Some attractive pictures of me

I promised pics of the healing implants inside my mouth so here they are....its just impossible to try to look atractive while you are doing this to your mouth, so bear with me.

The metal things are the healing caps on top of each exposed implant...there are 5 total but I couldnt get a picture by myself of all 5 of them. Once they are done healing, they will screw a new top on each one and those will attach to the permanent bridge of teeth.

So, here they are:





And one of me with the temporary bridge of teeth in there:

Just a picture

My 3 year old son and I at Pier 39 in San Francisco.

Where's the teeth?

Well, I sure as heck wont know...for at last a few more weeks. :(

I went in today for my post-op follow up and they said that with 4 out of 5 of my implants my soft tissue is trying to grow back over the exposed implants and healing caps. I guess after all this time of my immune system not working and healing me that it's decided that it wants to OVER heal me, so it is making excess tissue like crazy and trying to cover up what the doctors worked so hard to expose on Friday's surgery. They have to take off the healing caps in order to make an impression for the new bridge of teeth that will go over the implants, but today they discovered they cant because they cant get the healing caps off since they are half buried back in newly formed soft tissue. SO they have to put me under anesthesia they said because they cant use just novicane because of all the nerve damage in the area and they will have to dig around each implant cap to get it off and it will be extremely painful if I am awake.

The thing that sucks is my parents will be out of town starting Saturday until December 5th, so we have to wait until they get home from their trip for me to be put under and this procedure done. Chris just cannot take any more time off of work and I dont have anyone to take me to the hospital to do the procedure without one of my parents to do it. I am bummed, because Chris and I really were hoping that these teeth would be in before we get married end of December but I am just not sure if that is going to happen now.

Anyway, other than that the area looks very good they said and nicely healed from my surgery Friday, it is the fastest I ever healed from a surgery and the nicest I have ever healed without any complications, and for that I am greatful at least.

That's the latest news for now.

Appointment tomorrow

I go in for them to check the healing on my implants and to have the doctor fix my denture so it can be worn while everything is healing up. I am looking forward to being able to wear the denture again. I am not looking forward to having the stitches removed (I have a few in there around a couple of the implants). They always say it wont hurt but it does. If I am ever going to be in any sort of field of doctor work I wont ever tell a patient that removing stitches doesnt hurt. It almost always feels like crap, especially when the area has recently been operated on and is tender! You just dont want anyone touching you there for a long time, and it sucks.

As usual, I'll keep you all posted.

Top 5 reasons you'll be way cooler than other people after having had an ameloblastoma

5. People will never punk you again. Why you ask? Because you can always say “Hey man- the last guy that messed with me was ground up and his rib bones were used to make me a new jaw by my personal surgeon…any questions?”


4. You always have an opening line when you walk into a bar to get girls/guys to notice you. “Hey, my jaw is made up of bits of dead people and metal scraps…so, what’s your story?”


3. You can always protect your children at school. When they have a bully harassing them, simply drive them to school one day, find said bully, and then pull your pants down a bit and show them all your hip scars and tell them you used to be a ninja and haven’t yet lost your fighting abilities so they better back off your kid or else.


2. You’ll be the queen or king of the “one up.” For example, if anyone is complaining about how rough life is, or how they just are SO sick they feel like they’re gonna die, or some other mundane gripe, you can always say “Yeah, man, I know what you mean. After my last surgery, after they took all that bone out of my hips/removed my fibula/ [insert appropriate surgical procedure here] and there was just blood pouring everywhere and I couldn’t walk for ages without excruciating pain or eat for days….shoot man, I feel ya. Rough times.”

And the number one reason why you'll be way cooler than other people after having had an ameloblastoma:


1. Nothing surprises you anymore. For example, you could go in for a routine check up and have your oral surgeon tell you he has to glue a dog fetus to your cheek and grow it for a year and then harvest the bones from it to graft into your jaw- and it doesn’t even make you flinch.

