Renewing Strength- My Journey with Ameloblastoma

I have an update, got my teeth in

tmo967@aol.com (Tina) — Thu, 03 Dec 2009 03:42:00 +0000

But I'm too tired to post it right now. I swear I will do it by Friday...and I have pictures! Stay tuned. :)

Yesterday's appointment

tmo967@aol.com (Tina) — Wed, 28 Oct 2009 02:36:00 +0000

Another stressful one, but also one step closer to the finish line.

So this appointment they needed to once again remove my teeth and fit the metal base on to each implant. Then they took a panoramic to be sure that each implant was fitting *just* so. They were. So they then had to take this stuff and take an impression again of the base in my mouth for the new teeth. It had to be 'built up' though, because there are no gums down there (they were removed with the tumor, so I just have a floor to my mouth and thats it) to get a good impression. So what they did was stick one of those long wooden sticks in each of my implant holes (looks like a long wooden toothpick) and then cut them off, and then filled it with the stuff called "Blue Moose" (I think) to take an impression. That was so that the holes didnt get closed up with the stuff that they used, obviously. Then I closed my mouth and let it set.

Well when it was done, it didnt go as easily as they thought (surprised, anyone? I wasnt). The 3 wooden pieces came out of each implant hole but one would not. Of course, they had to remove it before they could take the base out of my mouth (along with the stuff that took the impression) so it took them nearly an hour of twisting, yanking and pulling just to get the damn thing out of the hole. I guess my saliva had mixed in with the solution they used for the impression and caused the wood to stick to the hole very tightly and kinda dissentigrate. It was awful. Finally they got it out but I was so anxious the whole time and scared that they wouldnt be able to get it out. All in all my mouth was propped open from 11 am to 1:15 pm. I was very sore afterwards, because it just takes its toll on your jaw when you arent used to having to open so wide. Also, keep in my mind my new jaw is very very thin, as I only got a couple cm of bone in there from my graft, so any amount of yanking and tugging on the teeh or it really hurts and makes it very sore after. But the good news is they got the wooden piece out, got the metal base out + the impression stuff and sent it to the lab. From my understanding, the next step is they will do an impression of my teeth set in wax, which is supposed to be an easy appointment (cant help but wonder what that means, ha ha) and then the final appointment they will send teeth that are all attached together to the base. Voila! Teeth, and done. For now. God knows for how long.

I really wanted to bring my camera but alas I forgot it again. Next time. I told my dr how I want to write a book and he said they would be able to help me remember all the details if I really wanted to. He also thought I should consider being a dental assistant. I cant help but say I have really thought so as well. It was funny, while I was waiting for my panoramic, the girl ahead of me's image popped up on the computer and I was able to point out all the parts. "That is 2 implants, there and there, right?" "Yes." "Two root canals, there and there?" "Yes." "That's a small bridge of 3 teeth, right?" "Yes." "That is a filling there and there." "Yes." "And there, that cloudy white bit, that is how high her bone goes from her gums, right?" "Yes." Ha! They should pay me for this stuff.

Maybe sometime. I'll keep you posted. As usual.

Good times, my friends. Good times.

tmo967@aol.com (Tina) — Thu, 22 Oct 2009 21:54:00 +0000

Well, yesterday's appintment was....something. The base plate for my permanent bridge was done (yay!!!), but was in 4 seaparate pieces. This is because they cannot make something that is just shaped like the curve of my lower teeth- it has to fit over each implant post exactly so or else the implants could break later on from the pressure of chewing and such. Two of the implants are angled, and two are straight up and down in the bone. So what he needed to do was take off this bridge of teeth, screw each of those 4 parts into each of my 4 implants, and then when they were all aligned and screwed in exactly perfect, kinda melt them together temporarily so it would be the exact shape it needs to be for the lab to go ahead and solder it all into one final, perfectly custom made piece. Got that?

Ahh, if only it was so easy! First, the temporary teeth are really hard to get off. I swear I hear the poor dr muttering under his breath and swearing to high heaven every time he has to take them off; he probably hates me by now. He had to pick pick pick, twist each implant screw and shake them all around until finally they released and came out. That is a ton of strain on my jaw, as I am not used to having my mouth open extremely wide for long periods of time (no jokes, please) and having all that pressure on it was insanely uncomfortable.

