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Author Topic: You're gonna move what to where!!!  (Read 7721 times)

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Offline LongTimeSurvivor

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You're gonna move what to where!!!
« on: March 24, 2014, 10:00:45 PM »
I have decided to go forward and try to get my insurance company to approve my undergoing an MMA. Have been less than thrilled with the CPAP. Between the face sores and nose feeling like someone punched it all night I don't see CPAP as something I want to have to endure for a lengthy time.

My first appointment at Mt. Sinai Hospital in Manhattan is set for April 7th. X-rays, pics, maybe a mouth mold. After the surgeon has gone over all that I'll be called in for a second workup. Take care of anything that hasn't already been taken care of pre-op wise. Then everything goes off to the insurance company for pre-authorization. Have no idea how long that will take.

Decision is based on severity of my OSA and the fact that I have insurance that covers it now. Have no idea about the future and would rather not wait to find out. Plus I'm still relatively young and feel recovery is easier at 55 than at 65.

Will post more as I find out what's happening...
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Offline Jeff G

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Re: You're gonna move what to where!!!
« Reply #1 on: March 24, 2014, 10:13:03 PM »
I hope you get relief . I had to google that procedure to see exactly what it entails . I saw a ENT surgeon last summer about a similar problem and he suggested an operation that would move my tongue forward ... I declined .

I have been putting it off but I really need to get a sleep study done but have opted to treat other pressing LTS malady's instead and it keeps getting put on the back burner .

Please post pics and update us .

Offline leatherman

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Re: You're gonna move what to where!!!
« Reply #2 on: March 24, 2014, 10:43:59 PM »
sorry to hear the CPAP wasn't the trick; but at least you've still trying to get some improvement. Hang in there and best wishes!!!
leatherman (aka mIkIE)

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"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015 Reyataz/Norvir/Truvada

Offline Theyer

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Re: You're gonna move what to where!!!
« Reply #3 on: March 26, 2014, 11:33:08 AM »
Agree anything that needs to done will be far better dealt with at 55 than 65 , good luck with it all . Are there any insurances that you do not have to fight with , or are at least Doctor decided , I have answered my own ? but how much roughly would it cost to have the medical care UK/Ireland/Benelux/Nordic folk have ?
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #4 on: March 28, 2014, 07:41:30 PM »
Don't know the cost but the procedure is covered by my insurance. They just have to pre-authorize it. Since I'm very much in the severe category (severe starts at 30 episodes per hour and I clock in at 61 with no REM sleep) I'm hoping that the insurance company just gives in. I'm sure my surgeon will present a persuasive case.

As to pics...you want during surgery or just after? What about when they clean the blood clots out of my nose? It's a lovely procedure. Actually hope to have a friend take pics all along. After all, how often does a quarter of your head get moved to a new location.

Jeff G, get the study done. If you have sleep apnea, and it can be treated, some of your other problems might subside. When you're worn out all the time a lot can go wrong. For me it's not just the physiological part. It's also the social part of my life. All I want to do after work, or on the weekends at dark, is to go to bed. I have no energy to even try to socialize much less get frisky should the occasion "arise."

Anything is better than my current existence...

All right, that's about it for now. If you have questions ask away. I'll do my best to answer.
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Offline Jeff G

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Re: You're gonna move what to where!!!
« Reply #5 on: March 28, 2014, 07:51:26 PM »
My sinus surgery was pretty gruesome but it looked allot worse than it felt . I had a friend stay for a few days and he would run out f the room every time I blew my nose .

Best of luck and let us know how you make out .

Offline Theyer

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Re: You're gonna move what to where!!!
« Reply #6 on: March 29, 2014, 06:03:59 AM »
Really can life with no details however all the best with it . You are going to feel better after having REM sleep again.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #7 on: April 12, 2014, 03:42:51 PM »
It's been a busy week. Monday went to Mt. Sinai for x-rays and to discuss the operation with part of the surgical team. Wednesday was back at Mt. Sinai for special measurements, photographs of my head and mouth molds. Friday was for a CT scan so the surgical team can use the 3D image of my head to plan the operation. Monday have to call to set up the next meeting.

If it weren't for the insurance company having to pre-authorize the operation, I think my doctors would have me on the table in the next week or two. As it is I might be there mid-May if the insurance company doesn't drag their feet. I think it's about a five hour operation.

I know it's not going to be a walk in the park afterward. Especially after watching the various videos on Youtube where people have posted their experiences. Don't expect my experience will be much different. Docs said plan on being at home for at least two weeks. Oh well, so much for one week of vacation.

Actually I wish the operation was tomorrow. But it isn't so might as well adapt to the time table and go with the flow. Look forward to being able to sleep and breathe at the same time. More than happy to lose the CPAP mask. Am wondering how much my lower face will change. You're not unrecognizable but there is a definite difference to deal with.

