Author Topic: Another new guy...  (Read 4019 times)

dwilliams35

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Another new guy...
« on: April 24, 2017, 04:03:56 pm »
Got diagnosed about a month and a half ago,  10mm x 5mm at this point.   I had a sudden almost total hearing loss in the right ear,  went to the ENT.  They prescribed an MRI and prednisone, I got the majority or all of my hearing in that ear back about five days later, and an MRI and subsequent diagnosis later that week..   

I already had hearing aids,  although this was my GOOD ear..  Too many years of shooting and power tools..

I went and saw their associated neurotologist a few weeks later,  and moved basically into a wait and see mode with a second MRI supposed to happen in September.  During that visit,  he did a "drunk test" and that was the first time I noticed my balance was affected.  I may very well have just not noticed a problem before that, but I dang sure do now.  I sent an e-mail to that neurotologist's office saying "is this what I can expect"?  (dizzy spells quite often through the day, balance issues, etc.: I haven't "wiped out" yet from losing balance, but it's certainly noticable.)   They then recommended another Audi test and an ENG test.  I'm not sure just what that will tell them besides "take another MRI"?  It's scheduled for week after next, but everything I've read about that leaves me with "just what good is that going to do?  We already KNOW what the problem is"..  Anybody have any revelations for me on that?

This has certainly occupied a healthy dose of my thoughts since the diagnosis,  and my few days as 1/2 deaf have left me thinking that I REALLY, REALLY don't want to lose that for good..  I'm sure I'm overreacting there, there's a lot of people that have handled it better than I'm giving myself credit for, but that was an eye-opener..  Fortunately it is apparently quite small and I've got some time to think about this.  Unfortunately, I've got some time to think about this.... ::)


ANSydney

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Re: Another new guy...
« Reply #1 on: April 24, 2017, 07:21:05 pm »
What is important is the size and growth rate. If the tumor is not growing, you've achieved what radiosurgery is aiming to achieve.

dwilliams35

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Re: Another new guy...
« Reply #2 on: April 24, 2017, 09:06:07 pm »
Well, it will take a second MRI to tell if it's growing or not, right?  I'm just not sure what this ENG test will prove besides that my balance is affected, which I already knew.

voron999

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Re: Another new guy...
« Reply #3 on: April 25, 2017, 08:15:50 am »
Well, it will take a second MRI to tell if it's growing or not, right?  I'm just not sure what this ENG test will prove besides that my balance is affected, which I already knew.

Correct:  once you have your initial MRI and have an established baseline, then the second MRI should tell if there is significant growth taking place. I am in the same boat. My second MRI is to be in September.

Balance: this is just a theory, but physical activity involving balance training *might* mitigate the issue. This is one of those things where "if you don't use it - you lose it" logic may be working. By the balance-involving exercise brain is actively pressured to compensate and readjust if the issue is present; the brain is a really, really powerful thing and is vastly underused and so needs to be taken advantage of (purely theorizing here, but I do believe into my own intuition).  I myself walk a lot (this is my daily commute), run, play soccer with the kids (this is my way of coaching). Nothing to lose - everything to gain!
« Last Edit: April 25, 2017, 08:25:12 am by voron999 »
Jan 11, 2016: 4 x 3 mm nodule in the left ......consistent with an acoustic neuroma.

gary.s

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Re: Another new guy...
« Reply #4 on: April 25, 2017, 09:56:11 am »
I am also waiting for my second MRI to determine if my tumor is growing or not. I am scheduled for the MRI on May 8 and then the neurology appointment on May 11. We are establishing a baseline to see how stable the AN is. Watch and Wait is what I am doing.

My balance has been an issue for a few years now. I have episodes where I am off kilter for weeks at a time, then it improves. I walk each day and find when I focus on my balance, I am off balance a lot. When I don't think about it when walking, I do much better. Mind over matter.



voron999

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Re: Another new guy...
« Reply #5 on: April 25, 2017, 12:47:26 pm »
........... I focus on my balance, I am off balance a lot. When I don't think about it when walking, I do much better. Mind over matter.

The balance is really an automatic function of the brain and best left alone to do what it does , I would think.
Think of it, the body reacts intuitively much, much quicker on its own than if you try to process the situation.  Just walk/run/play as much as practical and force the stimulation that way, and let the brain thing adapt on the background.
Jan 11, 2016: 4 x 3 mm nodule in the left ......consistent with an acoustic neuroma.

dwilliams35

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Re: Another new guy...
« Reply #6 on: April 25, 2017, 01:42:36 pm »
I am also waiting for my second MRI to determine if my tumor is growing or not. I am scheduled for the MRI on May 8 and then the neurology appointment on May 11. We are establishing a baseline to see how stable the AN is. Watch and Wait is what I am doing.

My balance has been an issue for a few years now. I have episodes where I am off kilter for weeks at a time, then it improves. I walk each day and find when I focus on my balance, I am off balance a lot. When I don't think about it when walking, I do much better. Mind over matter.
  It's hard to tell whether my balance was previously an issue or not: I really, really didn't notice a problem until such time that the doctor did the "drunk test" and showed me that yes, I had some balance issues.  It may be just a function of the fact that now I know I'm supposed to have a problem and thus recognize it when it shows up,  but ever since that appointment I have had the balance issues.  The only other possibilities is that it's growing faster than I hoped, or that initial inflammation that killed my hearing for a few days (solved by the prednisone)  did some lingering damage that I'm seeing now that I'm off the steroids...   I'm still just trying to figure out the upside on this ENG test: I don't see anything it is going to prove besides that I've got symptoms of something that the MRI has already pretty much established..

