatment
« Reply #3 on: January 17, 2019, 10:11:15 pm »
Mbrandes,
Welcome.  I had alot of worries also.  I started with 65% hearing and I was terrified of losing it.  Well I lost it, and it has not been any big issue at all.  Really a minor inconvenience at most. Mine was 3.5cm at surgery time, and I had an excellent result, no facial issues at all.  So don't worry too much about 3cm being too big.

Main thing is to pick a very experienced team, which gives you a really good chance of a good result.  I do not know the doctors you mentioned, but I am not in TX.  This site does have a list of doctors for each area.  Let me know if you cannot find it, and i will try to help locate it.

I was the king of stressing while I was deciding.  But I made it through, and you will too.  Get with experienced doctors, and you will have a great chance.
Rich
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!