Still no appetite

and it's wearing me out! Taking care of two children alone all day is exerting more energy than I feel I have to give. I am not taking in enough calories so I end up feverish, jittery and exhausted at the end of the day because of all the running around I am doing. It really stinks trying to force myself to eat when I just am not into it. Or I think I want something and then cant eat it when I try. Poor Chris, I begged and begged him for a slice of pumpkin pie last night, I just wanted it so bad, and of course being the wonderful guy he is, he runs to the store to buy me a slice, complete with whip cream. I took a few bites and that was it. Hopefully this will pass soon, it is almost noon and I am still in my jammies and Aron is begging to go to the park to play and climbing the walls like a typical 3 year old would do being so coooped up. Would it be too odd to go to the park in my pajamas? :P

I am feeling back to my old self again now, which is nice. Its odd because after every surgery it seems like my stomach shrinks and I just lose my appetite. The first few day are always the worst, as you are really hungry but you just cant chew anything and all your 'food' options pretty much suck, so after those days you just decide it would be better to starve than to eat another bowl of mashed potato/chicken soup/potato soup/oatmeal/scrambled egg, etc. So then by like the 4th or 5th day your stomach has just decided it is okay with not eating and I guess gives up telling you it wants food. Yesterday I had two scrambled eggs and then didnt eat again until dinnertime, then I had a few small bites of cheese enchilada and a few bites of refried beans (always swallowed directly- no chewing!). This morning I had to force myself to eat because I had a small cup of coffee and had started shaking so I made some scrambled eggs (again, blech!) and then took two bites and that was it. I am more thirsty than anything and have been drinking tons of water- I feel like a camel! It's odd because this happens after every surgery and it always takes me ages to get my appetite back.

Other than that, the blood clot over that one implant is completely gone, but it looks half embedded in the skin like the skin is trying to grow back over it, so I hope that wont be a problem when they see it on Monday. I am also pretty tired because I have to set my alarm for 12am, 6am, 12pm and 6pm to take my antibiotic and the 12am/6am wake up always sucks as I have a hard time falling back asleep. I cant wait until I am done with those antibiotics!

Post surgery update

Sorry it has been so long! I have mostly been sleeping and resting, but am back to feeling about 99% today which is the fastest I have ever recovered from a surgery before! The surgery itself went pretty well. The doctor said they had a difficult time uncovering the implants so it went a bit longer than they thought. Then, after I woke up, they sent me to do a panoramic X-ray (it gives you a 360 view of the entire jaw) and found that the cap was not on all the way on one of my implants and there was some excess bone sticking out preventing the cap from going on. So after much teasing about how "these things always happen only to you, Tina!" they had to numb me and shave that extra bit off and put the cap back on. It was a lovely experience, I'll just say that much, as I do not stay numbed for long. But then they said all was well and sent me home. I came straight home and slept, and that night had some strained potato soup and went back to bed. Then the next day I pretty much slept off and on the whole day as well.

On Saturday I noticed that each of my implants had a blood clot on top of it, so you couldnt see the metal caps anymore and I felt a bit worried but tried not to get too worried. Then I noticed the implant where they had had to go back in, the blood clot on top of that one was huge, about the size of a molar, maybe bigger. It felt all bubbly too like the skin was blowing up in that area like a balloon. I started to stress about it but when I woke today I noticed it has diminished in size, to where it is only covering the top of the implant, and all the other clots are gone! I feel so much better. I think it was just the added trauma of having to go back in and mess with that implant some more that made that clot larger. So, I think it will shrink down and come off like the others did.

The thing that really bums me out, is I thought this was IT for the implant stuff but I learned this is what they call "Stage 2" of the implant process, which is 'uncovering the implants.' They basically have to wait now for these to heal, so I cant even wear my bottom denture. I was really upset when I heard that, as I have a huge fear of my lip caving in again, though I remind myself that happened after a year and a half of no teeth in there, not one week, but still the fear is there. Plus I feel so embarassed being out and about and when I talk I lisp again, because I have been so used to teeth being in there for the past month or two. So I probably will stay home a lot this week and veg out here, though I do go out for things I have to go out for. Its so easy to forget what you have been through when things start to improve, isnt it? Oh and as far as meds go, I am taking my penicillin regularly (every 6 hours) but I haven't needed my codeine since the second day. Yay!

Anyway, I see the prosthetic dentist next Monday, and he is going to shave the bottom of my denture so I can wear it again over the healing implant studs. I believe the next step is they just screw a different top onto each implant and it attaches to the teeth, so really the next step will be the final one. I dont even think that involves a surgery either, so hopefully I will be done with surgeries for at least a while after this. I havent been in the mood for any picture taking, but will try to take one later on, all you can really see is the metal balls of the heads they screwed on to the tops of each implant.

I'll keep you all posted...thank you for the prayers and good wishes!

