Denied, again

Today I received a nice letter from UnitedHealthcare again denying my implant surgery. They stated the usually that is it not covered because ...blah blah blah. I think this will be the 4th letter I send to this company and I am really getting sick of this. I know it's their "job" to save the company money but come on.

On the plus side I have not gotten an infection from the implant surgery. That's a good thing. :)

Giving thanks.

Well, Happy Thanksgiving. This is the time where one should be giving thanks for what you have. I have semi good health. Semi part being amelo but I will talk about that later. I am thankful for my family. My brother and mother who I love to pieces. I am thankful for the support I have from my boyfriend and friends.

But I also reflect on what I have lost. 4 years ago almost to this day, I lost my father to a heart attack. I watched it happen right in front of me and it truly affected me emotionally. So it makes it hard around this time a year to be truly happy. I miss him.

I also think of amelo. It will be 2 years next month since my first surgery. I am thankful it was not cancer. I am thankful for the outcome of the surgery. I am REALLY thankful that it has not come back. But I am also tired. Tired of the doctor appointments. Tired of the CT Scans, X-Rays and MRIs. Tired of traveling 6 hours to Baltimore and back.


It is a mixed bag. But most of the human race has this in some form or another. I know it could always be worse. And for that I am truly thankful for what I have.

CT- Scan

In January 2009 I went to see my doctor at his private practice. He had this machine that Hopkins did not have. It basically captures a panoramic CT-Scan image. I just recently acquired a copy and wanted to show this. The images were done before they removed the plate.










Here you can see a scan of what my left side of my jaw looks like. You can also see the nail placed into my chin to hold the end of the plate in place.










Here you see the right side of my jaw. You can clearly see the plate and the fibula bone underneath it. It's amazing how small it is compared to my normal side.

Yes, antibiotics taste like crap

I got to the doctors office with 15 minutes to spare. Only a few people were waiting so I had my choice of seats. There was this one older guy sitting behind me, dead to the world. He was fast asleep and snoring-up the office. It was funny at first but it started to get on my nerves. I wanted to poke him in the leg and say, "wake up." Thankfully, he did so on his own. To tell you the truth I think he woke himself up.


I got called back to the operating room at 1pm on the dot. Very efficient. The assistant asked if I was there for just a routine check up. "Errrr....Nooooo. I am getting an implant done." I got scared for a second. Was there a mix up? But to my relief the doctor came in and asked if I was ready to get the implants done. Implants, as in plural. I hoped that they would be able to replace both implants that were taken out but I was not sure if that was possible.

Before the doctor got started with the procedure he handed me a tray with two pills on it. Antibiotics. What! He wanted me to take them to ward off getting an infection. Guess he knows my track record since I get an infection at a drop of a hat. The worst part about this was I can not swallow pills. I had to... chew them. GROSS! No, the doctor did not tell me to chew them, I can not swallow pills. It's a mental thing I mentioned on a prior posting. Believe me, they taste worse then you can imagine. I almost gagged from it. I had to rinse my mouth out with mouthwash to get rid of that taste.

The doctor came back and went over with me what he was going to do. I was ready as I was going to be. So I leaned back against the seat. He, in turn, brought out a big needle.

Here we go.

An anxiety attack... Really?

Today is the day. Today I get my implants replaced. Mom and I stopped by Starbucks to get my coffee fix, (Chai Latte, yum.) We left early and traffic was good so we hit the White Marsh Mall for a little shopping. We usually do this afterwards but I was not sure how I would feel after the procedure.


When we got to the hospital we had a little time on our hands so we headed for the gift shop. On the way we went passed the flower store. They had their Christmas decorations up already. What caught me off guard was not the decorations being up so soon. (It was, I mean come on, it's not even Thanksgiving yet.) It was the fact that I had little anxiety attack.

On December 24th, 2007 I had my second surgery, which to be honest was not a pleasant one. My mom got me a little Christmas tree and some flowers then too. Seeing the flower decorations today brought it all back like I was living that day all over again. I blogged about it and you can read it here. I was taken back as I have been back to this shop countless of other times, even around this time of year. Never an issue. Guess it's funny how the mind works.

Mom did not see my face and I am glad for it. I am sure I looked like a deer caught in the headlights of a car. The sudden surge of fear only lasted for about 5 seconds. Then... it was over.

Weird.

