Author Topic: MIA - I'm back :)  (Read 28548 times)

Birdcrazy

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Re: MIA - I'm back :)
« Reply #30 on: June 06, 2016, 08:29:43 AM »
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, this doesn't surprise me that your condition is common in newborns but rare in adults. From past experience and the current website fiasco, you have proven to be a rare commodity. The ABC would have really been in a major bind without your expertise and hard work that you put forth to resolve this issue. Thanks again as I know you had other issues pending with your medical condition.
Gordon Gilliam

Susan Mouw

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Re: MIA - I'm back :)
« Reply #31 on: June 06, 2016, 08:57:23 PM »
Update:  VA MRI office called me this morning.  They had a cancellation and I was bumped to the top of the list.  My MRI is now scheduled for this Wed, 6/8, at 9 AM.

Sure am glad I got the forum back up and running...
Susan Mouw
Sand Castles Farm
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Clif Redden

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Re: MIA - I'm back :)
« Reply #32 on: June 08, 2016, 06:49:27 PM »
Gordon is right! Thank you and great job, Susan.

Susan Mouw

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Re: MIA - I'm back :)
« Reply #33 on: June 10, 2016, 08:00:18 AM »
MRI is done...now we just wait.

Thanks, everyone, for all the prayers and support.  To say I'm not nervous about this surgery (craniotomy) would be a lie.
Susan Mouw
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Birdcrazy

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Re: MIA - I'm back :)
« Reply #34 on: June 10, 2016, 10:43:45 PM »
Susan, you are still at the top of my prayer list.
Gordon Gilliam

Susan Mouw

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Re: MIA - I'm back :)
« Reply #35 on: June 13, 2016, 09:50:11 PM »
The results of the MRI were posted on myhealth.va tonight.  I can't translate all of the following, since I haven't heard from the Dr., but there are some things that don't need translation.  This is taken exactly from the MRI: (one thing I can translate is brain parenchyma - that is functioning brain matter)

Attention to the temporal bones there is a 6.5 x 4.4 mm
well-circumscribed lobulated fluid collection within the right
epitympanic space with a direct connection with the middle
cranial fossa sulci of the temporal lobe. Erosion and defect of
the right tegmen tympani with the brain parenchyma at the site of
the defect without passing through the defect into the
epitympanic space. There are adjacent inflammatory changes within
the right mastoid air cells. No diffusion restriction to suggest
cholesteatoma.

Impressions:
1. Right epitympanic meningocele with communication to the middle
cranial fossa sulci.  2. Brain parenchyma at the site of the
defect of the right tegmen tympani without definite
encephalocele.  3. No evidence of cholesteatoma.
Primary Diagnostic Code: SIGNIFICANT ABNORMALITY, ATTN NEEDED
Susan Mouw
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Don

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Re: MIA - I'm back :)
« Reply #36 on: June 13, 2016, 10:18:15 PM »
"ATTN NEEDED"

Isn't it great when they finally pay attention to the patient, listen and finally come to the same conclusion. 
We all are still praying for you Susan.  I hope they get all of this rectified soon and get you on a fast path to healthy.     
Don Cash
Matthew 4:9

Birdcrazy

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Re: MIA - I'm back :)
« Reply #37 on: June 14, 2016, 12:16:06 AM »
Susan, we are praying and pulling for you! As shown with the recent bout with the website, you are a fighter and a winner! From your post, it appears you have the full attention from the VA on your health issues. Best wishes for a full and speedy recovery!
Gordon Gilliam

Susan Mouw

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Re: MIA - I'm back :)
« Reply #38 on: June 15, 2016, 10:36:24 AM »
Dr Groves just called me from the VA in Augusta. There is definitely brain covering (dura) poking through the hole between my brain pan and the middle ear and there may, or may not, be brain matter as well - won't be able to tell that definitively until they're actually looking at it in surgery.

He is trying to do a referral to the VA ENT clinic in Charleston, with Dr. Myer, but the VA system doesn't offer Charleston as one of the options for an automatic consult, so he has to kinda go around the VA bureaucracy to get me down there.
Susan Mouw
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Birdcrazy

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Re: MIA - I'm back :)
« Reply #39 on: June 15, 2016, 03:52:37 PM »
Keep us posted Susan.
Gordon Gilliam

Susan Mouw

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Re: MIA - I'm back :)
« Reply #40 on: June 27, 2016, 07:28:40 PM »
Minor update, but progress :)

I just received a message through the VA online that Dr Groves has completed the IFC (Inter Facility Consult) request and Dr. Myers (the Charleston otoneurologist) has it and is reviewing it.
Susan Mouw
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Susan Mouw

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Re: MIA - I'm back :)
« Reply #41 on: July 20, 2016, 07:26:08 PM »
Have you ever wondered what is the least expected thing you expect a Dr. to say? Well, me neither, but, if I had, I wouldn't need to wonder any longer. (It's all good)

Dr. McCracken walks in the room, shakes mine and Barry's hands, introduces himself, then starts in with the usual..."how are you doing, etc", then stops, puts one arm across his chest, rests his other elbow on that arm, with that hand stroking his chin and goes,

"Do you mind if I bring the resident in, too? You have a really interesting case and I'd like for him to hear it." then he wheels around and is out the door before my jaw hits the bottonmost level it can go.