Then there is the tension I feel as soon as I sit in that dental chair. Something just comes over me... I start to shake and get really anxious. Like I have said before, it does not get any easier having procedure after procedure done in your mouth, in fact, it gets worse because after all you have been through you just do NOT want anyone touching in your mouth ever ever again. Sooo...once the teeth were off I get that oh so uncomfortable frightened feeling. Well instantly I tasted blood and cant figure out why. The dr looks concerned so I start to freak out. I can feel a bubble or something under my tongue coming from the floor of my mouth...he said it looked like the tissue was rising up under the temporary bridge and was irritated and inflamed. It was bleeding, and he said that he needed to take it off. Um, what?

At this point my anxiety level is through the roof. They then say they need to cut it off with this thing that will cauterize the vessels so it doesnt bleed everywhere. Nice. SO they poke me with needles to numb me up, which tastes awful, and then they make me sit on this thing (all the while I am hysterical, crying and shaking, I just could NOT control myself) that looks like a black pad with a cord coming out of it that was attached to this thing that looked like a long pair of tweezers which I knew were going to cut off part of the floor of my mouth. I joked "are you going to electrocute me now?" but the truth is I was only half joking! I swear nothing would surprise me anymore after what I have been through.

So, I am really upset and scared and I could tell my dr was getting upset with me, which only made me MORE upset and scared because I wanted him to know I was trying hard to compose myself but was insanely afraid of what was going to happen. There was also the fear in my mind "what if they cut this thing and stuff comes out of it, like an infection?" But anyway, they lopped it off and cauterized it, all this smoke was coming out and it smelled just awful. I now know what a burning body smells like, blech. Disgusting. And awful. It turned out to just be excess tissue build up after all of that mess.

So then after the bubble was gone he was able to fit the little metal pieces of the base onto each implant, screw them on and then he used this stuff paired up with what looked like a UV ray thing to I think oh so gently attach each piece together so he could get the exact shape of the floor of my mouth and implants. Then he let it sit, and then had to unscrew it and gently lift it out. This will be sent to the lab for them to solder together permanently. All the while my mouth is tasting like blood and crap, there is slobber everywhere because of the numbing solution and I was just DONE. So he got the temporary teeth back on and told me to come back in Monday for the next step. Honestly, I was pretty out of it, mostly from how I exhausted myself crying and getting all worked up, so I dont remember exactly what he said was next but I am only a couple of appointments away from getting my final bridge of teeth then hopefully will be done, at least for now or until something else comes up. Its crazy to think it is so close after 4 1/2 years of this!

So that is my disgusting story of excess tissue cuttage, cauterization and smelling of burning flesh for the day. Now please, DO go and enjoy your dinners, everyone. Hopefully my next post wont be as disgusting.

And Dr Wong, if you are reading this, you're still my favorite doctor even though when you asked me if I was still mad at you I turned my head and refused to look at you like a 3 year old would. I am sorry I was such a baby. No hard feelings, huh? :)

We can move forward!

tmo967@aol.com (Tina) — Wed, 21 Oct 2009 00:15:00 +0000

I just got a call today...the lab was re-opened! I go in tomorrow first thing. I am not too sure for what but all I know is its to do the next step for the final bridge. Thank God! I was so worried, since we weren't sure when it would be re-opened and I was worried it never would be. Thank goodness for all of the prayers and good thoughts, thank you! I will keep you posted when I know more. Wish me luck!

Stressing a bit

tmo967@aol.com (Tina) — Tue, 06 Oct 2009 15:52:00 +0000

My denture decided to get all floppy again, and for about 4 days I wasnt even able to eat anything. It had never been that loose before and it was very unsettling. Whenever I even drank anything I could feel it lift up on the right side where it had previously cracked, but the whole thing just felt seriously unstable.

So I went in yesterday to see if they could tighten it. It had cracked again in the original broken spot, and I dont even know how since ever since I got it fixed I was scared to eat anything anyway, so I was living on extremely soft foods, but I think it was just going to re-crack anyway because of the location. They ended up having to remove the teeth....when he said that at first I started to cry. He asked me why I was crying and said he needed to remove them in order to fix it properly, and also to clean it for me. I guess it was just so scary for me to have them off for a lot of reasons. The biggest being that they would not be able to get it back on or something would break in the process. But he also needed to check one of my implants that he said he was worried about. That scared me even more, because I am down to only 4 implants, and with a whole bridge of teeth that need to be anchored if I lose even one this whole process just isnt going to work.

