Re: Re: submandibular gland - Lu

[Guest guest]

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?

[Guest guest]

Your welcome ,

I'm praying yours isn't that but if it is they will get right on it and you won't go thru the many months of mystery and pain that I did. There is so many aspects of RP that are never discussed, I don't think even the doctors know some of it. That is why I feel the foundation is a great thing if we can educate the public and doctors, we may save someone's life.

Please keep me informed on how you are doing. My prayers are with you! Take care,

Love,

Lu

.. 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.