Author Topic: Hello and introduction...  (Read 2295 times)

Matthew

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Hello and introduction...
« on: August 09, 2017, 10:17:27 am »
Hi everyone... My name is Matt, I'm 46 years old, living in Minnesota. I was diagnosed by MRI on 7/5/17 with a R side 1.8cm x 1.3cm x 1.8cm AN following and audiology appointment for R sided hearing loss/intermittent tinnitus. I work as an RN and have been an active musician for many years, playing out regularly. Other than the R hearing loss, tinnitus and an occasional 'ticking' sound, I've had no symptoms. Unfortunately, my R ear has always been my "good" ear, as a series of childhood L ear infections, tubes and an eventual typanoplasty caused my L sided hearing to be a bit impaired, although adequate.

First, let me say WOW!! What an emotional roller coaster! I mean- scary stuff, right?!?! It is a lot to take in, both topically and emotionally. I'm very glad I found this forum as it has pointed me toward some great resources and has let me read some very informative posts. There is a lot of information out there, but I have done my best (but not always) to stick with highly reputable sources. Although I have looked at all of the treatment options and have formed some idea of what I want to do, I'm trying to keep an open mind until my first consult. I'm hoping my doctors will provide what they feel will be the best approach for the size/location of my AN and my life moving forward. My first consultation is 8/22 at Mayo Clinic with Dr. Link and Dr. Carlson.

A true thank you to everyone who has shared their stories and insight on this forum, it has been extremely helpful to me during this past month. My consultation is now less than 2 weeks away, and for that I am grateful. In the meantime I'll just keep trying to stay busy, researching and waiting. And I truly hope the waiting is hardest part! :)
Matthew in Rochester, MN, 46 years old
2.0 x 1.3 x 1.8
Diagnosed 7/5/17
Retrosigmoid 10/23/17
CSF leak repair (fat graft) 10/30/17

mandihester

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Re: Hello and introduction...
« Reply #1 on: August 09, 2017, 12:05:29 pm »
Good luck to you in the coming weeks as you gather information and decide who you want to proceed!!
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues

IL17JJ

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Re: Hello and introduction...
« Reply #2 on: August 09, 2017, 12:14:04 pm »
Welcome to the Forum Matt!

I am kind of new here too and have found that this forum is full of information, resources and conversations that will hopefully make our journeys more informed. Take time to explore and join in anytime.

Jim
02/11/17 MRI: Left Geniculate Ganglion 6X3mm Facial Nerve Tumor
Watch & Wait with Periodic Imaging

ANSydney

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Re: Hello and introduction...
« Reply #3 on: August 09, 2017, 06:36:09 pm »
Welcome Matthew to the club that nobody wants to be a member, but everyone is friendly. I also want to wish you good luck in the coming weeks as you gather information an decide how you want to proceed. These tumors are usually slow growing so you have time to research and come to a good decision. 6 monthly MRIs will keep an eye out for potential growth.

How long have you had symptoms for?

Matthew

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Re: Hello and introduction...
« Reply #4 on: August 10, 2017, 08:31:10 am »
Thank you to everyone for saying "hi"!

ANSydney- My first symptom (gradual hearing loss) started about 10 months ago. I thought it was allergy related congestion or eustacian tube dysfunction, mainly because I could not 'pop' my right ear. I've only had the tinnitus for about 3 or 4 months, at first very intermittent and now more frequently. Although when I'm at work or out and about I don't notice it, and I haven't lost any sleep because of it. Oddly, every now and then if I yawn or during exercise, my Right side hearing will all of a sudden greatly improve, but then subside again within a matter of minutes. Despite my AN diagnosis and the daunting decision in front of me, I am super grateful that my audiologist had the diligence to refer me for an MRI. Given my musical performance history, the hearing loss could have easily been chalked up to noise exposure. No matter my outcome, I am indebted to her for being a good practitioners.
Matthew in Rochester, MN, 46 years old
2.0 x 1.3 x 1.8
Diagnosed 7/5/17
Retrosigmoid 10/23/17
CSF leak repair (fat graft) 10/30/17

ANSydney

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Re: Hello and introduction...
« Reply #5 on: August 10, 2017, 05:03:37 pm »
Matthew, I also experienced an episode of moving my jaw and suddenly the hearing being perfect. I had the phone up against my ear, as a rough hearing test in the early days, moved my jaw around and suddenly the dial tone was perfect. Could not reproduce it. Also, after installing a dental crown (no needles) the taste on the side of my tongue was altered. I mentioned to the neurologist that the jaw and the nerves that pass through the internal auditory canal must be related and he said no.

