Wednesday, January 30, 2008


Drove for two hours to go see the Stomatologist at University of San Francisco Medical Center. Dr. Greenspan was not available, so I got to see Dr. Pieri. She is awesome!

My ENT doctor had been pretty shocked when I went into see him last week. We weren't supposed to have an appointment until next year, but the pain was getting to me, and the whole right side of my face was swollen right down the jaw, into the neck and down below the ear. I had been putting hot packs, cold packs and Lidoderm patches on it. But, the night before I took a piece of Dilaudid to help me sleep with the pain. By the time he got to see me it was several days later and the swelling had gone down, the pain had lessened, but the sores in my mouth were enough to shock him. There's a nice neutral friendly face, and then there is the concerned face, and then there is the "OMG, this is bad!" face. Needless to say, he wanted me to get a biopsy right away. I reminded him that I already had a biopsy some years ago verifying Oral Lichen Planus. He told me that yes, I have OLP, but this now looks like I have Pemphigus. I wrote it down and decided to look it up later. In discussing the biopsy I asked if we couldn't just take a scraping. After all that last biopsy I had dug a whole into my tongue, had stitches for a while, swelled up, made it impossible to talke or eat and was more painful than what I already had been experience. He wouldn't budge, and insisted that to get a proper diagnosis, a deep chunk of meat of the tongue would have to be removed. He could see my hesitation was more than fear. So, he had me go over my history again. Too bad he doesn't read the typed up history I gave him. But, that's okay. It's probably stuck somewhere in my file. Who wants to go digging around in there when the patient is right in front of him. When I got to the part about having seen the Stomatologist at UCSF in the past, he jumped on it, and told me to go back there asap. He even faxed my records up there, had his employee call and tell them I needed to see someone immediately. Dr. Barker, you are a gem to see my situation clearly, and to make the moves to help me to get what I need for my well-being.

I have been suffering from Erosive Oral Lichen Planus for years. This photo was taken in December 2006. When I was first diagnosed in 2003, I was told it would be less troublesome after the first worst stages of it died down. Wrong!

Now, back to the visit with Dr. Pieri. I first was seen by two medical students. I know it is a teaching hospital. I have been in more than my share of them. Sometimes a student is required to come in and do whatever kind of assessment they are able to do, then they report their findings to the doctor, who may or may not have something to teach them about what they think they learned. The doctor then comes in and does things from their viewpoint. So I didn't mind having the medical students do their thing with me. If they can learn something from my situation that will help some poor patient in the future suffering the same diagnosis as me, then by all means let me help them to learn. A history was taken verbally, although I filled out all that stuff while sitting in the office, it is still part of the medical students duty to do it verbally and to make their notes and observations. The hard part for the young ladies who were doing this, was to look at the problem visually. With gloves on, the first one gingerly approached my mouth. At which point I told her to not worry about hurting me. It already hurts, and if she needs to look and see, then go for it. She took my word for it and, surprisingly, she was a tough cookie. She definitely got a complete look at the insides of my cheeks, the top of my tongue all the way back , the underside of my tongue, the roof of my mouth, my gums and lips. After she was done, her accomplice joined her. Thank heavens she hadn't learned the grab and pull technique, so I had a bit of a break. I am not a person who enjoys pain, but I have learned to tolerate a higher pain level than most people, otherwise, I would have a much harder time getting through life than I am.

So, the two of them stood behind me and came around with their hands to caress my throat from neck to jaw and discovered swellings I didn't even knew I had. Funny, this examination was very gently done. After they left I took a breather, wrote down some notes to myself to remember to ask the doctor.

When Dr. Pieri came in, I was surprised to see her very long shiny braid was no longer there. Instead shiny, curly hair framed her face. I had admired so much her long hair several years ago when we first met, so I missed it. (Of course, momentarily)

We soon got down to business and I told her that Dr. Barker suggested a new biopsy as he felt I have Pemphigus. Though he had looked at it a week after I was at my worst. I have had more improvement in the meantime, before seeing her. She took one look at my mouth and said she could understand why he thinks I have Pemphigus. Then, I went on to ask her if she also thought I needed a biopsy to determine if I now have Pemphigus mixed in. She shook her head. "Your mouth is in bad enough shape, and I am sure it is in major pain. I don't want to add to your troubles right now. Let's get this under control and then make a decision."

She let me know that she was quite sure that I still have Oral Lichen Planus of the Erosive type. Plus, it is obvious that I have a fungal infection going on, too.

I was relieved! I had figured it they were going to do a biopsy in the office, I would have to stay overnight at Xavier and Trish's house. The last time I had a tongue biopsy, even though it was numbed, just the numbing process, itself, hurt. Okay, big deal... uncomfortable, I'll say. Enough meat was cut out of my tongue that stitches were put in. Once I got home the numbing medicine began to wear off, and then the pain increased, my tongue swelled, and the stitches irritated my mouth until the day he took them out. More pain, more swelling. And all that time, I still had a nasty case Lichen Planus to deal with.

So it was nice that I could just drive the two hours home and sleep in my own bed without any more pain than I already have. Just the idea that I will start on new meds and begin to get some control gives me a great deal of hope.

What bothers me about all this is that the standard medical descriptions of Lichen Planus suggest that it is not too bad, just lacy striations on the skin. Seldom are there further descriptions into the erosive sort of Oral Lichen Planus. I often wonder how other people handle the situation. Oftentimes, the lacy kind is hardly ever noticed, or needing much in the way of treatment from what I understand. I was diagnosed with the lacy kind in 1995. The little tube of cream I was given to apply to it lasted me over a year. I didn't really see any point in using it as they were just white lacy markings on the inside of my cheek and didn't cause any problems.

When I started to get the sores in my my mouth I went back to that doctor who didn't really look inside my mouth and told me she didn't see any sores. It was my family doctor who bothered to look, noticed the bullous sore on the lower inner lip, and freaked out. She called the dermatologist who previously didn't see anything and told her what she saw and sent me back to her. By the time I got in to see the derm, the big sore had resolved but my tongue had striations and redness and pain. So she ordered that same tube of cream to put in my mouth.

This picture is also from December 2006. You can click on any of the pictures and see them larger.

I'll leave off here as I am tired and need to go to bed.

Erosive Oral Lichen Planus

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