Once I have the operation I'll start a new thread. This is the before and that will be the after. If you have any questions...
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Offline Theyer

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Re: You're gonna move what to where!!!
« Reply #8 on: April 12, 2014, 06:20:03 PM »
No particular ? , I do think the wait and insurance dragging out the decision is cruel but I imagine that you know that's the system ,you are not being singled out. I wish you all the success and comfort pos , I also recognize your courage in this .
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline weasel

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Re: You're gonna move what to where!!!
« Reply #9 on: April 13, 2014, 09:25:54 AM »

       LTS ,
              I had to Google this also .    It looks like a great way to
    improve sleep and beauty :) 
      I hope it is not to painful and offer wonderful sleep .

                                                              Weasel

      PS :  I want that done !   
" Live and let Live "

Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #10 on: April 15, 2014, 06:44:17 PM »
Another step taken. Got blood test results for surgery. When I get these results it makes me wonder what exactly it is I'm sick with...

Let's see:
117 - Cholesterol
0 - Viral load
882 - T-cell
Everything else perfect...sorry, that's all the numbers I remember, my memory doesn't retain medical information very well.

Oh...
120/70 Blood pressure

You could take a blood test from when I was 20 and put it in my medical file and no one would be any the wiser. Nothing changes. Maybe at the end of my life everything will go wrong at once and I'll just explode...
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Offline Jeff G

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Re: You're gonna move what to where!!!
« Reply #11 on: April 15, 2014, 07:05:59 PM »
Nothing changes. Maybe at the end of my life everything will go wrong at once and I'll just explode...

Just don't do it at an airport, you wouldn't want that to be your legacy . 

Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #12 on: April 30, 2014, 06:56:43 PM »
Met with my Attending Surgeon today. My first meeting for this operation. But know him from my previous chin operation which he performed.

Looks like my MMA surgery will be postponed so I can have some orthodontic work done to realign my teeth. While everything fits nicely, and never had to have braces, both my front upper and lower teeth flare outward. My doc wants to bring them back to an upright position. This will allow him to advance my jaw further to open my rather narrow breathing tube.

Hope the additional ortho can be covered by insurance, but if not, am still going to go through with it. Can't see undergoing the MMA and only get middling results. Rather give myself the best chance possible to cure the OSA.

Okay...that's it for now...

Any questions, just ask.
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Offline AlanBama

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Re: You're gonna move what to where!!!
« Reply #13 on: May 02, 2014, 12:10:59 PM »
I hope this procedure works well for you!  Will be following your reports....

I've been on CPAP since 2009, so I understand; it is definitely not a "good thing" to have to deal with!  Sleeping with an uncomfortable mask strapped to your face....it is sort of like "Alien" !  (also CPAP supplies, etc are not cheap)

I'm glad your insurance will cover this, and hopefully you won't have any 'issues' with them.


HUGS and best wishes,
Alan
"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 LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #14 on: May 02, 2014, 07:47:28 PM »
The more things change...

...the more they cost...

Had my appointment with the orthodontist today. Now I'm $12,500 poorer. That is what it costs to do the necessary work on my mouth to get ready for the MMA surgery. This will probably take a year to accomplish. No surgery this year! Just a mouth full of metal with a plastic thingy stuck to my face at night so I don't croak. Really...I wonder if I can use my mouth as collateral when this is done. There must be at least $50,000 worth of work over the years. Must be worth something...

I suppose I could be depressed about all of this but I've got to save my supply of depression for other things. The work will allow the surgeon to widen my airway almost double. I figure if a quarter of my head is going to be cut loose and re-positioned I don't want to go through it for the minimum. Just have to grit my teeth...

Once I get the braces on then it's back over to my surgeon so he can pull 4 teeth to allow room for the rest of my teeth to relocate. Then back to the ortho so he can adjust the wires to start the process. Will have some limits on what foods I can eat for the time I'm wearing the braces. Nothing crunchy, gooey or sticky...hmmm...that pretty much throws out everything I eat. Hummus and tofu here I come...ugh...I think I'd rather starve.

Okay...that's where things stand for now. Any questions...ask away...
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Offline Jeff G

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Re: You're gonna move what to where!!!
« Reply #15 on: May 02, 2014, 08:20:35 PM »
Wow ... you are the new 6 million dollar man . I had to read back to remind myself that you really must have this done out of necessity . Best of luck and keep us posted . 

Offline leatherman

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Re: You're gonna move what to where!!!
« Reply #16 on: May 02, 2014, 08:37:27 PM »
wow! the things we go through for a little bit of beauty.  ;D
oh I'm sure breathing counts for something; but really after all this work your million dollar smile should stop people in their tracks.

best wishes for all this to be easy, go smoothly, and work out completely for you and your health.
leatherman (aka mIkIE)

So we put our hands up like the ceiling canít hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015 Reyataz/Norvir/Truvada

Offline Theyer

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Re: You're gonna move what to where!!!
« Reply #17 on: May 03, 2014, 04:47:36 AM »
What has to be kept in my mind is you are doing this in order to get a nights sleep which is a basic foundation block off good physical and Mental health. The cost off Dentistry is alarming. In Europe people cross boarders for Dental treatment, Viennese to Budapest, Germans to Poland. Basic Dentistry is available on the NHS in Britian and I am discovering to my cost just how basic it is.