Surgery tomorrow

I wasnt too nervous until they called from the hospital to confirm my 'oral surgery appointment.' *Sigh. I dont know why but I have just been trying not to think about it. We actually have to be at the hospital by 6:45 am, which is soooooo early, but hopefully it will get me in quickly and done even faster. They said it should only take a few hours.

Tonight we're going to dinner at my favorite Japanese restaurant, and then nothing to eat or drink for me after midnight.

I'll update you all when I can, wish me luck that all goes well.

Only 4 days to go

and I am a nervous wreck. I feel sick thinking about it, worrying something might go wrong. I just want Friday to get here and be done with already.

Sorry its been so long

Just waiting for my surgery, it is in 6 days and I feel so anxious about it all. Usually the week before a surgery I get sick to my stomach, my anxiety is back in full force and I am really worried and tense. To make matters worse, Chris is leaving unexpectedly for a trip for his work for the next 4 days so I will be here at home dealing with my stress all alone. I am not looking forward to it.

I am sure most will think after so many surgeries, surely it gets easier? But really, I have developed such an unnatural fear of the doctors and surgery. Its like my mind associates surgery with pain and complications so I just get so worked up about it all, even something small(er) like this procedure. As soon as its time for that IV line I just break down and start to shake and cry, and the nights before I go in I worry about going under and never waking up again. I have mentioned before I am a bit of a control freak, and going under anesthesia, even for a short time, is totally letting go of any control and giving yourself up to someone else entirely and that is just so frightening for me. I know this is a tiny beans surgery compared to what I have already been through (13+ hours, anyone?) but it is still no less nerve wracking.

As usual in the days before and after my surgery there will be more blog posts and pictures. I know many on my ameloblastoma board are wondering what the implant process is like so I will definitely keep you all posted as to the procedure and the healing and how it all goes. Hopefully smoothly this time, as I have been out of the woods far to long to go backwards now. Wish me luck!

Implant surgery scheduled!

Or I should say, they are attaching the teeth to the implants I already have, on Nov 3rd- only a couple of weeks left! This is one of the final stages of my reconstructive phase and I cant wait. I am trying not to get too excited because I dont want to jinx myself. I am trying to prepare myself for the "actually, we have to do one more thing before we can do this" speech that I may get, and that is hard because I just want to be excited, we have been waiting SO long for this. It has been over 3 years now and I just want to get there already!

I do still have a couple of small cosmetic procedures left to do but this is the big one we have been waiting for. Of course I will keep you updated with pictures and the steps of the procedure for those wondering how it all works. They told me they want to try to do it without putting me under, it's supposed to be a fairly easy procedure but I do freak out easily, so just in case I am not to eat or drink anything after midnight the night before. Please keep me in your thoughts that we may finally be reaching the end of all of this.

Keloids and worries

SO I am fairly certain that where they did the vestibuloplasty on the floor of my mouth is 'keloiding' up all over the place. Remember that spot in the front where the metal was exposed? Well it looks like it is "bubbling up" (the only way I can describe it) like the soft tissue is healing all lumpy and it is starting to grow upwards instead of over the metal parts like the doctor said he thought it would. It has been more noticeable lately like much more lumped up, to the point where I was worrying that the amelo could be returning. But when I mentioned it to my doctor last time I was there he said it was just the way the tissue was healing. I remember when I got my ear cartilegde pierced and then took it out, I got a huge keloid and my doctor said some people are just more prone to keloids than others. Well I think that is what is happening here but I am still worried. I am concerned because I am not sure if my denture will fit much longer if it keep growing upwards the way it is for one. And for two, I am concered that they are going to want to operate on that area somehow before they can do the implants because of the way it is growing upwards all bumpy and huge like that. It is a lot more noticeable this past week than it was before when I was last there. I know the chances of the amelo returning are slim and its just a keloid but it never stops nagging me these days.

That lead me to think about the future, I mean I cannot rely on my doctors for reassurance for the rest of my life but the truth is every time there is one little thing I notice it puts me on edge for days at a time. I usually dont feel better about it all until I see my doctor and tell him how I am feeling and he reassures me. After these last surgeries are over how am I ever going to get on with my life and feel like I can live again without waiting to go to my next doctor appointment and talking about this damn thing and what will happen next. I refuse to let it take over my life and yet somehow I wonder how it CAN'T, and how I can go on without my doctors help and them reassuring me every week of my life? Tonight I am just feeling down about the whole thing.

