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Author Topic: Two down...five more added...  (Read 2931 times)

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Offline LongTimeSurvivor

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Two down...five more added...
« on: November 16, 2013, 02:59:06 PM »
It was nice this past summer to have two issues resolved in my favor...even if one isn't exactly finished with...but getting there. Of course, when that happens a whole bunch of new stuff decides to hop on where the old stuff fell away.

Had been having a problem with my left eye starting this past June just in time for my vacation. Let it go for a bit figuring it would work itself out.

To quote the late Ms. Krabappel..."HA!"

Kept getting worse so finally went to my doc and he gave me some drops to take care of it. Didn't. So he gave me some more drops to take care of it. Didn't. Decided I needed to see a specialist. Went to the specialist and he gave me drops to take care of it. Didn't.

Sense a pattern here?

Finally after four months of hell the specialist figured out the problem...Floppy Lid Syndrome. Yes, the third grader in me immediately reared his head. But I punched him and he went away. Apparently what happens is your lid inverts while you sleep and over time, if you don't react in your sleep to this, your lid gets stretched and eventually your eyeball and underside of the eyelid are constantly in contact with your pillow case and bed sheet. Not good.

So now I have to spend the next few months taping my eye shut before going to bed. This is to keep the lid from inverting. So far so good. I go back in February to the specialist so he can see how things have sorted themselves out. If my lid is still floppy I may have to have an operation to take out excess skin. Apparently you're awake during this procedure, just heavily sedated. I think I'll drink a bottle of vodka before hand to make sure I'm well sedated should this be the direction the curing process goes.

However, it turns out about one-third of the people who have this also have Obstructive Sleep Apnea. Since I was already planning on getting a sleep test done in the new year this wasn't so much a surprise as a confirmation.

Over the past few years I've grown increasingly fatigued. Didn't really pay attention since it came on so slowly. But the past year I've been phasing in and out of consciousness at strange times. I'll be at one subway stop and then suddenly it seems I've just transported to a totally different one. So this and the Loopy Lid compelled me to find out what's going on.

If confirmed I'll probably have to first try what is called CPAP. Basically an oxygen masked fitted to your face to force air into the throat using positive pressure so that the throat doesn't close which causes the problem. If I can't handle that, and apparently a fair number can't, the next option is to have another operation...Maxillomandibular advancement simultaneously with Genioglossus Advancement . This involves cutting the upper and lower jaws loose and advancing them forward and then doing the same for the tongue. Apparently has a high success rate. Added bonus you've got a more pronounced chin!!!

Downside is you're in the hospital for a few days. You're limited to a liquid diet for about six weeks. And the insurance company makes you go through fifty million other procedures that aren't as effective but are cheaper before they'll approve you getting this done. And everyone wonders why health care is so expensive.

Anyway, that's all for next year. In the interval before the new year there's more then enough time for something else to go wrong...which in my case...it usually does.
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Offline BT65

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Re: Two down...five more added...
« Reply #1 on: November 16, 2013, 04:47:26 PM »
I have never heard of that-droopy lid.  Interesting. 

You should hit up Ms P on the sleep apnea-I believe he was diagnosed with this.  The surgery you described sounds awful, to me, but I can understand needing to get it under control.  Good luck with all this, and please keep updated on the eyelid thing!
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Offline Theyer

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Re: Two down...five more added...
« Reply #2 on: November 17, 2013, 03:54:28 AM »
As my late Mother often said "gettin old ain,t for sissies " She also thought that teaching me to cook aged 12 was a bad idea because it would turn me into a homosexual so Mama,s saying,s have to be seen in there full light.

The diagnosis when it came was so simple, I guess its one off those conditions that needs all meds to fail before the Doc,s consider it.

There is a lot off posting,s re. Sleep Apnea and your right Betty Miss P did discuss it.

The Jaw operation LTS, sounds very extreme , I hope it does not come to that conclusion.

Are you sleeping OK now that your taping your eye lids ?