Almost Time

Two days and counting. I am starting to get a little excited as I always do before surgery even though this is minor in comparison to my past ones. So it should be a walk in the park. Should be.


My appointment is for 1pm, so I will leave my home in the morning. Traffic is hit or miss. But I always give myself some cushion, time wise. You just never know, especially in the Baltimore area.


I called the doctors office today to go over what I may need for my upcoming procedure. As expected I got their voice mail. I did leave a message and was pleased to hear back from them in a reasonable amount of time. Usually they take days. I was told that for the procedure I would not have to be put under. They would give me local anesthesia. So I could “drive home” afterward. Personally I don’t know how I can drive home after something like this since my drive is about 3 hours but I guess time will tell. Mom is coming with me so that will be a comfort. Well, to a point as she does not drive at night.


Guess there is always the Marriott Waterfront Hotel. Really, it’s a nice hotel and I highly recommend it.

In one week, back to Hopkins

Next Thursday I will go back to Hopkins to replace the one implant that they took out in the last surgery. I finally feel that things are moving forward, which is good. But for some odd reason, I feel worried.


I think I feel this way as it has been such a crazy process. From the infections, to the implants being taken out, to the doctor leaving, every step forward seems to be a few steps back. I hope nothing will go wrong and I am thinking positive, but …


The good thing is that I did find Dr. S, (HAZZAH), who will do my prosthetics. He recommended going back to Hopkins to get the implant replacement done and then we would take it from there. I will have to wait 2 -3 months for my mouth to heal and then we can proceed with putting “caps” on top of the implants. Then I would have to wait another few months before they can do the cast of my mouth and then….. TEETH! So, I will not get my teeth for Christmas as I hoped but if all goes well I will get my teeth for July.


Whether the insurance company will pay for it I have no idea, but I will deal with that when it comes up. Thankfully, to date they have paid everything. I could not visualize going through this process without some sort of insurance to help. I really feel for the people who do not have insurance. I am luck in the respect.


So here is hoping all goes according to plan. Fingers crossed.

I did it!

Today, I ran my first 5k. I ran it at 35.07. Not bad for a girl with one fibula. This is such an accomplishment for me. A year and a half ago I could not walk. I was very happy that my ankle did not hurt. I was worried about that as I would get pain every now and then. Guess my mind was focusing on the race and just finishing it. At least that is what I told myself. So for anyone who had a Fibular Free Flap Reconstruction and think that they will never be able to run again (or in my case, start) rest assured you can. It just takes time.


I don't know if I will continue to run races, but I must say after I was, I felt great. Tired, but great. At the very least I can run two miles to keep up the endurance. Maybe I will try biking next.

Baltimore and hope

I just had my 6 month check-up with my doctors at Hopkins. I meet with Dr B who did the reconstruction part. He was very pleased to see me, mainly because I had no issues. He did notice that my scar was still red. He said to give it 6 months and after that if it is still red he can do microdermabrasion treatment on it. My insurance will not pay of course. (What else is new)

He also said that my right side is a little thinner then my left. This he can correct with three different treatments.

1> fat injections from my hips or thighs. This would be permanent and note very invasive.
2> Fillers. Also non invasive but not permanent. I would have to get it done every year.
3> Surgery.

Well you know which one I will take. Number 1 please. He states I can have this done at any time and do not have to wait. I think I will do ahead with it sometime next year after the holidays.

I later meet Dr K, who did an examination. He was not too please with scar that was left from my last surgery but said other then that thins seem fine. I will have to see him again in 6 months as a follow up.


So all seems to be going well. Have my little happy face on now.

I am going to run a 5K

There it is. The girl with only one fibula bone will run her very first 5k in September. I never thought I would do this, EVER. Even before the surgery I thought people were crazy to do this. Walking I could handle, but running?

For the last 2 years I have been working with a trainer at my local gym just to build up strength and be more active and fit. Shame it had to take me getting amelo to wake up to the importance of getting more active. I told my trainer when I started that my goal was to run well enough that I could get away from a robber. My leg was very weak after the surgery where I could not run 5 steps let alone 5k. But now thankfully the strength in my left leg is much better. It's still not 100% nor do I think it will ever be. At least I can run 3 miles, not on a track but on a treadmill. It's a little different when you are out in the open.

Tomorrow I will be heading out to the 5k course and run it for the first time for practice. I don't expect to finish the run in any record time. I am sure it will take me 1 hour or more. But I will take my time and at least finish it. To me after all of this, that will be such a great accomplishment. I just hope I don't pass out. :)

Cursed!