So they got the teeth off, and it was pretty rough on me. To be honest, I was surprised at the violent emotions that came out when they took them off. As soon as I felt that familiar lip-caving in sensation of there being no teeth in there I cried. I cried the whole time he was fixing it, and until it was back on. I guess it just brought back memories of all the time that there were no teeth in there, how people stared at me every day and I just had to deal with it and suck it up. It was just a very helpless feeling I guess. But anyway, it turns out the implants look okay, the one he was worried about had just loosened from the screw over time, so it was still firmly anchored in place, which is good. Loosening of the actual implant would have meant a failure, which we really shouldnt be having at this point so that was worrisome, but hey its me, right? So I was scared. But after quite a bit of stress he got the teeth back on.

I can honestly say I havent felt them this anchored in a while. It is so nice to be able to eat and move my jaw around and feel the teeth staying perfectly in place (for now I guess). The biggest problem is that they are only firmly down in 2 of the implants (the ones on either side in the back) because the two closer to the front had tissue collapse back over the hole and they werent able to get the implants screwed back in firmly. He said when they do the permanent ones they will have to remove some of the tissue covering those implants to get back to the hole, which of course doesnt sound pleasant, but we'll cross that bridge when we get to it. So I am running on only 2 implants being anchored to the bridge right now, a temporary fix, and it makes me nervous. As a result I am really limited still in what I can eat which sucks, because at this point I should have had the permanent bridge in and be able to eat almost anything but I still cant. I miss eating chips and sandwiches on rolls and steak. But hey right now I am just happy there are teeth in there still and that I can eat some things and go about and people dont stare at me like there is something wrong with my face(as much). Its funny and sad that after all the downfalls and issues I've had to deal with how my expectations and what I am 'happy' with have really lowered, huh? But such is life.

Just wanted to update. At this point its just a matter of trying to keep this bridge anchored and in one piece until they can pay the lab and finish my permanent bridge. God knows when that will be, but I am praying every day for a miracle.

Hope all is well with my readers out in blogland.

Broken bridge, a temporary fix, and budget cuts

tmo967@aol.com (Tina) — Tue, 22 Sep 2009 03:36:00 +0000

Ok, so this has been a rough coupole of weeks.

First, last week at work I broke my lower bridge of teeth somehow. A piece just snapped off. I was eating a donut, but I am fairly certain it happened a week before when I was eating something else. I heard a loud cracking sound in my right ear, and funnily enough it didnt alarm me too much, as my jaw makes all kinds of funny noises (as jaws made partially of titanium tend to do here and there). Well, I was at work and the back tooth on the right just literally fell off with part of my bridge attached to it while I was eating on my break. I freaked out of course, and went home from work. Where it had fallen off was so sharp that it was cutting into the soft tissue of my cheek- it was awful. I went to the hospital early the next morning and there was pretty much nothing else they could do. The funny thing was, that I no longer heard that odd creaking sound I've been talking about, and the rest of the bridge felt very firm, unless I chewed on the other side. Of course, the whole thing is off kilter now, being that one tooth in the very back is missing, so chewing was off limits all weekend. As Dr. Wong told me- imagine a bookshelf, and you putting so much pressure on one side that the other side just flips up and tosses all the books off. That is how it was with my bridge- putting too much pressure chewing on one side could snap the whole thing in half, and ruin my implants in the process. They told me modified liquid diet, soft foods diet, so I ate macaroni and cheese, and anything else I could mostly just swallow without choking myself to death. Sigh. They pretty much just said come back on Monday when Dr. Wong is here, and also told me my xray looked like I hadn't damaged the implant when I broke the back tooth off. So thank God for that.

So today I was at the hospital most of the morning, Dr. Wong didn't want to remove the teeth (for obvious reasons, most being that it takes the poor guy at least an hour to get them back on, you know, me being the patient with all of the "fun" issues). So he decided to repair it with it still being in my mouth. That was fun, he ended up pouring some kind of acrylic/glue-y type substance (just a guess, I didnt ask but it smelled like paint thinner) over the broken area, after getting the piece back over the exposed implant and screwed onto it. Then I had to bite down on it for 5 minutes, while it hardened over the break. It was awful. It burned (he said to wait til it got hot then tell him, but it instantly burned, since I think my cheek was so sensitive from all off the cuts the broken side gave me over the weekend) it also tasted awful and smelled. I wanted to gag. Well, it seems he got the piece re-attached, hopefully it wont be for much longer that I have to go with this temporary bridge because I haven't been eating hard things, mostly just soft things, and this still happened.