ChristineB1111

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Re: Hello and introduction...
« Reply #6 on: August 10, 2017, 09:08:01 pm »
Your symptoms sound very similar to mine, as far as the yawning and what not is concerned. I have tinnitus 24/7 though, it sounds like thumping, like I can actually hear my heart beat. And often have ringing with it, left ear. But I've experienced the same thing where my hearing will improve after that "pop" but only last a minute or two. I've actually tried yawning sometimes just to hear better for a minute. Sad what we do to ourselves. I was initially told my tympanic membrane had fallen last winter when I first really experienced the hearing loss.  Mine wasn't gradual. I woke up one day and felt like my ear was plugged and it's gotten worse since November. The first dr i saw said yawning changes the pressure in the ear and would help my tympanic membrane go back up. But my last dr who diagnosed my tumor didn't say anything about my tympanic membrane. So I don't know why that pop happens or the brief hearing experience. I don't have that as often anymore but on occasion I "get lucky" and can hear better out of that side for a minute or two.

Thank you to everyone for saying "hi"!

ANSydney- My first symptom (gradual hearing loss) started about 10 months ago. I thought it was allergy related congestion or eustacian tube dysfunction, mainly because I could not 'pop' my right ear. I've only had the tinnitus for about 3 or 4 months, at first very intermittent and now more frequently. Although when I'm at work or out and about I don't notice it, and I haven't lost any sleep because of it. Oddly, every now and then if I yawn or during exercise, my Right side hearing will all of a sudden greatly improve, but then subside again within a matter of minutes. Despite my AN diagnosis and the daunting decision in front of me, I am super grateful that my audiologist had the diligence to refer me for an MRI. Given my musical performance history, the hearing loss could have easily been chalked up to noise exposure. No matter my outcome, I am indebted to her for being a good practitioners.

Matthew

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Re: Hello and introduction...
« Reply #7 on: August 16, 2017, 02:14:45 am »
ChristineB1111- Thank you for the response. I haven't had my first consult yet (Aug 22) but I'm guessing the infrequent intermittent hearing improvements in my AN ear are the result of temporary pressure in my ear which causes either the eardrum or auditory nerve to become temporarily over sensitive. I'll definitely mention it at my consultation and see what the doctors have to say.
Matthew in Rochester, MN, 46 years old
2.0 x 1.3 x 1.8
Diagnosed 7/5/17
Retrosigmoid 10/23/17
CSF leak repair (fat graft) 10/30/17

Matthew

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Re: Hello and introduction...
« Reply #8 on: August 26, 2017, 02:31:36 pm »
Update... After my initial consultation (which included lengthy meetings with more doctors than I can count) I've decided to go with the consensus recommendation of retrosigmoid surgery. Although not the only recommendation, it was by far the prevailing one amongst a team that does all modalities of surgery and radiation. Of interest, a lengthy portion of my consult was spent discussing who I am, what is important to me and my family, my fears/hopes as well as what I look forward to. I revealed that first and foremost I want my AN experience behind me, and that I did not want the problem to linger in my psyche any longer. Amongst the rationale for the team's recommendation: my age (46), my serviceable AN side hearing, my current lack of symptoms (hearing loss and tinnitus are my only symptoms) and that the majority of my AN is cystic. I'm now awaiting dates for both the surgery and pre-surgical balance testing.

The more steps I take toward dealing with my AN, the better I feel. I will keep everyone updated.
Matthew in Rochester, MN, 46 years old
2.0 x 1.3 x 1.8
Diagnosed 7/5/17
Retrosigmoid 10/23/17
CSF leak repair (fat graft) 10/30/17