I look at Barry and go "Well that's not a promising start! Glad they already took my blood pressure first!"

"Yeah, right!" Barry says, "ZOOOOM" he goes with his hand describing a very high arch - illustrating what my blood pressure just did. We're both laughing, but kinda serious at the same time.

Barry puts on his best good ol' boy accent (he's from NW Iowa, so it's a stretch). "C'mere Earl, ya jes gotta hear this!"
"C'mon Ear, ya ain't nevah gonna b'lieve this!" and so forth.

By the time, the resident comes in, we're both laughing so hard. I hope he doesn't mistake those tears in my eyes for sadness, but pretty sure he didn't.

And, that was how my long-awaited, and much worried over (I think I slept 2.5 hours last night) visit with the surgeon, who I'm going to let cut open my brain, went.

But, it's all good. One thing is I've lost 17 lbs - not from trying, but from all the headaches and accompanying nausea, when all I eat is dry toast for a couple of days. And, because this stuff is also draining down my throat, food all tastes different and not in a good way.

Here's what I've learned. They can go in a little hole they drill in the back of your ear to fix this, but won't be able to do that with mine, due to positioning (:( ). So, they will cut a little "window" into the brain just above the ear, lift the brain up, cut off the (already dead) portion of whatever brain is hanging down through the gap, then slap a graft on the gap, and stitch me back up. I won't even see the little cut out, as they cut the scalp along the back of the ear, lay the scalp back, cut the skull, then place the scalp back. With my current hairstyle, he said it won't even be hardly noticeable.

The surgery takes about 4-5 hours, then I spend a day in ICU, then get moved upstairs. If no problems, I can go home the next day - so a total of three days in the hospital.

Risks are minimal - other than the standard risks any time you go under anesthesia. One of the risks, loss of speech, is non-existent for me, since I'm right handed and my speech center is on my left side. (whew). They don't even do the anti-seizure medicine following this surgery any longer.

I might experience some dizziness after the surgery for a bit, but overall recovery is probably 3-5 weeks.

Dr. McCraken made me feel much more assured about this whole deal and I left in a much better state of mind than I arrived.

I should hear the exact date within the next week, but Dr. McCracken said it will probably be Sept 13th, but definitely the second week of Sept. I have to go back Sept 1st for another hearing test and to have the anesthesiologist clear me for surgery.

I can probably forget about any October poultry shows (crying), but I should be ready to roll again in November! Maybe I'll even be able to hear again!
Susan Mouw
Sand Castles Farm
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Birdcrazy

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Re: MIA - I'm back :)
« Reply #42 on: July 21, 2016, 08:05:38 AM »
Susan, Your report sounds encouraging. I will continue to pray for your upcoming surgery and rehab time. What is missing a few poultry shows when your outcome sounds so favorable. You will certainly be missed at those SE shows, but I'm sure everyone understands. Tell Don to buckle his belt tighter and has to pull some more of the load while you are recuperating. No excuses from him because we all know that he can handle it! It sounds that Barry is giving you great support and keeping your blood pressure monitored. Tell him Thanks! Just take it easy and don't overdue during your recoup period. We all know you are a workaholic and tend to work even into the wee hours of the morning. Enough of that for now, you know we voted you in for the long haul! Best wishes!
« Last Edit: July 21, 2016, 11:35:36 AM by Birdcrazy »
Gordon Gilliam

Susan Mouw

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Re: MIA - I'm back :)
« Reply #43 on: July 21, 2016, 09:25:39 AM »
Susan, Your report sounds encouraging. I will continue to pray for your upcoming surgery and rehab time. What is missing a few poultry shows when your outcome sounds so favorable. You will certainly be missed at those SE shows, but I'm sure everyone understands.

We have several new members in Alabama and I was really hoping to meet them at the Anniston, AL show.  But it is the weekend of Oct 10, 5 hours away, and I don't think Barry's going to let me take off for Alabama three weeks after major surgery - even if I feel like it, which I kinda doubt.  There is a small show about 45 mins from here on Oct 29, so I'm going to shoot for that one - it will be a good trail run for my first "over-nighter" later in November.

Tell Don to buckle his belt tighter and has to pull some more of the load while you are recuperating. No excuses from him because we all know that he can handle it! It sounds that Barry is giving you great support and keeping you blood pressure monitored. Tell him Thanks!

Barry keeps me laughing - which is a good thing.  I am a bit OCD and can tend to get obsessed with things - just a wee bit.  ;)

Just take it easy and don't overdue during your recoup period. We all know you are a workaholic and tend to work even into the wee hours of the morning. Enough of that for now, you know we voted you in for the long haul! Best wishes!

Ok...who told on me??  LOL

I'm not really a workaholic - I just get very focused on a project and don't want to quit until it is done...
Susan Mouw
Sand Castles Farm
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Susan Mouw

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Re: MIA - I'm back :)
« Reply #44 on: August 04, 2016, 11:55:09 AM »
Well, we have a date and time for the surgery.  Sept 14th, 8AM, Dr. McCracken, at the VA Hospital in Charleston, SC. The surgery should last 4-5 hours, I've been told.

I go back Sept 1st for the pre-surgery stuff and to have anesthesiology clear me for surgery.
Susan Mouw
Sand Castles Farm
http://www.sandcastlesfarm.com