The worst news I got today was that because of budget cuts, the hospital was unable to pay the lab where they do their work on bridges and such, therefore, I wont be getting my permanent bridge until they decide to give the hospital the money they need to pay the lab. In this economy, who knows how long that could be? And unfortunately my bridge was only made to be temporary. And I know I am not the only one who's bridge has broken; Dr. Wong mentioned he had been doing a lot of temporary repairs just waiting for the budget to be fixed so they could get back into the lab to finish people's permanent bridges. I pray my denture can make it however long...I just cannot be without teeth, I am grateful my bridge broke where he was able to fix it, and that I wont have to go without, as I am sure some people are having to do. It's awful when people have to go without things like teeth in hard financial times like these. I cant imagine if they said they just had to take the teeth off and couldnt give me a timeframe of when they could actually fix them. As it is, I am still on a soft diet for the next few days til this fix "sets" and I am hungry! Its rough.

So, if you read this I could use some prayers, please pray that my temporary denture holds up? And please pray that something works out in the state's budget that my hospital can again re-open their lab so that people like me can get things we need to survive. Having teeth isn't just a cosmetic issue anymore. What a bad situation... as always I know others have it worse than me. Some are trying to come up with the money to cover their implants and teeth, and I know I dont have that issue (being a case study on ameloblastoma at this hospital) but still- if you could find it in your heart to think of me, and of this hospital, please pray that things work out. I dont know how much longer I can hold out. :(

Still waiting

tmo967@aol.com (Tina) — Mon, 07 Sep 2009 16:59:00 +0000

I wonder how many of my posts are titled that?

Yes we are just waiting these days. I am working a lot of hours, so I have been tired lately but it is very nice to be out and among "real" people. You can forget that you have anything else going on when you try. Next week I am going to call and see when my next appointment will be. Poor Dr Wong has to come out on his days off to work on me, because it takes so long every time and he cant fit me into his regular schedule. I am not too positive what the next step is, so I guess it will be a surprise. But I will, as usual, keep you posted when I know more.

Dr appointment- the good the bad and the...ugly?

tmo967@aol.com (Tina) — Thu, 06 Aug 2009 15:05:00 +0000

So yesterday I had my appointment that I had been dreading. There were some good parts and some bad parts. Good news is that I managed to make it through without crying or anything. I get really worked up when I am having too much done in my mouth, mostly from fear of pain after all I have been through, but I swore to myself I wasn't going to do that yesterday and I ended up doing really well. It took a while to get the teeth off. They had to pick at the "filler" they put in there, which is this thick cement-like stuff they stick around the posts I guess to keep it sealed or so things dont get in, I wasn't too sure about why it was in there. Anyway, the picking hurt because it jarred my jaw around too much (it's really thin, so jarring movements do give me pain) so he ended up using a drill on a slow speed to drill it away. Then he picked the cotton out that was also under there, and then he had to work on each individual implant to loosen the bridge of teeth off the implants.

It did take a long time and what was the most uncomfortable thing, I think, was having to keep my mouth open so wide for so long. I am sore today from it. Finally the teeth came off, and it wasnt as bad as I had expected. I kept apologizing if there was anything stuck under there...I do do my best to clean under there but it is really hard! The space is so tiny but still does collect food under it. Then, after the teeth came off, he had to screw these little metal things into each hole, I guess to keep them open. When you remove the denture, the extra tissue that is around the holes instantly close back over them and it becomes difficult to find them again. One of the holes he was unable to get anything back into it so he just had to stick something on top of it so he knew where it was. He then took an impression of my top teeth (which always makes me gag) and instead of taking one of the bottom from inside my mouth, he used the bottom of my denture to take the impression. Very smart, and that stuff is disgusting so I certainly wasnt complaining! He then poured it into a mold and made an image of the way my top and bottom teeth come together, as well as had the impression from the bottom so that at the lab they can now make the metal base to perfectly match the floor of my mouth.

We basically did 3 appointments in one looooong appointment. Then a couple hours later it was time to put the teeth back on. He went in and took the little metal things out of each hole, then stuck the denture on top. It was hard to get it aligned again the right way (the denture has little corresponding metal holes over where each implant goes to attach it to the implants) but he got it on there, he then packed around each implant area with more cottom, and screwed the whole denture back into place implant by implant. That took a while but it wasnt too painful. I did have to go home and sleep after it all, it was pretty emotionally exhaustive.

