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Hey Tova,

Well you sound like you're doing pretty well these days- at least

overall!! :) Congrats on the fastest recovery! I don't know if you

have considered this, but I read your complaint about your

complexion. I would see a dermatologist. I know personally how much

having an uncooperative complexion can make you miserable. Don't let

them throw you on antibiotics instantly, but there are miracle

topical creams that might do the trick that are easy enough to add

into your daily routine while you get your skin cleared up. Sometimes

if it gets on the wrong track, it has a hard time getting back on the

right track. I don't know what is going on with your skin, but I

understand how unhappily you probably feel about it. I

had " interesting " complexion problems arise out of NOWHERE before the

surgery (way before and totally unrelated). Anyway, after two

different dermatologist and a lot of miserable time and embarrassment

in between, my skin is cleared up 99% It was really bad at certain

points too and I hated it. (My pre-braces photos are even that much

more charming because they also show my skin pre- 2nd wonderful

dermatologist!! Yikes- ugly teeth, ugly smile, and ugly skin!!) That

is the one thing I was fortunate with about this surgery... to

already have in place some meds I use for my skin when I had the

surgery, so they kept everything under control afterwards and I have

not yet broken out (Im almost 3 weeks post-op so maybe that is yet to

come- but I hope not! The rash all over my body was bad enough!)

Anyway, I hate to hear about anyone that is just putting up with

something that maybe can be helped. Of course, forget what I am

saying if your skin IS improving on its own but is just taking its

sweet-ass time! Good luck!!!

Probably your jaw sliding back, in my humble guessing, due to your

muscles still adjusting and figuring out your jaw's new position in

relation to the upper jaw. That I would imagine would cause it to

move back and forth... esp. since the bones are healing right up now

so it couldn't be them. You haven't used those muscles at all while

you were wired shut, so I would think it would take them some time to

get it figured out. It would aggravate me too though! Probably will

just take time. What did your ortho say about it?? I am still in my

splint and the surgeon told me I could occaisionally take of the

bands, but I only did once to change them (they had almost snapped

anyway) on my birthday. I prefer them on myself. Let us know when

your ortho tells you how much time until you'll probably, hopefully

get the braces off!!! I hope soon!! Good luck and keep hanging in

there... the end isn't far now! :)

I have one question... how is your mouth opening at this point?? Is

it pretty good? Improving as you continue to eat more normally now?

Can't wait to see your next round of pictures! What does your

boyfriend say these days about your dental inspections? If he's like

my boyfriend, he's probably been scrutinizing the midlines a LOT!

Cheers! Katja :)

>

> Hey there... Well, at 8 weeks post-op I am all but back to normal.

my computer

> broke so I have been without it for the last week but tthat's good

cuz I was spending

> way too much time on these addictive message boards! I went to the

orthodontist on

> Tuesday and he told me in all his years doing this he's never seen

someone recover

> so quickly. (I had lower jaw advancment 5.5 mm on january 24th) I

think I am still a

> tiny bit swollen in the lower cheeks and jawline but even I can't

tell... I only feel it on

> the inside of my mouth. My skin has STILL not cleared up from my

post-surgery

> break-out to what it was before surgery and that is pissing me

off. I've been unwired

> for about 3 weeks and eating pretty much whatever I want except for

really hard or

> crunchy stuff. He removed the hooks from my top teeth but I am

still wearing one

> rubber band on each side that I am supposed to remove for eatting

and cleaning for

> about 3.5 hrs total per day. I wear them all the time though. I

feel a bit like when I

> take them off my jaw slides back a bit. Not too happy about that.

My midline still

> does not match up but he says they will fix this with the braces. I

asked him how

> long I will still have to wear them and he refused to give me an

estimate until my

> next appt. in 2 weeks. I'm gonna flip out if it's a lot more than 6

months. I am soooo

> over this.

