Author Topic: new here  (Read 1284 times)

Ehle, Dave

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new here
« on: January 29, 2022, 03:53:24 pm »
I was diagnosed back in November 2021 with a 24x23x21 mm left side.  I have had life long significant hearing loss on the left, and tinnitus pretty chronically for at least 40 years.  In july of 2021 I started having left sided facial numbness which has grown to include balance issues, along with accompanying nausea.  and the fatigue!  I am still able to work, though I don't know how much longer that will last.  I was referred to a local neurosurgeon who started the consult with reference to my "little acoustic neuroma".  It went down hill from there, to the extent that my family Dr. told me he thinks the surgeon wasn't looking at my MRI.  I don't think I am letting him near my grey matter!  I am now waiting on a radiation consult and a referral to another neurosurgeon. 

I am working hard to maintain a degree of good humour; all my life I have been saying "it could be worse, I could have a brain tumour".  Well, it still could be worse-at least I know I have a brain tumour.  I have a very supportive wife (who is a Dr., which gives her way too much knowledge), a great boss, and a very supportive church community. 

I live on the west coast of Canada, on Vancouver Island.  Does anyone here have experience with resources in Vancouver or Victoria?
Dave
Left side 24x23x21
"its pretty small, we should just watch it for a couple years" said the neurosurgeon.

MarlaB

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Re: new here
« Reply #1 on: January 29, 2022, 04:34:07 pm »
Hi Dave, welcome to the club where we say, "at least it's not cancer...."

You missed a virtual meeting this morning with a bunch of folks from BC....sorry because they would have been super helpful. I'm in Bellingham, and I had to go to Seattle for treatment, which I suppose, may be out of the question for you.

 I know of Dr. Akagami and Dr. Westerberg who work out of Vancouver, I'll try to get you some other contacts, or, if you can't get in to see or talk to either one of them, they might have some other names for you.

Marla B

Ehle, Dave

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Re: new here
« Reply #2 on: January 29, 2022, 04:51:22 pm »
Thanks for the info.  I am being referred to Dr. Akagami for a 2nd opinion, so its good to hear his name mentioned.  I will keep my eyes open for other local meetings; I would have loved to have listened in.  Ah well.  I have several family members who live in Bellingham, but yes, going to Seattle is probably not going to be a immediate option.  Thanks!
Dave
Left side 24x23x21
"its pretty small, we should just watch it for a couple years" said the neurosurgeon.

MarlaB

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Re: new here
« Reply #3 on: January 29, 2022, 05:15:21 pm »
Here in Bellingham? It's kind of a small town.... might I know them? My last name is Bronstein....

Ehle, Dave

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Re: new here
« Reply #4 on: January 30, 2022, 10:37:33 pm »
my and is a Culbertson, and her daughter is a Cuneo.  My aunt was living on Lummi for years.  The world is such a small place! 
Dave
Left side 24x23x21
"its pretty small, we should just watch it for a couple years" said the neurosurgeon.

donjehle

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Re: new here
« Reply #5 on: February 01, 2022, 05:52:14 pm »
Hi Dave,

What the neurosurgeon told you sounds crazy to me, but then I'm completely new here as well so others with more experience are able to comment better on your experience.

Actually, the main reason I am writing is that I was struck by the similarities of our names.  You are a D. Ehle, and I am a D. Jehle.  It's rare that I find someone with a last name close to mine.  And to think that we both are new here.

I hope your second opinion gives you the kind of care you need to have!
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.  Next MRI scheduled: 7/29/22
No treatment yet.

Ehle, Dave

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Re: new here
« Reply #6 on: February 02, 2022, 08:04:40 pm »
Hi Don!  I logged in and was immediately struck by the similarity in the names as well.  I am curious about where it comes from?  and how it is pronounced?  we have always pronounced Ehle as Ale; is yours pronounced Jail? 

What is your AN story?
Dave
Left side 24x23x21
"its pretty small, we should just watch it for a couple years" said the neurosurgeon.

donjehle

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Re: new here
« Reply #7 on: February 03, 2022, 08:22:51 pm »
Hi Dave,

My last name comes from Germany, and I have been told that it is pronounced much different over there than how my family has pronounced it over here.  Someone told me that in Germany, that the 'J' is pronounced like a 'Y'. and it was something like, "yeeler", but I don't speak German and I really don't know if that is true.  My family has pronounced it like "Jailee".  So, it's a little different than how your name is pronounced, but I like how your name is said.

My AN story is that on the evening of November 4, 2021, my tongue started burning whenever I took a drink of anything.  By the next morning, I had a little hearing loss in my left ear and tinnitus began.  By the next day, my equilibrium started to go.  I went to my primary care physician and she ordered an MRI, put me on steroids, and referred me to an ENT doctor.  The MRI revealed a very small AN, and the ENT doctor recommended the watch and wait approach which I agreed to because the AN was so small.  But then a month later, I lost almost all my hearing in my left ear.  I went from functional hearing to profound hearing loss in a month's time.  The ENT doctor referred me to a neurosurgeon at Emory in Atlanta who said that I needed to wait another six months and have another MRI to document the growth of the AN.  But I am currently seeking a second opinion (which sounds like what you have done as well). I have begun vestibular therapy which is helping my balance to improve.  I am still able to work as well, and I'm hoping with improved balance that I can continue working.  But time will tell for both of us.

I truly hope that you continue to maintain your sense of humor and that it goes well with Dr. Akagami!  It's great to have a supportive wife and church community.  I'll be praying that your future goes well!

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.  Next MRI scheduled: 7/29/22
No treatment yet.

Ehle, Dave

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Re: new here
« Reply #8 on: February 03, 2022, 08:32:02 pm »
it hit you fast!  I figure mine has been lurking away for a few years.  Interesting twist on name pronunciation.  I will add you to my list for prayer as well.  Good luck with the consult!  as Mr Petty said-the waiting is the hardest part. 
Dave
Left side 24x23x21
"its pretty small, we should just watch it for a couple years" said the neurosurgeon.

donjehle

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Re: new here
« Reply #9 on: February 03, 2022, 09:00:28 pm »
Thank you for your prayers, Dave!

Please post an update after you see Dr. Akagami.  I would love to see what he says about your "little acoustic neuroma."
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.  Next MRI scheduled: 7/29/22
No treatment yet.

Lillia Moor

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Re: new here
« Reply #10 on: April 22, 2022, 05:46:01 am »
Thanks for the information, good to be here.
It seems to me like that I will learn so many new things here.

donjehle

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Re: new here
« Reply #11 on: April 22, 2022, 03:42:24 pm »
Thank you for your first post, Lillia Moor!

There is a lot of helpful information on these forums.  Everyone's journey is a little different, but you can find plenty of things here that might benefit you on your journey.  Please do not be shy about asking any questions you may have.  We are rooting for you!
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.  Next MRI scheduled: 7/29/22
No treatment yet.