Friday, September 10, 2010

Elizabeth - Follow up Visit to Doctor

Tuesday I went to San Francisco to see Dr. Piri. She checked on my mouth and as I knew, it looks really good with some mild redness in the front sides of my tongue, and a little bit of striation underneath tongue. These areas cause me little or no pain or burning. I just have to be careful if food I eat in a restaurant doesn't have hidden spiciness. So anything that comes with a sauce or gravy, I always ask to have on the side so I can carefully "test" them.

right lateral in back by molar

The only problem area is the same worst place I've had all these years located behind the right bottom back molar. I have only seventeen teeth and am missing all my molars on that bottom side. The only one remaining is my wisdom tooth, which was never pulled. Unfortunately, because it is so far back there it is hard to clean, and difficult to get the Clobetasol into for healing to take place. At one point when things were so swollen and the scar tissue appeared to be over growing my tooth, we talked about having it extracted. At the time, I was in so much pain, and couldn't open my mouth wide enough to toleration having it done, that I never got around to making an appointment. I am glad I didn't have it done. The swollen scar tissue has receded and I am able to use a bent Q-tip to lift some of the yucky stuff that lurks there and at one time caused infection.

 tongue a little swollen with raw patch on left

Part of the problem also, is that the tongue back there is also still sensitive and I think a little swollen as I have a hard time swallowing on that side. Though not erosive at this time, it is still painful but not burning. I've had worse, but I wish it were better. I constantly have the feeling of a sore throat back there and I can feel it from the outside on my neck, under my chine and ear. Sometimes I put a Lidocaine patch there to numb it for relief.

 right lateral showing small blister and vein

My salivary glands are still swollen and rock hard. I don't know if they will ever go down. That area hurts to touch.

I will now be referred to one of the dental clinics through UCSF in order to have some much needed dental work done. Since I have no insurance this will be a slow process where I will probably only be able to get one tooth worked on at a time unless they have some kind of payment program where they bill me and I pay as I can. But, at least I will have some expert care, and can begin to feel more normal. I'd like to save my front teeth as soon as possible, then get a bridge for the upper left side. I think my bite would improve considerably.

top of tongue striations

I asked how would I ever know if there were changes indicating cancer. What would I need to look for. She said you really cant tell in the early stages and that is why she wants me to keep coming back regularly for check ups. I asked what kind of treatment.

Surgery? Yes
Chemo? Yes
Radiation? Yes

Apparently the radiation is the harshest. If I think I have problems with my mouth now, I hope I never need to have radiation as it ruins everything. I don't even want to think about it. But, I am glad I asked. I like to know the facts, even if they might not ever apply to me. Better safe than sorry. I had actually been thinking of finding someone here where I live to go to in case I ever have a bad flare up again. I was thinking I could avoid the long trips to SF. But now I realize it's best I keep going up there. Dr. Piri knows my mouth, and would recognize subtle changes. My own Ear Nose Throat doctor who I see for allergies, often asks to see my Oral Lichen Planus and he always says, "All gone! That's good!" And I know he doesn't really know what to look for unless it's raw, open erosive and completely fulminant. Same with my asthma doctor. Though both are concerned about it, I have had to show them pictures of how bad it got, and explain what's still bothering me.

 under the tongue striations

One wonderful thing that has happened by my keeping these two informed of progress and treatment is that I have learned since I am no longer taking prednisone I can return to having my allergy shots! Apparently Cellcept works on a different part of the immune system than prednisone does.


Note: I took the pictures myself by holding a hand mirror in front of me and looking into the camera. I am thrilled that I have so much more muscle control now. In the past when Dr. Piri was taking pictures my tongue would vibrate because I didn't have muscle control. Plus, I can now open my mouth wider.


Diana said...

Can you please update about this issue? I had the same and my tongue is similar.
Thank you

Elizabeth Munroz said...

In 2011 I was diagnosed with Chronic Myeloid Leukemia. It is NOT related to OLP in any way. It's just a coincidence. However, once I began taking the chemo pills called Dasatinib my OLP went away in a month. I had not had any recurrence of the OLP all this time. It is now 2018 and I now have the OLP again. I have to start all over again!

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