I want to have some energy to campaign for more.

I have lost a great deal off gum and many teeth Due to horror film like mouth/Gum infections during chemo and then a diagnosis off Jaw necro{somethingorother} whereby the Jaw bone dies due ironically to the treatment I was on for osteophorois.

This means regular Dentist,s will not touch me  referring my treatment to the best Dental teaching Hospital in England as a Patient in the Reconstruction Team. So far the earliest appointment took 9 weeks.

I cannot fault the care and treatment I get when I actually get there .

I was amongst the first cohort to receive Atripla in UK. !8 months off clinical depression followed when I came off the stuff I surfed the edge off admission to Psy Hostital for being in a Manic episode, eventually a mixture off friend;s pleas, the rational part off me getting louder and 35000 $ dept saw me gallop into councilling, and a massive flop emotionally.

Approx Two years after this  the research that atripla reduced REM sleep in some to practically Zero made sense off this approx 5 year period and helped me a great deal, in coming to terms with the period.

So , Friend I think what you are doing is good planning for a future off good health, with any cosmetic pluses a happy bonus. Good luck with it all.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #18 on: May 09, 2014, 10:46:17 PM »
I swear the Universe hates me. After signing away my first born to get the orthodontics done what happens? I break a molar while eating a soft bagel. Last few times it happened while eating scrambled eggs. So maybe it's an advance in why it broke...(sigh)...and now another $1,600 to get that taken care of. I think this is the fifth one in six years.

So braces have to wait till this is taken care of. Another two weeks to wait and then get an appointment to get the brackets attached. After which I get to enjoy having four teeth pulled one after the other. Maybe I should just let myself smother. Dying is always the cheapest way to take care of problems.
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Offline Theyer

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Re: You're gonna move what to where!!!
« Reply #19 on: May 10, 2014, 03:53:08 AM »
Quote from: LongTimeSurvivor link=topic=53287.msg635438#msg635438 date=1399689977 Dying is always the cheapest way to take care of problems.
[/quote

And the evidence you have on that is , anything and nothing can go on I don't know I have not done it yet.

For all I know first thing could be some suit ,impossible to ruffle you said "Hello Ducks, well before we can get on with settling down to a contented eternity there,s the small matter off your Life on Earth account , we have various programs to suit you just settle into your stage ! bunk we will meet later and make a start. OK chuck.

Right next please

"hello Ducks , Australian Aboriginal Male , since 14 following the teachings off the old ones, straight on through chuck,"

"OK we are on a roll right next

Oh bugger your a RC Priest , there goes the day we might as well sit down............
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #20 on: May 13, 2014, 10:23:19 PM »
I can assure you Mr. Leatherman...I do not do things for a little bit of beauty.

I do them for really huge hunks of it. Literally great, big, dripping slabs of beauty. Plus, anything I do for beauty, I assure you, is not done in the interest of my health. Far from it. And the only breathing to be concerned with is the intakes of breath by everyone who passes by upon seeing the results of what I do.

Now that we have that straighten out...

Love the upswept 'do. And the bleached look really does...something. Oh yes, thank you for your kind wishes for my health...you may kiss my ring now.
Of course it's important. It's an email...

Offline leatherman

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Re: You're gonna move what to where!!!
« Reply #21 on: May 13, 2014, 10:51:30 PM »
Now that we have that straighten out...

Love the upswept 'do. And the bleached look really does...something. Oh yes, thank you for your kind wishes for my health...you may kiss my ring now.
LOL  ;D

and bleached?? that's just me letting it go back to the real color - white. Since Summer is nearly here, I'll be in the sun and pool way too much for any hair color to last. Oh wait! Wut?? Yeah, yeah. I bleached it!


do you think your teeth breaking issue is due to HIV or the meds? I had serious teeth issues in the late 90s from some of the meds - and from puking so much because of the meds. Throwing up often can cause a lot of issues. Could this be like a bone density issue?

maybe you just need a head transplant to solve ALL these issues. LOL  :-*
leatherman (aka mIkIE)

So we put our hands up like the ceiling canít hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015 Reyataz/Norvir/Truvada

Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #22 on: May 14, 2014, 08:50:35 PM »
Head transplant...

Had one, didn't take...

...so they popped this old thing on instead.
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Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #23 on: June 15, 2014, 07:01:13 PM »
Figured I'd update this thread with the thrills I've been having...but where to start...so much lovely stuff to talk about.