Yay :)

Things are continuing to go well. I went in this morning for the dentist to adjust my denture, it had one spot that pinched when I opened my mouth wide but its 100% comfy now. I am so happy! The metal that was exposed already looks like it is starting to fill in more. That screw that was showing is mysteriously gone and covered now (already, even the doctor was surprised!). I really do think it was that bulky thing I was wearing in my mouth before, it would make my mouth sore and it was so hard to talk with it in, I think it was rubbing away the skin graft from having it in so long, but I had to wear it to keep my lip from falling back in. After that vestibuloplasty I wasnt taking any chances of having it go right back in the way it was before, so it was kind of a lose lose situation there. My doctor seemed very happy to see it is filling in after only a few days of wearing the new denture. So they are going to call me to schedule my appointment to have the teeth attached to the implants, it is an outpatient surgery done there in the clinic so I get to go home right after, there will be some swelling but nothing like before (I dont think, though I am a sweller).

I am just so excited to get so far, after everything I have been through. I am trying to stay positive. I do still have to have a couple of smaller procedures, really just cosmetic stuff, done in the future but right now I am staying focused on getting the teeth permanently attached! There are so many things I am looking forward to being able to eat again, I swear I'll probably gain 100 pounds in the months after this surgery.

Got teeth?

I did, some new bottom ones. :) Right now it's just a temporary denture but they will actually be attached to my implants later on. I think we are aiming for in a couple more months, it feels like they keep telling me 'a couple more months' but I am pretty sure they mean it this time!

I like it. Cosmetically, there are a few things that bug me but I am going to have to get used to it. First, my chin juts out in my profile. BUT it looks ok from the front so I can ignore that. Second, on either side of my mouth its a bit sunken in (because the chin comes out so far). There's not much they can do about that now. Also, its almost impossible to smile, and when I do- the bottom teeth dont show! Argh, after all this time waiting for teeth and they dont even show when I smile! I hate that because the only way I can smile now is with my mouth partially or all the way closed. That is because I lost SO much soft tissue and gum on the bottom that they can only build it up so far, so it is lower than where my normal teeth would come up to (if that makes any sense). It also makes it a little difficult to close my mouth all the way naturally. I am going to mention that to the doctor on Monday when I see him again. He wanted me to wear it for a bit before they made any adjustments to it. I am sad that I have lost my old smile, but will have to get used to this new one.

Pics!

Teeth- excuse the pimple on my chin, I swear I am almost 30!


One Chris took of me smiling, he thinks I look beautiful:


And the closest I can get to a smile where my teeth are showing:


Talk to you all soon!

Biebrich scarlet

My appointment went well today. I saw the 'big doctor' (Dr. I) and he said that the exposed metal isnt very deep and he thinks that it can be closed using this stuff called Biebrich scarlet, or 'scarlet red.' It is a chemical that is wiped onto the area and it is supposed to promote soft tissue growth, and I will have to have it done a few times. So hopefully the area will close itself up. We still have a few months to try to get it to close, even if just a bit more, as they arent planning on uncovering the implants and putting the teeth in until later in October. They want to get the full amount of healing time. Knowing me, this is a good idea, since we dont want to get ahead of ourselves and then have to go back in again and remove the teeth to do some procedure or another. I am not in a rush to get the teeth, I have been without bottom teeth for 3 years now so its really not a huge thing for me. My chin was the biggest thing cosmetically that bothered me, and now that that is fixed I am happy as a clam to be patient for the rest to get done. :)

They tried the prosthetic denture that will eventually become my implants on again today and its set too far back and is also too low. It needs to be built up a bit more for height, so they are going to have to work on it some more. I dont like how far back it sits, I feel like the edges of my mouth sink in because its so far back. The problem is, the implants are placed near the back, so if they go too far forward with the teeth it becomes weaker...imagine a diving board. If someone is standing farther back, the board is not going to move, but as you move farther and farther to the front it starts to get less stable, that is also the same way with the implants. I think it will come out okay in the end though. It was awfully weird seeing teeth down there when I smiled though!

I met a medical student (I think she was a student) who specializes in ameloblastoma today. The first thing she asked me was "Do you have a blog?" I said yes and she said she thought I looked familiar...she has read my blog and said it is well done. She said it was an interesting read, from the patient's perspective of things. So, hello to you Ms. Medical Student reading out there....sorry, I dont remember your name.

*waves.*

Of course, as usual, I will keep you all posted!