Phew! Sorry such a detailed explaination of the whole process, but I know some of you are going through this procedure or are waiting to, so you know what you have in store for you. I am sure I left stuff out, but it was a bit of a daze for me, mostly since I was so worried I just ket waiting to get some bad news.

A couple of other things happened as well. First, remember the "discharge" I said I was having? Only in the mornings, but on the left hand side it looks a little oogy sometimes until I clean it, then it doesnt happen the rest of the day. Well, Dr Wong said it did look a little puffy there but when he called in my other dr to look at it he said he thought it was probably that the denture had come a bit loose there and it was build up from food and such getting trapped in there. Honestly, Dr Wong said that if he was worried he'd be the first to tell me but he wasnt, and I trust him. So they went ahead and put the teeth back on. We had two complications from that point. One was that they were unable to get one of the implants to screw down onto the teeth again. I think that it was the one where the tissue collapsed over the hole again but am not too sure, but it was on the right side where I only already have one implant left since the other one came out (originally I had 5 implants placed). So I am down to only 3 implants being tightly secured. He said that he is just going to worry about that other one more when they put the final teeth on, as it was too much hassle since I am only going to have this bridge of teeth on for another, what, maybe 8 weeks or so.

The other complication was he said it appears that my whole bridge or lower area has "shifted." Meaning, it is no longer in the middle for some reason but he isnt too sure why it has shifted. That did worry me, I instantly thought of something being in my jaw again shifting my denture (ie, recurrence, I think we all worry about this constantly), but again Dr Wong said he was not concerned at all about it and that it would (hopefully) all work out in the end. Mostly it just means my bite is off a bit. They check your bite after the teeth are on, basically they take this little strip that looks like foil but isnt, and stick it in between your back teeth and tell you to bite and make a chewing gesture from side to side. Then they check the other side. It leaves an impression in the paper so he can see how my bite is, and I know on the left it is way less than on the right because of the shifting. But again if he says not to worry I'll try not to.

My final complication was after I had left already. I came home and ate some lunch (peanut butter and jelly sandwich). It felt great- no creaking or movement and I was able to chew really well. I was so pleased...until near then end when I felt it come loose. *sigh. So now my denture on the right feels SO unstable. I know it is related to the fact I only have the one implant secured on that side now because of that other one not being secured, but it is so disconcerting I cannot even tell you. When I move my jaw side to side, I hear the unsecured implant moving around in there. It bothers me. I know from this point on I will have to eat soft things until I can get this temporary bridge out and my new permanent one in. It's just frustrating, as it seems there is always always always something more to deal with. I am worried still a bit but not as much as I was before. I am still worried about that one area but am hoping now that the teeth are very tight over there it will work itself out. I got more of my medicated mouth rinse (Hibiclens) so will be using that faithfully still. Also, I am worried about the shifting. As with everything else I will just have to take it one day at a time.

Finally, this month it has been 4 years almost to the day that I had my first surgery. My son was very young, I think only about 6 weeks old, when they went in and took out my ameloblastoma. Its bittersweet looking back at all the time that has passed. I really have come so far in so many ways, and regressed so far in others. For every step I move ahead in this process I seem to take one back emotionally and mentally, but I am still struggling through it all. Praying seems to help a lot.

And I am out now for the day, this has been a long post! As usual, I will keep you posted, faithful readers.

Still waiting and worrying

tmo967@aol.com (Tina) — Thu, 23 Jul 2009 20:13:00 +0000

I cant shake the worry that when they go in and take these teeth off for impressions that we are going to see something bad underneath. It is so disconcerting not to be able to see what is going on underneath. I think that is why I am always anxious. I havent been able to sleep very well these days, I think it is getting to me.

I swear on the right side where the gap has widened I feel like a ridge or something when I poke my tongue in there. It almost feels metal-ish, but then I think how could I feel anything metal there on the floor of my mouth. Then the bad thoughts creep in like what if that is something bad happening? What if my bone is eroding for some odd reason? What if what if what if?....blah. I wish I could shut those thoughts off.

Soon, though. I go in August 3rd.

My circulation to my face is kinda messed up too. Lately my face has been getting really red and warm for no reason. It happens when I overwork myself but then it doesnt go away for quite some time. It's embarassing.