After finding out about the crown I decided to go ahead and get my teeth cleaned in preparation for the brackets for the braces. Big mistake. Found two cracked fillings. So had the crown attached and the two fillings replaced all in one hours long session. Didn't help that my mouth absolutely hates to be numbed and fights, kicking and screaming all the way. Had to stop two extra times to try to numb my jaws. Went home feeling like I had misplaced the lower front of my face.

After that little adventure went to have the brackets put on. Of course, before this they had to put in separators to widen the space between my back teeth. Twelve rubber separators to be exact. For some reason my mouth also despises separators. When I went in for the bracket and band attachment I only had five separators left. Which, of course, meant that only the brackets could be attached. After that they put back in twelve separators and made an appointment for me to come back in a week.

Well, first thing that night one of the separators made a leap for freedom. Followed at various times by others. Went back in at the end of the week to have metal ones placed instead of rubber ones. The orthodontist said he had never had a patient who lost more than one rubber separator. I said welcome to my life. Three hours later a metal separator decided it didn't like being where it was and separated from between my teeth...sigh...

Luckily the rest held and come Monday there was a successful attachment of the bands around my back teeth. Right after that I scurried over to my surgeon's office for the extraction process. First they gave me "gas" which didn't do anything. Kept turning it up till it was going full blast. Still nothing. Numbing and I need to have a talk some day. Next came intravenous sedation. Doesn't knock you out. Just makes you not really care that four teeth are being yanked out of your mouth...along with all the cracking and crunching noise that comes with that. Luckily I had warned my surgeon ahead of time that I don't numb easily. So he dosed me so much that I didn't feel my mouth till the next day.

Now have to wait till July 9th to be rewired. Orthodontist wants me to be completely healed before we start that again. However...in between fun with dental surgeons and orthodontists...

I've had a few double vision episodes over the past two years. One happened again over Memorial Day weekend. So decided I needed to find out why this was occurring. Cue visit to ophthalmologist and neurologist. Ophthalmologist was fairly easy. He said it was probably an ocular migraine. The neurologist wanted an MRI of my brain to rule out problems there. I decided not to mention they might have a hard time finding it since I forgot where I left it last. So I got 45 minutes in a rock grinder without being able to move.

Went to the neurologist this past Friday. Brain was okay...which meant...it had been there the whole time. Thought I might have left it in the fresh vegetable section, among the cauliflower, at Kroger's. Since there was nothing to report per the test the neurologist has ordered an MRA of my neck and brain stem...and more blood work. Did find out one thing...I do have migraines. Just thought I had bad headaches. Turns out it runs in my family. Never knew that until I mentioned it to my mother and she filled me in. And I just thought we were crazy.

The one nice thing in my near future is I'm going out to Fire Island for two weeks of vacation. I like to act like a slug and not move while out on the beach. I spend hours watching the waves come in and the surf go out. Takes very little to entertain me. Too bad I can't really eat much with my four teeth out and brackets on. Because of the way my teeth are situated in the front of my mouth the orthodontist put little stops on my back teeth so that I can't close my mouth completely. Otherwise my top incisors would knock the brackets off my lower incisors. It's very hard to chew when your molars can't grind together.

All right...that's the update for now. Any questions don't hesitate to ask.
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Offline wolfter

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Re: You're gonna move what to where!!!
« Reply #24 on: June 16, 2014, 07:23:59 AM »
Did they check to see if your eyes dilate correctly?  I've always had to wear tinted glasses or sun glasses due to incorrectly dilation.  This predated HIV way back to my youth.  If I walk out into the bright sun without protection, I immediately am given a migraine.

Your dental issues sound horrid.

best of luck and wishing you well

greg
Being honest is not wronging others, continuing the dishonesty is.

Offline leatherman

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Re: You're gonna move what to where!!!
« Reply #25 on: June 16, 2014, 09:11:20 AM »
Next came intravenous sedation. Doesn't knock you out. Just makes you not really care that four teeth are being yanked out of your mouth...along with all the cracking and crunching noise that comes with that.
anesthesia has certainly come a long way through the yrs. And yes, the hearing the crunching, cracking, breaking of teeth being yanked outta your head is a creepy weird sound.

Any questions don't hesitate to ask.
thanks for the update! no questions; but I sure do hope that all this works out well for you and does the trick. This much work, and pain, deserves to resolve all your breathing, sleeping, eating and smiling issues.   ;D
leatherman (aka mIkIE)

So we put our hands up like the ceiling canít hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015 Reyataz/Norvir/Truvada

Offline Theyer

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Re: You're gonna move what to where!!!
« Reply #26 on: June 18, 2014, 07:39:16 PM »
Enjoy the holiday I had to speed read the Dental part as thats due me in two weeks time.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline deibster

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Re: You're gonna move what to where!!!
« Reply #27 on: July 10, 2014, 10:37:02 PM »
LTS,
Please let us know when the next round is scheduled. In the meantime, try to relax and move enough not to get sunburnt. Enjoy!
Big Hugs, Deiby
Poz since Dec 1992. Meds since 1995. Disability since 2005. Constantly fighting the Lipodystrophy 'beer gut.'

