Author Topic: MIA - I'm back :)  (Read 28882 times)

Ernie Haire

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Re: MIA - I'm back :)
« Reply #15 on: March 09, 2016, 02:08:28 PM »
We will keep you in our thoughts and prayers. We hope that there is a simple solution and a speedy recovery.

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Paul

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Re: MIA - I'm back :)
« Reply #16 on: March 09, 2016, 04:18:42 PM »
We are praying for you.
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Dan Pitts

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Re: MIA - I'm back :)
« Reply #17 on: March 10, 2016, 02:42:45 PM »
Update on my right ear.  Since it is still leaking after almost a year, the Dr has ordered a CT scan for this Friday.  My right eardrum is now not vibrating at all and he doesn't know why.  So, keeping my fingers crossed for a simple solution.
Probably from all the smacks on the other site  ;)
Our prayers are with you as well, Susan

Susan Mouw

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Re: MIA - I'm back :)
« Reply #18 on: March 10, 2016, 03:14:58 PM »
Update on my right ear.  Since it is still leaking after almost a year, the Dr has ordered a CT scan for this Friday.  My right eardrum is now not vibrating at all and he doesn't know why.  So, keeping my fingers crossed for a simple solution.
Probably from all the smacks on the other site  ;)
Our prayers are with you as well, Susan

Yeah, I think you need to start standing on my other side - maybe you can knock whatever is in that ear free. :)


For everyone else - no one was actually smacked in the making of this, or any other, post.  lol
Susan Mouw
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Dan Pitts

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Re: MIA - I'm back :)
« Reply #19 on: March 14, 2016, 09:50:44 AM »
Update on my right ear.  Since it is still leaking after almost a year, the Dr has ordered a CT scan for this Friday.  My right eardrum is now not vibrating at all and he doesn't know why.  So, keeping my fingers crossed for a simple solution.
Probably from all the smacks on the other site  ;)
Our prayers are with you as well, Susan

Yeah, I think you need to start standing on my other side - maybe you can knock whatever is in that ear free. :)


For everyone else - no one was actually smacked in the making of this, or any other, post.  lol
Susan, have you gotten any news yet?

They did the CT scan Friday and I'm sitting in the drs waiting room now to see if they have any answers.
« Last Edit: March 14, 2016, 10:07:27 AM by Susan Mouw »

Susan Mouw

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Re: MIA - I'm back :)
« Reply #20 on: March 14, 2016, 02:11:43 PM »
The good news is that there is no cyst or tumor.  The mastoid bone is filled with fluid and now they suspect that fluid is cerebrospinal fluid, coming from a leak between the brain pan and the mastoid bone.  Requires surgery and a small bone graph to fix.

ENT has referred me on to an otologist at Georgia Regional, so now I wait for that call.
Susan Mouw
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Susan Mouw

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Re: MIA - I'm back :)
« Reply #21 on: April 23, 2016, 08:56:39 PM »
Further update - the neurontologist at GRU wasn't accepting any new patients - but no one told me that for over 3 weeks.  When I learned what was going on, I picked up a copy of my records and took them to the VA.  My appt with the VA ENT is May 10th, so we'll see what they say.  Hope we don't start all over again.
Susan Mouw
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Birdcrazy

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Re: MIA - I'm back :)
« Reply #22 on: April 24, 2016, 12:02:03 AM »
 :-\ Sorry Susan to hear your door has closed at GRU. Yes it probably seems like here we go again and start all over. At least you have your records and hopefully won't be starting at square one. I have you penciled in at the top of my prayer list.
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Don

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Re: MIA - I'm back :)
« Reply #23 on: April 24, 2016, 07:02:56 AM »
Good Grief.  "What we have here is a Failure to communicate."  It seems like more and more gets lost in the fast pace of business today.  We will be praying that things are more on track at the VA and things begin to fall in place for your procedures. 

Thanks for the update Susan.  We will be thinking of you this Thursday and hope that they can put you on the path to healing.  We need you to come off the cotton balls and back on your A game.  Seriously we will hope for a good report.  Keep us posted if you will please.   
« Last Edit: May 10, 2016, 09:38:37 PM by Don »
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Susan Mouw

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Re: MIA - I'm back :)
« Reply #24 on: May 10, 2016, 09:12:36 PM »
The VA re-scheduled my appt for 5/12 at 10AM, so two more days and I'll know whether we're starting all over or moving forward.

I did read in the VA notes that a spinal tap was contemplated to verify if the fluid is cerebro-spinal fluid.  Apparently, they inject a dye and see if the fluid coming out of my ear has that same dye or not.