Sorry I'm so darn jolly lately!

=(

tmo967@aol.com (Tina) — Tue, 14 Jul 2009 13:48:00 +0000

I am feeling a little down today.

I had something really embarassing happen to me yesterday. Well, actually two somethings that have brought me down a couple of notches. I am trying really hard to forget them but they took blows to my already fragile self esteem and it's just been kind of a rough morning for me today because I am still thinking about it all.

Yesterday I was in the car driving to get my daughter from her Day Camp. A bit in front of me is this car that is filled with guys. Well, they are leaning out the window and yelling things at me, which I can't really hear because my window is rolled up, but my son's window was rolled down. I was really embarassed and just kept driving and not looking at them. I ended up being at the light next to them, which I was trying to avoid but couldn't because they got into the lane next to me. Grrrr. So anyway, at the light I hear them saying nasty things, cat calling and all of that. I gave one of them my evil-mom-dirty glare and one of them was like "you're an ugly %$#@! anyway!" and they all started to laugh at me. I was beyond mortified. I literally wanted to die right there.

So I was feeling really upset and embarassed when I pulled up to Ashley's camp and she takes the time to inform me that one of her "friends" had made fun of me. I said "why?" she said "because they asked me what happened to your chin and that it stuck out funny." That was the last straw for me. I got really upset...I know I shouldnt care what a car full of little delinquents and some 4th grader said about me, but I do. It sucks. I get to this place where I think I am okay with looking "off" and then things like this happen. I mean, its a big difference from having to go out in public with your face swollen so you look like the elephant man and your chin caving in and what I look like today. I look fine from the front and weird from the side, and I hate that. I dont know if it will ever be fixed though. I am trying to not be greedy and be happy with how I look but its really hard when little things like this happen.

SO, that is why I am down today. I thought I was over caring what people think about how I look. I wish I could be there. I am trying really hard though. Hopefully one day I can just put this behind me and just not care anymore. I think what I hate the most about it all is it makes me feel so weak and lame and vain and I really hate feeling like that. :(

Infections

tmo967@aol.com (Tina) — Wed, 08 Jul 2009 19:44:00 +0000

Ok so I am pretty sure after almost 4 years of non-stop surgeries and medical procedures my body has decided it hates me. Really. I am also fairly certain my immune system has decided to completely hit the road and go find some other healthier body to take care of, because mine hasnt been working for crap ever since I started this journey with ameloblastoma. Wish it would have sent me the memo.

Every time I catch a common cold, or am around someone who is ill, I catch it. Its not a matter of if I will, but when. I literally can count the number of days after I come in contact with someone who is ill when I will catch it, and that number of days is 2 my friend. Two whole days of being healthy then BAM! I have whatever illness I was in contact with, except I have it times 10 and am completely miserable. Then 9/10 times I end up on an antibiotic of some sort as well due to an infection. Like I said, immune system has hit the road, jack.

My husband and son had colds last week. Chris never gets sick, and when he does it last about 24 hours then he is up and about and just dandy. He's lucky I love him so much. Actually, we always blame it on the military's medication they pumped into him during boot camp, because after that he was just NEVER sick, he has the immune system of...well...a really healthy person I guess. Anyhoo, so he was pretty sick with this cold, and it lasted about 5 days which was unusual for him. My son had it as well, and he is still getting better, he just still has a runny nose. So on Saturday, about 2 days into their sickness, I began to not feel so hot myself. Come Sunday after work and I was in bed with aches, fever and my nasal passages filling with mucous and crap. Well every day has been a bit worse since then, and now my ears and chest are filled with this stuff. So off I go to the dr today to figure out what it is. I am about 99% sure it is a sinus infection again and I will end up on antibiotics again. I am forever on antibiotics. I just ended a round of them for a serious UTI and I had to have 2 rounds of it to finish it off. I wonder if they shouldnt just keep switching them up on me and just keep me on them forever to safeguard me from every little sneeze, cough and handshake I come into contact with for the rest of my life. Grrrr.

Anyway, rant over. I'll keep you posted. Send some healthy vibes my way please, if you can spare them. I'd appreciate it. And if anyone sees my crappy immune system running around somewhere, tell it I need it back in full working order, stat. Thanks.

Well...

tmo967@aol.com (Tina) — Tue, 23 Jun 2009 22:57:00 +0000

if the doctor is not worried, I will try not to be.