Prezista/Norvir, Epzicom, Cytomel, Prevacid, Coumadin, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, Flomax, Allegra180, Nasacort, Centrum, Flax Oil, Fish Oil

Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #28 on: August 15, 2014, 07:47:04 PM »
The gift that keeps giving...

Have to go in for more surgery on my jaw. The surgeon needs to repair part of my jaw where it surrounds one of the spaces left when he pulled four of my teeth. The front part of the jaw broke away during the last session when he was pulling teeth. That particular tooth did not want to leave. Apparently it felt quite comfortable where it was.

It has to be done so that the orthodontist can start having my lower front teeth reposition back into that space.

The beach was great. Two full weeks away from everything. Was hoping I'd be able to do another week in August but the money has run out. Bills, bills, bills...copays just for the neurologist have added up to $400 in the past two months. But guess I shouldn't complain...I do have pretty good insurance.

Any questions...just ask. I'm compulsive when it comes to sharing my medical dramas!!!
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Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #29 on: August 19, 2014, 07:12:52 PM »
Well...that wasn't so bad. Couldn't feel a thing while the surgeon did his thing with my jaw. Just had to sit there and hear the scraping of my jaw bone so that it will grow into the bone graft faster. On an antibiotic called Amoxicillin. There is nothing alive in my intestinal tract as of this morning. Will need to be on a liquid diet until done. Thank god I can drink alcohol since there's no interaction between the two. Need to get my vi'ti'mens somehow.

Tomorrow is a visit with my internist to get blood test results and probably a flu shot.  I'm sure we'll discuss all my recent "excellent adventures." Friday is back to the neurologist for another round of Botox injected into the muscles around my eyes. The first go-around hasn't done much to stop the facial "tic" I have. See what happens with this batch.

Am going back to the beach again next week. Spend five days before Labor Day weekend hibernating. Will engage in my favorite thing which is to watch the waves come in and go out. Guess I'll do it under an umbrella this time since when I come back I have to have surgery to remove some skin cancer on my back. I tells ya...if not one t'ing...ah-nuh-der...

Other than all that...everything's peachy-keen...
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Offline leatherman

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Re: You're gonna move what to where!!!
« Reply #30 on: August 20, 2014, 12:29:45 PM »
Other than all that...everything's peachy-keen...
LOL that reminded me of me. You don't know how many times I tell my peeps everything is great today, to then go on to explain how I started the day off puking into the toilet for an hour.... but was just fine after that.  ;D

so many issues, yet such a dogged spirit - good for you!

Thanks for all your updates, even when we don't all reply, we are all listening and thinking about you. Hope you got drunk! Hope you feel better! Hope you get all this stuff finished up some day. ;)  :-*
leatherman (aka mIkIE)

So we put our hands up like the ceiling canít hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015 Reyataz/Norvir/Truvada

Offline mrtoad

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Re: You're gonna move what to where!!!
« Reply #31 on: August 24, 2014, 02:21:34 AM »
That goatee is the sexy       ;D
Lee
prezista with a kick from norvir,
Truvada, Intellence. celexa,xanax.Revolving statin

Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #32 on: September 06, 2014, 03:20:50 PM »
Missing...1 inch by ĺ inch of skin. Last seen in dermatologist's office. Reward $$$ if found.

Felt like a man called horse while being sewn up. Have 12 stitches from that little affair. Can't go to the gym for two weeks. Otherwise might pop the stitches and bleed everywhere. Not that there's anything wrong with that...

So...the skin has been sent off to the lab to make sure the doc got all of the Basal Cell Carcinoma. Will know in a week. If she didn't...guess I'll have a bigger hole in my back. Does this qualify as a nip and a tuck?

Oh yes, I got my new base cabinet from Ikea. Been building it today since there's no reason to go downtown. I'm about as thrilled as I can be. Which usually isn't noticeably, except with an electron microscope. I'm repressed...what can I say.
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Offline mitch777

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Re: You're gonna move what to where!!!
« Reply #33 on: September 06, 2014, 04:32:31 PM »
Geez, I just had one removed less than two weeks ago. Don't they test the sample while you were there to make sure they got it all?
32 years hiv+ (oct. 2013) with a curtsy.

Offline leatherman

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Re: You're gonna move what to where!!!
« Reply #34 on: September 06, 2014, 06:39:09 PM »
Can't go to the gym for two weeks. Otherwise might pop the stitches and bleed everywhere. Not that there's anything wrong with that..
unless you're the guy trying to hold onto the weights after you've bled all over them. LOL :)

Missing...1 inch by ĺ inch of skin. Last seen in dermatologist's office. Reward $$$ if found.
here's hoping the doc got it all and you're good to go!
leatherman (aka mIkIE)

So we put our hands up like the ceiling canít hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015 Reyataz/Norvir/Truvada

Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #35 on: September 18, 2014, 09:02:38 PM »
Friday, September 19th, go back to the dermatologist to get the stitches removed from my back. Finally, I will be able to go to gym. Two weeks...I've deflated to nothing.