>

> This is I think the posting I was waiting for... to thank you guys

for all of the outlet,

> support, advice... this experience would have sucked at least three

times as much

> without the boards and emails to keep me company. I will have my

boyfriend take

> some photos and post them with the " almost " final results.

> More later!

> Tova

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Hi Tova,

I hope you are eating well! I have planned my " first " meal which

will be in 5 days. My husband makes this lump crabmeat au gratin

that just melts in your mouth. It is four cheeses heavy whipping

cream lump crab meat and butter. I plan on eating it on baked

Talapia and potatoes for at least a week. I'll be in my size 6 again

by the end of the week!! I am so looking forward to grits and eggs

all mixed together in the morning! I am trying to think of foods

that preety much dissolve without chewing. Oh, Ya I got side tracked

at the thought of food, sorry its a habit lately. Maybe the break

outs are a combination of your crazy diet the past months along with

the meds? Just a guess. I was on acutane in high school to get rid

of a terrible complexion so luckily it hasn't come back (too bad) I

am breaking out right under my nose. I thought it was from blowing

it too much. Well talk to you later. I hope everything settles back

to normal soon.

Jane

> >

> > Hey there... Well, at 8 weeks post-op I am all but back to

normal.

> my computer

> > broke so I have been without it for the last week but tthat's

good

> cuz I was spending

> > way too much time on these addictive message boards! I went to

the

> orthodontist on

> > Tuesday and he told me in all his years doing this he's never

seen

> someone recover

> > so quickly. (I had lower jaw advancment 5.5 mm on january 24th) I

> think I am still a

> > tiny bit swollen in the lower cheeks and jawline but even I can't

> tell... I only feel it on

> > the inside of my mouth. My skin has STILL not cleared up from my

> post-surgery

> > break-out to what it was before surgery and that is pissing me

> off. I've been unwired

> > for about 3 weeks and eating pretty much whatever I want except

for

> really hard or

> > crunchy stuff. He removed the hooks from my top teeth but I am

> still wearing one

> > rubber band on each side that I am supposed to remove for eatting

> and cleaning for

> > about 3.5 hrs total per day. I wear them all the time though. I

> feel a bit like when I

> > take them off my jaw slides back a bit. Not too happy about

that.

> My midline still

> > does not match up but he says they will fix this with the braces.

I

> asked him how

> > long I will still have to wear them and he refused to give me an

> estimate until my

> > next appt. in 2 weeks. I'm gonna flip out if it's a lot more than

6

> months. I am soooo

> > over this.

> >

> > This is I think the posting I was waiting for... to thank you

guys

> for all of the outlet,

> > support, advice... this experience would have sucked at least

three

> times as much

> > without the boards and emails to keep me company. I will have my

> boyfriend take

> > some photos and post them with the " almost " final results.

> > More later!

> > Tova

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  • 3 years later...

Debbie,

Thanks for checking in. It is getting hard even with so many of you guys being out too. I know we all have these challenges we're facing, and to not understand what is going on is so very hard. It is a relief to be able to at least put a name to an ongoing problem, and if it leads to treatment-- that is even better.

Take care of you,

Hugs,

Tracie

To: Neurosarcoidosis Sent: Sunday, December 7, 2008 5:47:32 AMSubject: RE: Just checking in...

I haven't posted in awhile, but have been lurking....

I have been having a lot of dr appts and tests lately. It's been wearing me out, but it's worth it. Dartmouth Hitchcock in NH (a new hospital for me) is about 2 hrs. away. The drs so far have been good and thorough, which I like. The possible diagnosis is schleroderma just affecting the gastrointestinal system. I hope that finding out what is wrong will result in being able to treat it. I have had bad stomach issues for about 2 yrs now. I am already on 3 types of meds for nausea and vomiting, but they don't help much.

So that's what has been going on with me...

Debbie T

Co-moderator

PS We are getting our first snowfall this morning...Just a dusting so far , but pretty.

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