Re: submandibular gland - Lu

[Guest guest]

Hi Lu,

Thanks for trying to call. We screen all of our phone calls, so if

you announce yourself and say you're from the rp group, I will pick

up if I'm there, I promise! Don't feel like you need to call me,

though, if you want to share anything on the message board that

works. I work during the day, so I'm not at home then, but I do

check the messages here. What did you mean that it almost took your

life? Was it an undiagnosed infection? Mine was really sensitive in

the beginning, like the rest of my body, but now is just swollen and

slightly tender at times. I haven't been using any hot compresses,

because heat seems so opposite of what my body needs in a flare.

But, I'm really willing to be wrong~ ! Thanks!

> In a message dated 01/01/2002 9:23:44 PM Central Standard Time,

> mmjw3@a... writes:

>

>

> > I have a sensitive and swollen area, right below my chin. Is

this

> > the area that you are speaking of? I am scheduled for a CT scan

of

> > the area in mid January, but the Rheumatologist I saw has no idea

> > what it might be. Is this similar?

> >

> >

>

> yes, very similar. I tried to call you and got an answering machine

but I

> didn't leave a message.

> Lu

[Guest guest]

Hi Lu,

I responded to your last posting before reading this one. This was

very helpful and I will ask about it. If it is that, thank you for

saving me having to go through as much as you did!

Hope you are starting to feel a little better.

> I can call anywhere after 8pm free on my cell phone. My case

started the same

> as you are describing, actually my dentist noticed the swelling and

sent me

> to another doc.

>

> After 5 months of that doc sending me to other docs. to rule

everything else

> out, no one could figure out what was going on, my gland just kept

getting

> larger and larger and the pain was horrible.

>

> But it didn't start out that way only swelling, and slight

irritation.

> They did MRI's and cat scans which showed it was swollen but they

didn't know

> why. Later I read a medical article about RP and your submandibular

gland.

> Actually it was all the glands right under your chin, there are

several.

>

> Finally they sent me to Vanderbilt, that day I would have died if I

had not

> been taken there. They immediately took over. It had progressed so

bad that

> my tongue swelled and my airway was obstructed. They had the trach

kit beside

> the bed and 5 different IV's going in me. I couldn't swallow, they

had a

> suction machine hooked up beside the bed to catch my saliva. It was

bad.

>

> At one point I started throwing up, and I knew I was in trouble, my

husband

> said 5 doctors came rushing in at once and they were rushed out.

>

> It took only a few hours for them to notice I was improving, the

drugs they

> were giving me were working.

>

> After a week of all the antibiotics and high doses of pred. things

settled

> down for me to come home to go to the hospital here and continue IV

> anti-biotics, then I had home health come to the house and do it.

>

> After everything got better they had me return and removed the

gland. I

> cannot find the article I read I have looked for it numerous times.

But I

> think its something we should know about, and that it does happen

to RP

> patients. Maybe not all of them, but some of them. Even my rheumy

at that

> time missed this.

>

> The doctor at Vanderbilt was wonderful and he saved my life, you

can't even

> tell where he did the surgery. he was excellent.

>

> Now I hope I haven't scared you and said too much,I just wanted to

inform you

> and help you if I could. I just think an informed patient makes a

better

> patient.

>

> If I can help in any way, just let me know.

> Please take care and let me know how you are.

> Lu

> > Hi Lu,

> > Thanks for trying to call. We screen all of our phone calls, so

if

> > you announce yourself and say you're from the rp group, I will

pick

> > up if I'm there, I promise! Don't feel like you need to call me,

> > though, if you want to share anything on the message board that

> > works. I work during the day, so I'm not at home then, but I do

> > check the messages here. What did you mean that it almost took

your

> > life?