The results came back. All the edges were clear. I wonder if they take a look at the bottom of the hunk of skin. Make sure it didn't penetrate further. Guess I'll just have to take their word on it.

Got a new wire for the braces about a week ago. Another is due October 1st. I think they're speeding up the tooth-moving. First wires have been five or six weeks. This is only three. The way the orthodontist was talking this last time I might be ready for MMA surgery around April 2015. While I am all for the sooner the better...I know that I'll be in pain for some time. Not to mention I'll be on a liquid diet for about 8 weeks...and forget steak for at least six to eight months.

But...at least I'll be able to breathe without the damned CPAP machine. I think I'll also breathe better when awake. My windpipe looks awfully small on the X-rays compared to what I've seen elsewhere. Just jutting out my jaw makes breathing easier.

I want to trade my body in...too many defective parts. Feel like I was put together by General Motors.

Okay...that's it...time for my "medicine"...where's the damn vodka...
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Offline Theyer

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Re: You're gonna move what to where!!!
« Reply #36 on: September 21, 2014, 05:26:06 AM »
I admire your guts hope that all goes well in the coming months
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #37 on: April 03, 2015, 07:22:40 PM »
Thought I'd update my situation with a short notice...

Surgery is set for May 12th.

That's when they start hacking away at my face. Just thought I'd let you know.

Will post more detail later.
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Offline leatherman

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Re: You're gonna move what to where!!!
« Reply #38 on: April 03, 2015, 08:38:16 PM »
wow! where has time gone?!? Ok I did a bunch of stuff since Sept and so did you I'm betting. LOL Happy Holidays, Valentine's, the Ides of March, St Paddy's day, and April Fools Day.

Oh and how has you been lately? Although this surgery is going to a P.I.T.A., I hope you're focusing on the positive outcome in the not-to-distant future. ;D Of course, recovering/healing is going to be the worst part! Nothing is worse than being "half sick".... well, I guess being dead is worse than that! so do keep those happy thoughts going when the going gets hard in recovery. LOL

Definitely post when you can about how things go from now till then, and afterwards.
leatherman (aka mIkIE)

So we put our hands up like the ceiling canít hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015 Reyataz/Norvir/Truvada

Offline J.R.E.

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Re: You're gonna move what to where!!!
« Reply #39 on: April 03, 2015, 08:44:39 PM »



Good luck to you on your upcoming surgery.  Wishing you the best !


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 4/1/15,  t-cells are at 437,   Viral load remains <40

Current % is at 15%

  
 63 years young.

Offline bubba53

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Re: You're gonna move what to where!!!
« Reply #40 on: April 04, 2015, 08:14:26 AM »
Hi LTS,
Just a get well soon wish , hope all the pre op BS goes well , you must
Be glad this will be done soon , it's been quite the long ordeal.
I really feel for you.  maybe by the end of May you can spend some
time recouping on the beach , listening to the waves with
Some vitamin V   !

All my Best , Wade
"Who put the pepper in the....Vaseline  ? " Coffee Butler

Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #41 on: April 18, 2015, 02:34:27 PM »
Well...guess I should bring this thing up to speed.

As noted previously my MMA surgery is slated to take place May 12th...finally. Surgery is estimated to last for about eight hours, give or take. After surgery is finished I'm scheduled to spend my first 24 hours in the ICU...unless, of course, the unfortunate incident that occurred last time succeeds where it failed last time. The I'll be spending the night in the Big M on a slide out tray. So...if I don't ever post here again you'll know where I ended up.

Got in the surgical wires for my braces. These are to stabilize my teeth in place. The day before surgery I go back to the orthodontist where the two wires will each be cut into three pieces while attached to my teeth. This is done so the surgeon can move a group of teeth and keep them in correct position to each other in the new location...hopefully still inside my mouth. Unfortunately this procedure will take place...six times. My teeth once again decided they had other plans for that day and didn't cooperate in relocating. My teeth are much like the rest of my body...a collection of ornery parts, with minds and agendas of their own, that supposedly make up me.

And don't get me start on my GI Tract...oh, why not...

That's another part I've been trying to come to terms with and solve a long standing problem. Usually, though, it just contributes hot air to the conversation. So I've been working with a gastroenterologist. A very nice, older gentleman in a white coat who writes his notes with a fountain pen in very neat cursive script. That last part makes me wonder if he is, indeed, a medical doctor but since he has produced results I will hold my skepticism at bay for the moment.

The doctor was one of the few butt (pardon my French) doctors who in the early days of the epidemic would treat HIV infected patients in the area where light never shines...except when he had to do a colonoscopy. He became very familiar with the many exotic diseases of the digestive system. Some, of which, may have only been observed by doctors who didn't know better than to go to places whence they might not return. Plus the usual pedestrian amoebi and other flotsam. He learned a lot and treated everyone with dignity they didn't get elsewhere. Was able to help some too. Despite lack of knowledge of what to do on the part of the medical community.