I just think my biggest fear is that when I go in and they take these teeth off, something will be going on underneath. I absolutely hate that I cant look for myself and see what is happening (even though I can see a LOT more now than I could before, and I guess it looks ok??). It makes me feel sick to my stomach to think about anything happening as far as I have made it. I dont know when I will be able to sit back and just be happy about how far I have come, rather than worrying about every twinge, ache or movement I feel. I hate that the most.

Something's happening...

tmo967@aol.com (Tina) — Mon, 22 Jun 2009 15:28:00 +0000

For some reason the gap under my denture is widening to where I can see under it in places I wasn't able to before. I am getting really worried, but when I call they just say that it is probably fine and not to worry. I just dont get why it would be changing now, so long after surgery unless that is just the way it is still healing. I cant stop thinking about it and being worried.

Great news

tmo967@aol.com (Tina) — Tue, 09 Jun 2009 15:15:00 +0000

I got great news at the doctor yesterday. We are ready to move forward to the final procedure for the permanent bridge of teeth! I am crazy excited about it. It is going to be a somewhat long(ish) process, with a series of 5 appointments, each appointment with something different happening. I didnt quite follow it all, but of course I will blog about it as it all goes by. The thing I did catch was first they have to remove my bridge of teeth to make an impression that will be sent to the lab (scared about that and wonder if it's going to hurt- I've always been under anesthesia when they did that). Then they make a metal framework for the base of the new bridge of teeth and send it back. Then I guess I go back in and they have to fit it in there and "tweak" it to see what all needs to be done to make it a perfect fit. It has to be perfect, because your bite and everything have to match up just so. So I guess that will take some time as well, and then they send it back and they attach the bridge to the metal framwork, and then put it all in. I feel like I am leaving something out though...hmmm.

I did make a joke that I felt like a European car and all my parts had to be ordered. My doctor said "it costs about just as much." Scary thought, that.

Well anyhoo, I am excited like I said...this bridge has been creaking a lot when I chew on the left and its very nerve wracking. I will definitely have to stick to softer foods, as it would be my biggest nightmare for it to snap or something and me be stuck with no teeth again! I can chew meats and things but when I take too big of a bite of meat and chew on the left I hear it get creaky. Also the final bridge wont have that huge gap on the right side so I wont have to worry about chunks of food going under there. That has been the biggest pain ever- although the Super Floss is working pretty well for that.

They also briefly discussed what they are going to do about the indentation between my chin/underside of my face...it sticks out and it looks very odd and "pointed" from the side, I am so self conscious of it...they passed on using fat from my backside because they said my body would just re-absorb it. What it sounds like is I have an option in terms of different "fillers" but none of them permanent. One of my doctors said he was going to do some research on some more permanent ideas and see what they come up with. Of course first priority is getting this final bridge in, and working before we worry about the other.

So begins (hopefully) the last leg of my journey. Wish me luck! And of course I'll keep you posted with losts of pictures for the curious. :)

Sorry I've been MIA

tmo967@aol.com (Tina) — Wed, 03 Jun 2009 00:27:00 +0000

Things have been crazy...I've been working a lot of hours, all at night and on the weekends so when I am not at work I am exhausted and chasing my kids around all day long. Its rough! I go in Monday to see my dr's again, its been a while. I havent had any bleeding so hopefully thats good but my jaw is SO creaky. I really hope its just the teeth and not the actual plate/bone that is creaking! They are going to take an x-ray that day so we'll see if anything is going on in there we should be alarmed about or not.

Hopefully the permanent teeth will be going in soon with no complications. *fingers crossed.*

Meh, more blood

tmo967@aol.com (Tina) — Thu, 07 May 2009 15:39:00 +0000

Ok so this morning there was blood on my side of the bed where I lay my head...not a ton but enough to worry me. I called the hospital and the dr said not to worry. I wish I could not worry! I spit out blood twice yesterday too, just a tiny bit but still. He said I am probably irritating the tissues up underneath the denture when I eat, and truthfully I know that is probably the case because food gets stuck under there all.the.time but in the past bleeding has always = bad stuff, so I cant help but be anxious over it all.

