Tuesday, April 28, 2009

Creaky jaw

UGH. I am so annoyed. My jaw has been so creaky lately...more and more so as time goes by. It is very disconcerting. I mentioned it last time I was at the doctor and they all said the same thing (teeth feel fine and anchored, etc) so then why is it getting worse? Its only on the right side, too. I have one less implant on that aside, because I lost one that was over on that side and that is why I am so nervous about it all. Its just hard to describe the way it sounds and feels when they ask me what I mean by creaking at the doctors...when I press on the underside of my jaw I can actually feel movement of the entire thing...I dont know if its the plate moving too or if its just the teeth, I think its just the teeth but I dont know! I wonder if this is just how it will be for the rest of my life. Its so stressful because I am having a hard time eating (creaking reminds me of things breaking, so I cant really eat what I want to without worrying) and sleeping, as when I lay on one side the whole thing creaks a lot. *Sigh. I hope this is just a temporary thing, maybe it is the temporary bridge of teeth since it is made out of plastic and it will stop when the "real" bridge goes on *crosses fingers.*

Other than that things are just dandy.

Monday, April 20, 2009

All looks fine

So I had a good appointment today. The area looks healthy, and I havent had any more bleeding. Dr. Wong was loath to remove the teeth, because they really arent meant to be removed until the permanent ones are ready and he said you can risk doing damage if you do do it, so I didnt have to go through that (thank goodness, you'd think I'd be less of a wuss about stuff like that after everything I've been through but it still makes me cringe thinking of anything being done in there).

Remember that lump I had inside my mouth where my denture lay that they said was filled with fluid when they went in? They cleaned it out, but the dr said perhaps it had filled with old blood and slouthed off and that is what all that blood was from. It was underneath the denture on the side where there isnt a gap, so I wouldnt have been able to get under there and see it anyway, so maybe that is what happened instead of the blood coming from that one area we thought it had come from. Who knows I guess? Just more of "keep it clean" and "make sure you dont eat very hard things" etc and go home and wait.

So they said that if I experience any more bleeding to come in but other than that I go back in again next month. I am so glad because I was so stressed and worried about today and it turns out that (hopefully) what happened was a fluke.

Thanks for the good thoughts!

Wednesday, April 15, 2009

Bad scare today

I woke up and went to the bathroom and spat a large mouthful of dark blood into the sink. It kept coming out and I was so afraid. It was right in that area in front where the plate is exposed a little bit. I ran and dropped my kids off at my parents and drove like a madwoman to the hospital, crying the whole way because I was just so sure I had an infection.

The news is, well, that we just arent sure what happened. There are a few things they are saying. One is that maybe a piece of food got stuck down in there and irritated the area and it got a blood clot and just dislodged itself, causing all the bleeding. Another is that I could have upset an implant, which is less likely but the whole thing has been creaky lately when I chew and its possible from chewing on it so much I have done something bad to one of the implants (which I am so afraid of, but we wont know til Monday). Another could be infection....but really I am not exhibiting any signs (fever, swelling, redness, inflamed tissue etc). They said the area looks pink and healthy, except for one small area that is irritated appearing but other than that it "looked" good from the ouside. Although the last time I had a major infection I wasnt showing any of those signs either so I am still feeling very very unsettled.

So they cauterized the area with silver nitrate to make it stop bleeding and on Monday I am going to see Dr Wong who is going to have to remove the whole thing of teeth and check everything over (sorry Dr Wong if you're reading this, you know I love you). He didnt want to remove it until they had the final set of teeth ready but its looking like they will have to. The dr also said that it is harder to see if I have a pocket of infection or something going on in there with all the hardware in my mouth because it causes scatter in the x-rays so it kinda has to be out for them to get a really solid look in there. I am so worried and anxious. In my heart I am so afraid of infection again...all the way there I was almost sure they were going to say I had one and the plate had to come out. I am so done with major surgeries, and I just wish my body would act normally so I can be normal now the way I want to and be done with this mess.

I know I wont sleep until after my Monday appointment is over. :(

Friday, April 10, 2009

Scoop and curettage

Why why WHY are doctors even still doing this procedure in terms of removing ameloblastomas? Isnt a doctor's hippocratic oath to "first do no harm"? This is the easy way out...its not a matter of IF your tumor will return, but when. And, the second time around, will it still be the non-malignant variety or will you be being told you have cancer and that you are going to die, not just have to have part of your jaw and teeth removed? Why chance it?

I just dont understand this at all. I get so angry, because when I had my first ameloblastoma back in high school (it was 1998 and I was a junior) the oral surgeon then didnt say anything about what this was but just scooped it out and sent me home, with no "by the way, this WILL return so be prepared" he just said to "keep an eye on it." I was young and naive, my parents had no idea what this thing was and we all just thought I had dodged a bullet...now that I know so much more I feel angry that I wasnt informed enough about this thing to really make sure I got routine CT scans and health care before it returned with so much vengeance that I lost as much of my lower jaw and teeth as I did. My life wont ever be the same again. To do this to people who have no idea what they are up against is poor medicine, in my opinion.

I have been feeling a little bitter lately...I both loathe and love the ameloblastoma group on yahoo (sorry guys) because every time I open my email I relive what I have been going through the past almost 4 years now. The old fears return every time I read someone's message about finding out they have an amelo.

I am sorry this is not an upbeat post at all after it has been so long, too. Just under a lot of stress from the move and all and the gloomy rain and clouds. Hopefully it passes soon and my next update will be more cheerful. I see the doctors again on April 20th, will update then.