So I've been on enemas and pills for the past few weeks. Some improvement which is good. The thing is I don't know if it's permanent or if I'll have to do this stuff every night for the rest of my life or until I get so old I won't mind wearing adult diapers...probably next year.

However...no solution to the extreme pain that develops intermittently at the anus. The pain that is like large grain sandpaper with crushed glass sprinkled on top then dosed with acid to keep it on the paper. One problem is when it's happening no one sees anything wrong. At least so far it all looks normal. I may have to wait till it's bleeding before having them inspect it again. The first problem is bad enough...this problem is just cruel.

Butt...back to the rest of my life...

Finally settled on what I'll be drinking for my liquid diet I will be on for the first six to eight weeks. It's a meal replacement called Soylent. Contains everything an average sized person requires daily. Google it. Some of you on here might find it a useful adjutant to your meals. The instructions say add water but I put mine in chocolate soy milk. If I'm going to be on a liquid diet I want to enjoy it.

After that I'll slowly add in foods like scrambled eggs, yogurts, etc. Can't do those during those first weeks because your mouth really can't move and your ability to swallow can only handle liquid. By about a year everything should be back to normal. Might have some numbness that is permanent. Also some of the teeth might be killed off...not that some of them don't deserve it...but that will add to the cost of treatment since I'll have to have them drilled and anchored. At this point I'm pretty much tapped out of extra funds.

Think I'll post a picture of myself immediate post-opp. Let everyone see my chipmunk cheeks and dazed look. Maybe even a short video during which I throw up from the effects of the anesthesia. Why keep all the fun to myself when I can share it with all of you.

Seriously though...my face will change some. I won't be unrecognizable but lower half will fill out differently, profile and face on. Will be interesting to see the final results. Then I have to decide what type of beard I'll grow to hide it all again.

All right...I think that covers most of the past several (many, many) months. Any questions...ask away.
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Offline leatherman

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Re: You're gonna move what to where!!!
« Reply #42 on: April 18, 2015, 08:42:59 PM »
It's a meal replacement called Soylent. Contains everything an average sized person requires daily. Google it. Some of you on here might find it a useful adjutant to your meals.
ummmm, I saw this movie. It's called Soylent Green . . . and, and, and, it's people!

So...if I don't ever post here again you'll know where I ended up.
I'll miss your posts <3
I can only wish you the best luck to resolve all these issues.

much like the rest of my body...a collection of ornery parts, with minds and agendas of their own, that supposedly make up me.
You know it's that positive attitude and orneriness that is going to bring you though all of this, right? You seem to have the right amount of humor and determination.

I'm a huge believer in the power of positive thinking. I told a doctor that I was going to survive yet more PCP because I had already survived it. LOL I believe that the sun will come up every tomorrow and that I'll still be living. --- of course, living the next day every day can be a pain in the ass too. LOL I don't envy you your recovery time; but I do expect to get an update from you during your recovery some time mid-May.

Maybe even a short video during which I throw up from the effects of the anesthesia. Why keep all the fun to myself when I can share it with all of you.
I think surviving for years has left us all with some un-curable problems. I still barf 4 times a month from the meds themselves. Me and the doctor have changed meds and tested for all sorts of exotica but no solutions. But it's still hugely better than back in the old aidsy days when I was puking up EVERY day.

so as I already intimately know what barfing is all about, I look forward to the vids and pix ROFLMAO :)

Good luck! :-*
leatherman (aka mIkIE)

So we put our hands up like the ceiling canít hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015 Reyataz/Norvir/Truvada

Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #43 on: April 25, 2015, 08:18:12 PM »
Only a little more then two weeks before the hack and whack takes place. Have been working to get my place cleaned up and ready for my recuperation. Two rooms down, two more to go. It's good to have surgery once in a while, gives one a reason to clean the apartment.

Got a call from the surgical team leader. Need to do another impression of my upper teeth. Apparently they missed a few. Best I can tell they're all there...

Still need to buy my sippy cup. Figure it's the best solution to solve the problem of a mouth that doesn't work. Forget straws, can't create suction. You want something that will let the liquid flow from the container down your throat with minimum effort and not make a mess. Sippy cup seems to fit the bill.

Have some shopping for a Water-Pik since I won't be able to brush. Probably a few other items that I'll never use again. Anything that will make my life easier I'm willing to spend the bucks on. That's where things stand for now.

Okay, just a short update.
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Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #44 on: May 08, 2015, 07:01:48 PM »
Like a truck without brakes on a steep hill my surgery date is fast approaching. Not sure if that's the best analogy but considering the watch-tar-drip speed at which time has seemed to pass I guess I'll take it. Tuesday, May 12th is the day!