He told me to go get stuff called "super floss", its a really tough floss that I can thread underneath and work back and forth to try and get old food out. I am going to go look today, hopefully I can find some, though I have never heard of it. I am anxious for the real bridge of teeth to be put in, the bottom will go all the way down to the floor of my mouth and I wont have that huge gap underneath so all of these issues will hopefully be resolved then. I just cant shake the nagging feeling that something is wrong, though, and I hate that.

*Sigh. Someone tell me not to worry! :(

Yuck

tmo967@aol.com (Tina) — Sat, 02 May 2009 20:38:00 +0000

I spit out a little blood again this morning when I woke up...I rinsed with my medicated mouth rinse and it didnt bleed anymore, then when I laid down again this afternoon to nap when I got home from work (I worked an early shift) I tasted some more blood when I woke up and spit out a little bit. I am worried, but trying not to get too carried away with worry. If it bleeds a lot, I will go in. If not then I will just hope that its irritated tissues again. :( We ate Japanese food last night and I did have a lot of rice get trapped under there, so I am wondering if some may have worked its way in and made the area super sensitive. Hopefully that's all it is. I continually feel like I am on the brink of some new kind of medical disaster- will that feeling ever go away?

Book Titles Anyone?

tmo967@aol.com (Tina) — Fri, 01 May 2009 15:52:00 +0000

Here's just a few I've been tossing around lately. :p

How Luck Kicked Me in the Nuts- Twice (But You Can't Keep a Good Girl Down!)

Congratulations, It's Not Cancer...But We're Going to Have to Remove Part of Your Face!

The Tumor That Ate Chicago (And Part of My Face)

You're Going to Have to do What to my What using my What? (And Other Assorted Witticisms From an Ameloblastoma Patient)

Creaky jaw

tmo967@aol.com (Tina) — Tue, 28 Apr 2009 22:46:00 +0000

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.

All looks fine

tmo967@aol.com (Tina) — Mon, 20 Apr 2009 20:52:00 +0000

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!

Bad scare today

tmo967@aol.com (Tina) — Thu, 16 Apr 2009 00:15:00 +0000

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. :(

Scoop and curettage

tmo967@aol.com (Tina) — Fri, 10 Apr 2009 15:15:00 +0000

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.

Gah!

tmo967@aol.com (Tina) — Tue, 24 Mar 2009 15:53:00 +0000

Life is crazy...I am working again, but I swear I will be back here in the next day or so to post an update. So far all is well. As they say, no news is good news, especially coming from me! :)

Teeth pics and more

tmo967@aol.com (Tina) — Sat, 28 Feb 2009 04:09:00 +0000

As I promised:

This is an awful picture of me (it's been a long day), but see how much more "beefed out" my lower lip is? I can smile with at least my top teeth showing now without my lower lip sinking in:

One of my hip scars, just to see how light they are now (someone asked me about this, it's been almost 2 years and they get lighter all the time). They follow the contour of my hip bone:

And this one, just for kicks...our cat sleeps on her back like a dog every night...this is her sleeping with me the other evening when I fell asleep watching TV after a long day:

Post op tomorrow

tmo967@aol.com (Tina) — Mon, 23 Feb 2009 01:14:00 +0000

I go in early to see the surgeons and prosthetics dr tomorrow. I am so glad because this is getting ridiculous! I cant barely eat and I cant even talk anymore it hurts so bad- the underside of my tongue is all raw and cut up on the left side. It looks like they either shaved the corner off the very back molar on the left side of the denture or it broke because there is a jagged piece just sticking out and that is what is doing all the cutting. So I am looking forward to having some relief from that- plus I am starving! I've already lost 5 pounds in less than a week (which isnt bad, I could stand to lose about 5 more but starving to do it is no fun!).

What has me a little worried is I am noticing whenever I eat or drink anything it gets caught up in the space under the teeth...there is a gap a few centimeters tall between the floor of my mouth and the denture and I am constantly having to clean it out and rinse with my peridex. It seems like no matter how careful I think I am, I find something trapped under there later! I am just so frightened of getting another infection under there, especially since I had one when I went in and for some reason my body doesnt show signs when I have one (fever, fatigue, pain and redness etc). I am going to end my antibiotic on Tuesday and I am going to ask for another week's worth tomorrow just to be sure...I cant help but have an ominous feeling about that infection I had, especially due to the fact that now there are teeth on top of it and I cant get a good look at it anymore and feel I cant clean it properly. So, I am going to talk to my surgeons tomorrow about that and see what they have to say.

I'll keep you all posted. Someone eat a big steak for me, please.