An article on ameloblastoma, with pictures

Warning, the pictures in this medical piece are extremely graphic, but are the only pictures I have seen online where it shows what they did to me. The first picture is from the neck being cut open and then basically lifted up while they operate from underneath, then they pull it back down and re-sew it. The second is a picture of the tumor and jawbone that have been removed in one piece, with clean margins (bone untouched by the tumor) on all sides to try to ensure the tumor does not return.

Again, if you are squeamish- best not to read the article. Oh, and it has to be cut and pasted into your browser, for some reason it wont let you click.

http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ija/vol17n1/graft.xml

Maybe no surgery...but I doubt it

Ok, so I was told at my last appointment that I might not have to have surgery to remove the plate. Somehow I doubt this so I am not getting my hopes up, especially because it seems I can feel more metal and see a bit more all the time. I know part of it isnt my imagination, as I have been actually counting the bumps (the plate looks like a bike chain, and I have counted so far 3 bumps and now 3 1/2 of them showing).

The logic makes sense in them saying that if they dont have to do surgery they dont want to. In essence, they are saying why go in and cut inside your mouth and make a big hole in there given my history of infection, when it looks healthy and pink and nice right now. They are thinking of alternative ways to possibly stimulate my own soft tissue growth in the area without operating. I doubt that this will work out, just simply given the fact that they have tried alternative procedures on me before (BMP at $1500 a pop, anyone?) that didnt work out and ended up resulting in surgery anyway, but I guess we'll see.

It would really suck to have another surgery right now, even a small one. I have been working again and I cant tell you how much more "human" I have been feeling lately. It is exhausting (I work nights and then wake up early to take care of my kids while Chris goes to work) yet it is so nice to get out and mingle with other people for some hours per day and just be out. I still worry about people looking at me (the underside on the left is swollen downwards still, so it does look weird from my profile) but I care a little less each day. I have dealt with being far uglier for so long that little imperfections are seeming so trivial right now. Just to feel like I am getting back into everyday life again has really boosted my morale. My relationship is getting stronger too. I think Chris feels that I am feeling better about being in my own skin again and it makes him happier as well. From the beginning he has been so supportive and wonderful, reminding me I am still beautiful but really when you feel hideous it doesnt matter what people tell you, it is something that has to come from inside of you. Being able to be out every day and act like my life is normal (although ameloblastoma never leaves my mind, and I doubt it ever will, ever) has helped me to overcome alot of the anger, loneliness and sadness I have felt over the past few years dealing with my medical issues.

If I was to tell anyone dealing with this what is the best way to overcome what we have gone through I would say the most you can return to 'normal' life, the least you can hide away and act like you are sick and be reclusive, that is the best way to overcome all of this. Life should go on not only for yourself but for your family, for your children. We may never be the same again inside, the worry and fear will never go away and the procedures take so long- but always try to remember there is a light at the end of the tunnel.

Anyway, I go in Friday again to see the head surgeon, Dr. Indresano. I am pretty worried as to what he will say when he sees more of the metal is showing, but I will keep you updated.

Yay for girlfriends!

My friend Emilie was in town for a much needed night of hanging out and chatting. There is nothing quite like getting away from it all with a good friend. Sometimes we forget to be human beings, and allow the medical side to consume us. I am trying more and more to not let that happen. Working has helped too, just getting out 4 or 5 days a week and being around other people helps. I feel so much better these days, even if it is exhausting.

My next appointment is on Monday, I am worried for it, as it has been a few weeks and I always get weird new news when I go. I'll let you know how it goes!

Reaching out

I have been getting numerous emails lately from people who have found my blog and are thanking me for it, as they themselves are dealing with ameloblastoma and dont know where to look. Most are newly diagnosed and looking for answers, some have friends and family who are recently diagnosed and are questioning what exactly it is, and some have dealt with it themselves in some capacity. My heart goes out to everyone who in some way has been touched by this disease and the treatment that seems never ending. I wish we hadnt had to meet on these terms- and yet I am reminded that there is some kind of comfort in comraderie, as horrible as ours may be. I will always be here to answer questions or concerns for you guys so always feel free to contact me. Part of me thinks that I was made to go through this so I can be here to help other people in dealing with their own. There just isnt a lot of information out there on this at all, so if I can be a small beacon of light to even one other person I feel I have done what this blog is intended to do. And, of course, I hope you all have an easier time of your surgeries than I have! :P