Met with the surgeon today. Went over what he will be doing to my mouth. Turns out quite a bit more than originally planned. Because my teeth didn't move their butts like they were suppose to move the doc will have to move them himself. Not a big deal, they do it all the time. However there is that rare occasion where things don't work out and your front six teeth fall out along with that part of the jaw...after turning a lovely shade of black. But lets talk about the really bad things that can happen.

Anyway, got my will signed today. Makes things seem so...permanent. Like it will be needed.

I was surprised to find out my chin will move one inch further out. Not that I mind. I was just expecting it would only be about one-half inch at most. More chin the better, I say.

That's the short end of it. Still have one more thing to do to get ready for surgery. Have to go to the orthodontist Monday afternoon so he can rework my surgical wires to get them ready for Tuesday. The wires have to be cut and something done to the ends of each segment. Gives the surgeon something to hold onto when he gets around to playing mix-and-match with my teeth.

Okay, that's it for now. Any questions just ask.
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Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #45 on: May 11, 2015, 08:58:32 PM »
Tomorrow...Tuesday, May 12th is the day. Have to be at the hospital by 6AM. Surgery is schedule to start at 8AM. Surgeon said it would take about 8 hours...give or take. So this will be taken care of...

...however found out today the braces will be with me for another six to nine months. Arrgh...

If, or when, I get back I'll add some more about my little adventure.
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Offline bubba53

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Re: You're gonna move what to where!!!
« Reply #46 on: May 11, 2015, 09:42:46 PM »
Good luck LTS ,
Sorry I just saw this , look forward to all your war stories to come ,
You are a warrior !
Wade
"Who put the pepper in the....Vaseline  ? " Coffee Butler

Offline bubba53

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Re: You're gonna move what to where!!!
« Reply #47 on: May 11, 2015, 09:45:13 PM »
Hope you are not alone now , are you ?
You have a big day ahead.
PM if you need to talk
"Who put the pepper in the....Vaseline  ? " Coffee Butler

Offline leatherman

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Re: You're gonna move what to where!!!
« Reply #48 on: May 11, 2015, 10:29:22 PM »
Best wishes!!!!  :-* :-*
leatherman (aka mIkIE)

So we put our hands up like the ceiling canít hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015 Reyataz/Norvir/Truvada

Offline LongTimeSurvivor

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Re: You're gonna move what to where!!!
« Reply #49 on: May 19, 2015, 08:37:09 PM »
Figure it's been a week since I had my operation. So thought it was about time to drop in and write something to give y'all nightmares for at least the foreseeable future.

Surgery took 10 hours. Apparently I have extra thick jaw bones. So they ran through a few saw blades. There were 12 cuts on my jaws. 6 on the upper jaw and 6 on the lower jaw. Cuts 2-3 and 4-5 were used to create two short sections on the upper and lower jaws. These sections were tossed and the remaining sections were screwed together to create my new jaw lines. The teeth being pulled back into my mouth on both jaws.

After that my upper jaw was cut loose from my skull on a line just below my eye sockets. This line made a jog about half way back to where the cut dropped down behind my last molars on the upper jaw. The jaw was then moved forward and a sterilized bone piece was inserted where the jog created a box as the jaw was moved forward. This was to help keep my upper jaw from sliding back into it's old position.

Then there were two cuts to my lower jaw, one each side, behind the last molar on the lower jaw. This was so the surgeon could now slide my lower jaw forward to match the upper jaws new location. Plates and screws were used to hold those cuts in place. My jaws, when now x-rayed, look like a jigsaw puzzle.

After all of that some acrylic hardware was place behind my two new tooth lines to help provide stability until the jaws could make new bone to hold things in place. The acrylic hardware will start to be removed in about three weeks. At which point eating and drinking might actually be less of a let's-try-to-find-a-hole-through-this-maze-so-I-can-feed-myself. Considering I'm only on liquids, which should be able to flow around any obstruction, you begin to see the measure of difficulty that acrylic hardware introduces into feeding oneself after this type of surgery.

Along with the MMA surgery, a portion of my sinuses had to be reworked. That, quite literally, requires the surgeon to take a hammer and chisel and hack out the offending bone. It's just too tight of a fit to maneuver a miniature saw into that area. Then it has to be re-affixed in it's new position. That requires more plates and screws then you want to know about.

That pretty much sums of the surgery part. Makes you appreciate why a surgeon might charge $60,000 for the work (oh, did I mention this is all done through small holes cut on the inside of your mouth...really small holes).

So once sealed up, I was placed in the ICU for 24 hours under sedation. My surgeon did not want a repeat of the last end of surgery adventure I endured, or rather, miraculously survived. The stress on him watching me likely to die was something he didn't want to experience again. Much less have me experience it...again. Even if at the time I wasn't awake to really know what was transpiring.

Once I've recovered from writing this I will then tell the tale of waking up to new horrors. You have been warned.
« Last Edit: May 19, 2015, 08:44:29 PM by LongTimeSurvivor »
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