Good luck with it all ,LTS

"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline AlanBama

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Re: Two down...five more added...
« Reply #3 on: November 23, 2013, 03:29:13 PM »
hey LTS...

so what's the status with your sleep study?  I have been on CPAP since 2009; it made a HUGE difference in my life.   My partner had a sleep study done awhile back, and how HE is on CPAP also.   We are wired up in our bedroom so we look like we're in some kind of nursing home!  LOL   He has already started to feel better.

I hope you get some answers....

HUGS, Alan

PS   I can give you some practical advice about a CPAP mask.  It took me several years and MANY tries until I hit on the correct one.   My partner picked the same one as me, and so far he is doing fine with it.

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Miss Philicia

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Re: Two down...five more added...
« Reply #4 on: November 23, 2013, 07:11:24 PM »
Oh yeah, when I first had (undiagnosed at the time) sleep apnea I was falling asleep on the subway commute home and often missing my station. Not cute when you end up in a dangerous section of Crooklyn. Just get your doctor to send you for a sleep study. Since you are in NYC there's a hospital just for ENT stuff affiliated with Mt. Sinai on 14th St. I think I had one sleep study done there and another one done at some other hospital. Anyway, my diagnosis was not severe sleep apnea -- it was whatever level is under moderate so my private insurance balked at giving me a CPAP machine. So I went over a decade living with this, which probably contributed to my developing hypertension by the age of 40 (way to go insurers -- thanks! It's like when you denied me viral load testing for eight months the first year that came out... fuckwads)

So when I moved to Philadelphia and was on Medicare by then I went to the sleep center of Pennsylvania Hospital and my doctor wrote some important book on sleep, founded this center in the 70's, and has been on Oprah -- I mean there's nothing more important than Oprah. There are now other options than a CPAP if your diagnosis is less than the severe level. Like there's some contraption that is like a mouth guard for people that grind their teeth but it pulls the lower jaw out enough to open up the air passage, or in my case they first sent me to an ENT specialist and I had surgery to fix my deviated septum and voila I passed my next sleep test so supposedly I no longer have sleep apnea (though I don't totally believe them because sometimes I snort so loud sleeping -- like a pig, not a normal snore -- that it makes me question how I passed that sleep study). I may take one again at some point in the future if I feel this worsening.

Anyway, I have friends that use CPAP machines and they say once you get used to them you'll be amazed at how well you sleep and how refreshed you are during the day, void of fatigue.
"Iíve slept with enough men to know that Iím not gay"

Offline LongTimeSurvivor

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Re: Two down...five more added...
« Reply #5 on: November 25, 2013, 07:11:42 PM »
AlanBama - have to wait to the new year before I will be getting into the sleep studies. It's end of year for insurance and I don't feel like spending $2,000 before end of December and then having to spend another $2,000 in January. Figure it's been this long what's another month or so.

Theyer - I was sleeping without my eyelid taped shut. The problem was I wasn't responding to my eyeball rubbing the pillow case and sheets by turning over. With my eye lid taped shut I'm probably still doing the same thing just my eye lid can't be pulled back exposing my eye. Find out in February what's next. Doc felt it would probably be an operation to take out some of the excess skin and tighten up the lid. (Don't even think of going there...you know I know what you're dying to write...just don't...I still have undeclared secret powers to unleash on the unwary and deserving.)

Whether I have to wear a CPAP mask or have the operation I fully expect to have a night to day experience. Heard from too many people who have this to doubt that. One gentleman had the operation. He said it was bloody awful, as in awfully bloody, but if he had to do it again he would. He's alert, full of energy and only sleeps about 6 hours a night. Wakes up completely rested. Hear the same about the mask. So...just marking time till the new year.

Thanks for the replies. I'll keep you posted as I find out things. Right now am waiting to hear about a 24 hour heart monitor session. I've been getting dizzy and almost fainting more than usual. Use to happen once in a great while. Now it's happening weekly. First cardio was okay. This last was to see if my heart has an erratic beating pattern. If nothing is off with that when I see the Doc on December 5th we'll discuss the next steps. Isn't health grand!!!
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