I've never had a spinal tap, and not sure I want one now...I may just have to learn to live with cotton balls in my ear.
Susan Mouw
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Birdcrazy

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Re: MIA - I'm back :)
« Reply #25 on: May 10, 2016, 10:30:44 PM »
All of those options Susan, and none seem appealing to me. I guess you just go with the flow and see if progress is made. Still praying for you! From my experience with dad and the VA, Progress was slow but steady. He really had some great doctors as well as med students from Creighton University and the Nebraska Med Center.
Gordon Gilliam

Susan Mouw

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Re: MIA - I'm back :)
« Reply #26 on: May 12, 2016, 06:08:22 PM »
Well, it has been an interesting, and exhausting day.  Got there at 9:45 this morning, for my appt at 10, and left at 2PM this afternoon.

First, Dr Groves (VA ENT) doesn't think it is cerebro-spinal fluid and could not detect any fluid at all.  He thinks that whatever problem I was having is clearing itself up.  He has ordered another CT scan to see if the mastoid bone is still showing fluid, so we'll see.  It has been dry before, with most of the leakage happening at night, and I can still feel the pressure of the fluid - so, we'll see.

He also ordered another hearing test, which was done this afternoon.  The really good news is that the VA does provide hearing aids!  I didn't know that, and in fact, the local VA office here in Aiken, had told me last year that they didn't.  My hearing, aside from whatever is going on with my right ear, is neural damage and "well within hearing aid range" - whatever that means. The second part of the good news from the hearing test is that the difference between right and left is not as significant as it was before.  The bad news is that the right eardrum is still not vibrating at all and with no fluid behind it, no idea why not.

I have to say that, at first, I was very aggravated with Dr. Groves - which I don't hide well - because he came in the room without any preparation at all - he had no idea why I was there or what the last year and half of history has been.  Since I know my PA in Aiken scanned all the medical records in from Aiken ENT, that made me feel somewhat frustrated. Why bother transferring medical records if they aren't going to read them?  But, at the end, Dr. Groves convinced me that we are on the right path....I think.

I was concerned that the first thing I would hear is "spinal tap" and "bone grafts", but since he doesn't think it is CSF, then he doesn't think all that is necessary...so that does make me happy.

All in all, I'm happy that when the medical condition is cleared, I can actually get hearing aids and that the two biggies (spinal tap and bone graft) are, for now, out of the picture.  It will be nice to hear the TV without having it loud enough for the next county over to know what we're watching. :)
Susan Mouw
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Birdcrazy

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Re: MIA - I'm back :)
« Reply #27 on: May 12, 2016, 11:11:17 PM »
It sounds like you made quite a bit of progress for your first visit. The hearing aide option sounds quite encouraging. The VA furnished dad with his hearing aides, but that was years ago and as with him options do change over the years. You will have to start Barry in battery training school. Dad would always tell me his hearing aide wasn't working. I would say it was probably the batteries. he would say no I put new ones in. I would check and the battery would either be in backwards or no battery in the compartment at all. If no battery I would look on the dining room floor under the table and I think dad was starting a battery garden. one ever sprouted new batteries though. I do know, dad was always sending me to the store because it seemed he was always out of hearing aide batteries. Praying for more progress on your next appointment!
Gordon Gilliam

Susan Mouw

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Re: MIA - I'm back :)
« Reply #28 on: May 19, 2016, 08:28:36 AM »
Round 2 of CT scan completed yesterday.  Appointment with the doc is 6/1.

Of course, the day before the CT scan was done, the leakage was so bad it was running down my neck.  ewww.  Believe me, that doesn't sound half as bad as it feels.  It will be interesting to see if Dr. Groves theory that my mastoid bone is no longer full of fluid holds up.
Susan Mouw
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Susan Mouw

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Re: MIA - I'm back :)
« Reply #29 on: June 04, 2016, 07:42:20 PM »
Well, we have a partial diagnosis (again?).  The CT scan revealed a gap between my brain pan and the middle ear.  Below the gap is a cloudy area, but the CT scan doesn't differentiate between just fluid and brain tissue, so an MRI is scheduled for 6/24.  This will tell the surgeon, (Dr. Mark Hoy, MUSC, Charleston, SC) whether that is just fluid or includes some brain matter.  Either way, surgery is required, with the impact of that surgery depending on what that cloud is.  This opening is called an encephalocele, somewhat common in newborns, but rare in adults.  If that is brain matter, then it is a meningesencephalocele.

I told the Dr he had to be careful - I've already lost my looks and my brain is all I got left. :)
Susan Mouw
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