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,

My MRI states " chronic sinusitis " . I always have dry vocal chords,

hoarseness and my sinuses feel weird. But of course they just put it

off on something else. Do you have any issues with the parotid gland?

Mine swells and at times (left side) has gotten quite large.

Oh well, just thinkin out loud.

Terri

>

> This is M

>

> I have thickening of my sinus's too. My nose and mouth are so dried

out they hurt. I must put saline down my nose to get my voice box wet so

that you can her me when I talk.

>

> I must uses artificial salvia and also artificial tears and special

eye drops. My eyes get so dried out that I can actually feel the cells

dehydrate when I put in cyclosporine in them.

> I am going in and have special contact lenses that fit over my whites

of my eyes to keep them mosist. It is something new that Mayo has.

> I'm just recovering from my third open heart surgery they replaced a

pig valve that had gone bad a second time, but now this new one is

starting to have the same problem all the others had ,they think

microscopic blood clots are forming on the back side of it and it sticks

open to far.

> they upped my comedian to give the valve time to heal. Then my next

check up is with my cardiologist and the surgeon, so now I'm scared. Im

doing well now but get times that last about 30 sec I cant get air at

all.

>

> Its been awhile now and I am doing well, but walking on the tred mill

I get pain in my neck pressure pain.

> M

>

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Terri, have they considered Sjogren's syndrome? Dry eyes, dry mouth & swollen Parotid's are 3 prominent symptoms.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: SDate: Wed, 14 Mar 2007 02:33:13 -0000

,My MRI states "chronic sinusitis". I always have dry vocal chords,hoarseness and my sinuses feel weird. But of course they just put itoff on something else. Do you have any issues with the parotid gland? Mine swells and at times (left side) has gotten quite large.Oh well, just thinkin out loud.Terri>> This is M>> I have thickening of my sinus's too. My nose and mouth are so driedout they hurt. I must put saline down my nose to get my voice box wet sothat you can her me when I talk.>> I must uses artificial salvia and also artificial tears and specialeye drops. My eyes get so dried out that I can actually feel the cellsdehydrate when I put in cyclosporine in them.> I am going in and have special contact lenses that fit over my whitesof my eyes to keep them mosist. It is something new that Mayo has.> I'm just recovering from my third open heart surgery they replaced apig valve that had gone bad a second time, but now this new one isstarting to have the same problem all the others had ,they thinkmicroscopic blood clots are forming on the back side of it and it sticksopen to far.> they upped my comedian to give the valve time to heal. Then my nextcheck up is with my cardiologist and the surgeon, so now I'm scared. Imdoing well now but get times that last about 30 sec I cant get air atall.>> Its been awhile now and I am doing well, but walking on the tred millI get pain in my neck pressure pain.> M>

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they upped my comedian to give the valve time to heal. Then my next check up is with my cardiologist and the surgeon, so now I'm scared. Im doing well now but get times that last about 30 sec I cant get air at all.

Many comedians should be upped. Of that I am sure!

, I know you mean coumadin-- the blood thinner. I'm wondering if the lack of air is that you are holding your breath-- instead of doing the inhale thru your nose, exhale FULLY thru persed lips.

I'll explain more of this is another email-- as I have to go on to my son's computer so they cna do their workout in my computer room---

Hugs,

Tracie************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

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Rose,

Yep checked for Sjogren's - everything was negative. As a side note, I

have a daughter-in-law that was just diagosed with Lyme's disease. This

child hates it outdoors but put together a large golf/picnic in the fall

for the bank she works for - Bingo.

She has a great prognosis and it was caught in early stages although she

has some arthritis in the wrist and knee. Gotta get her well so she can

start on some babies. I need some grandbabies!

Terri G.

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M, This is S. Good news on the contact lenses for your eyes. Hope they help alot. I am so sorry to hear you are having trouble with the newest work done on your heart. Is the sarc possibly causing some rejection problems?... Going without air is the most frightening thing to go through.. I had vocal cord dysfunction (caused by sarc) when this last bad flare(7plus years ago) happened. I would start coughing and then wheeze in and not be able to catch my breath for a long time. While I was coughing I'd also lose everything in my bladder, too, so wore 'help' for about eight months til it eased up with treatment. To this day I go NOWHERE without a bottle of water so my throat doesn't get dry and I start coughing. I am glad to hear you are up and walking. I hope you get good news with your cardio appointment. I also hope

and pray the meds help your heart to heal up and accept the new valve. You surely deserve some good news and some good results for once. My prayers and good thoughts go with you. Take it easy. hugs S. Mommer wrote: This is M I have thickening of my sinus's too. My nose and mouth are so dried out they hurt. I must

put saline down my nose to get my voice box wet so that you can her me when I talk. I must uses artificial salvia and also artificial tears and special eye drops. My eyes get so dried out that I can actually feel the cells dehydrate when I put in cyclosporine in them. I am going in and have special contact lenses that fit over my whites of my eyes to keep them mosist. It is something new that Mayo has. I'm just recovering from my third open heart surgery they replaced a pig valve that had gone bad a second time, but now this new one is starting to have the same problem all the others had ,they think microscopic blood clots are forming on the back side of it and it sticks open to far. they upped my comedian to give the valve time to heal. Then my next check up is with my cardiologist and the surgeon, so now I'm scared. Im doing well now but get times that last about 30 sec I cant get

air at all. Its been awhile now and I am doing well, but walking on the tred mill I get pain in my neck pressure pain. M

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,

I’m

sorry you’re having problems again; I will keep you in my prayers, and

hope the medication works, so you won’t need another surgery! Hang tough

girl, I’m pulling for you. J

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Mommer

Sent: Tuesday, March 13, 2007

12:36 PM

To: neuro sarc group

Subject: S

This is M

I have thickening of my sinus's too. My nose and mouth are so

dried out they hurt. I must put saline down my nose to get my voice box

wet so that you can her me when I talk.

I must uses artificial salvia and also artificial tears and special eye

drops. My eyes get so dried out that I can actually feel the cells

dehydrate when I put in cyclosporine in them.

I am going in and have special contact lenses that fit over my whites

of my eyes to keep them mosist. It is something new that Mayo has.

I'm just recovering from my third open heart surgery they replaced a

pig valve that had gone bad a second time, but now this new one is starting to

have the same problem all the others had ,they think microscopic blood clots

are forming on the back side of it and it sticks open to far.

they upped my comedian to give the valve time to heal. Then my

next check up is with my cardiologist and the surgeon, so now I'm scared.

Im doing well now but get times that last about 30 sec I cant get air at all.

Its been awhile now and I am doing well, but walking on the tred mill I

get pain in my neck pressure pain.

M

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