TomB66

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Re: Another new guy...
« Reply #7 on: April 29, 2017, 03:19:53 pm »
Other than the recent 'drunk test", think about your balance in the dark.  Have you noticed in recent years that when you get up out of bed in a dark room you are well balanced?  And at that time did you blame it on just being tired and not awake?  I have to say once I found out I had an AN, I looked back at that symptom that I had for a couple of years prior.
1.6cm retrosigmoid, 10/1/2015.  Living the dream....

Blw

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Re: Another new guy...
« Reply #8 on: April 29, 2017, 06:51:39 pm »
I had every test at the clinic. I think ENG could be ENoG, which is looking for involvement of the facial nerve. It is possible the tumor is coming of the facial nerve. If so, surgery is a bad choice because if you cut that nerve, you are in for a lot of trouble. Mine did involve that nerve, so I went radiation, specifically, Gamma knife, which has fantastic outcomes for facial nerve schwannomas. I would not worry about balance. That was my first symptom and I couldnt walk without my head down, looking only 5 feet ahead of me. In the dark, I had to hold something because you don't have the visual cues. It will come back as your brain adjusts.

dwilliams35

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Re: Another new guy...
« Reply #9 on: April 30, 2017, 03:27:56 pm »
I had every test at the clinic. I think ENG could be ENoG, which is looking for involvement of the facial nerve. It is possible the tumor is coming of the facial nerve. If so, surgery is a bad choice because if you cut that nerve, you are in for a lot of trouble. Mine did involve that nerve, so I went radiation, specifically, Gamma knife, which has fantastic outcomes for facial nerve schwannomas. I would not worry about balance. That was my first symptom and I couldnt walk without my head down, looking only 5 feet ahead of me. In the dark, I had to hold something because you don't have the visual cues. It will come back as your brain adjusts.
Electronystagmogram.  It's definitely aimed right at the balance issues that got this going, but I'm just still wondering just what they're trying to prove; they already have the MRI that shows the AN, this just seems redundant.

dwilliams35

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Re: Another new guy...
« Reply #10 on: April 30, 2017, 03:29:54 pm »
Other than the recent 'drunk test", think about your balance in the dark.  Have you noticed in recent years that when you get up out of bed in a dark room you are well balanced?  And at that time did you blame it on just being tired and not awake?  I have to say once I found out I had an AN, I looked back at that symptom that I had for a couple of years prior.
there might have been some of that before, but not to this level.  Back then I just blamed it on the wife's cat I just tripped over, however..  now I've got a cat AND an AN to lay the blame on..

Blw

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Re: Another new guy...
« Reply #11 on: April 30, 2017, 05:35:13 pm »
I had every test at the clinic. I think ENG could be ENoG, which is looking for involvement of the facial nerve. It is possible the tumor is coming of the facial nerve. If so, surgery is a bad choice because if you cut that nerve, you are in for a lot of trouble. Mine did involve that nerve, so I went radiation, specifically, Gamma knife, which has fantastic outcomes for facial nerve schwannomas. I would not worry about balance. That was my first symptom and I couldnt walk without my head down, looking only 5 feet ahead of me. In the dark, I had to hold something because you don't have the visual cues. It will come back as your brain adjusts.
Electronystagmogram.  It's definitely aimed right at the balance issues that got this going, but I'm just still wondering just what they're trying to prove; they already have the MRI that shows the AN, this just seems redundant.

Had that one too, plus warm water in the ear, and had my head jerked to follow eye movement. Had the spinning chair and the movable floor. I even had one not covered by insurance, about $400. About three hours altogether. The combination of tests may help them pinpoint the issue. If your MRI would have been negative, there are a number of other pathologies with overlapping symptoms. I think a lot of ENTs think AN late in the game.

dwilliams35

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Re: Another new guy...
« Reply #12 on: May 10, 2017, 08:46:04 pm »
Heading in for that VNG test tomorrow; they went from calling it eng to VNG in the interim; same thing, but with goggles instead of electrodes to check your eye movements..  it's supposed to do some things better than the ENG.  maybe I'll also get to find out just what they're trying to figure out with this exercise...

MarkS

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Re: Another new guy...
« Reply #13 on: May 11, 2017, 10:28:54 am »
As I understand it, these things growly only very slowly - on the order of 1mm per year - so it seems unlikely a second MRI could accurately determine growth rate unless it's a LONG wait between MRIs.  Do I have this right, y'all?
2.2 x 2.3 x 2.6 AN right side
Retrosigmoid 3/21/17
MD Anderson, Houston

juliawilson

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Re: Another new guy...
« Reply #14 on: May 11, 2017, 04:37:25 pm »
One thing I have learned is to ask questions---about everything. If you don't know why a test is being ordered, ask why and what it is supposed to do, and why it is necessary at this point. I also keep a list of questions to ask---written down so I don't forget!