I firmly believe that I am cursed. A lot of negative stuff has been happening over the last few weeks. About 3 weeks ago I started to feel light headed, nauseous and ill. After going to the doctor she diagnoses me with Vertigo. (BS). I am sorry but I know my body and that is not it. A week later I almost passed out at work. I was taken to the ER, who also said I had Vertigo. (Again, BS). Long story short I have to make am appointment with a neurologist. But I wonder if this is related to the graft? Could it be failing? Perhaps I am worrying about nothing but I just can not help it. It’s always in the back of my mind.

The 2nd is not really related to amelo but it goes along with the curse feeling. I was taking a glass cup out of the kitchen cabinet when the glass next to it fell off the shelf. It crashed onto the kitchen counter, where I had other glass cups and shattered. A giant piece of glass bounced off the counter and landed right on my barefoot. Needless to say there was lots of blood and another trip to the ER. Hour later and 6 stitches I was home. UGH


The 3rd is a direct link to my recovery of amelo. I had an appointment next week to see Dr Sinada at Hopkins for my implants surgery. But when I called to reschedule I found out he is gone. WHAT? I was told that he left about 3 weeks ago. Why was I not informed? I mean I would have traveled 3 hours to see him. When were they going to tell me, when I got there? I was mad. I understand people do not stay in one job forever, but still. Now I have to start over. That is what frustrates me more. Dr S knew everything about me. He has been with me since day one of this whole process. It's just draining. Plus I will miss him.

Anything else the universe can throw at me?

Support

Life can be daunting at times. It can get especially disheartening when you deal with a disease such as amelo. You can feel so alone. Friends and family do not know what you go through. Not really. They will not know (and I hope never) what it is like to have ½ your jaw taken out or part of your fibula or hip bone gone. The worry that you might be deformed (depressing I know). But what they can do is offer support. A shoulder, an ear. They can tell you to stop your complaining when you go off the deep end for something so stupid. (Thanks bro!)


But what if you don’t have that support system… I recently heard a story and I really hope it was exaggerated. This woman, we will call her Mary, was just diagnosed with cancer. Now instead of her friends being there for her, they abandoned her. She took it as they did not know how to deal with her having cancer. But regardless, you do not abandon a friend in need. Especially one going through something so serious. Lucky she found some support in a fellow cancer survivor. Bless her.

So I say to all my true friends out there, thank you for being there for me. To the rest? Go Frak off!

Insurance Issues

Insurance companies are such a pain in the butt. Period. In 2007, the very first surgery, my health care provider denied payment on part of my surgery. The reconstruction part. They sighted that they only pay for jaw surgery due to cancer or acute traumatic event. Well having a tumor the size of an iPod nano aggressively growing in your jaw and eating away the bone is traumatic. The invoice... $4,500 dollars. Regardless, I had the doctor write a letter of necessity and I filed an appeal. I was pleased with the out come as the insurance company decided to pay. GOOD

Fast forward to November 2008. 3rd surgery to remove infection and place the implants and continue with reconstruction surgery. My insurance came back and denied that too, sighting the same thing. The bill... almost $10,000. After yet another letter and an appeal I got the happy news that they would pay. Thank you!

Now after two weeks from getting that letter, I got a summery of charges to date stating that I owe that same amount they just said they would pay!! WHAT? Either the left hand does not know what the right hand is doing or they changed their minds. I figured if they did change their minds I would get another letter stating such.

Surgery is so stressful. This last 2 years have been crazy. Now I have to battle it out with the insurance company. UGH! I can not say I was not warned. Over at the Yahoo! Support Group I would hear stories about such things. How they have to keep appealing and "fighting the system". It's just not fair.

Snow White vs Evil Queen

Sometimes I feel like I am bipolar. There are days where I am fine with what I have. I can live my life in peace with amelo. Its like, I look into a mirror and say, wow I look good for what I been through. Great jobs Docs!




Then there are days where I want to crawl into bed and go to sleep, praying when I wake up this will all be a nightmare and I just have dreamed this past year and 1/2. I look and say OMG who is this person? Scar on my neck and leg. Missing 4 teeth. Ugly smile. I look like Frankenstein, I look like a witch. I know in reality I don't but it's how I see myself on those very dark days, like today.



I'll get over it.

What about my leg

It’s an odd thing, having Ameloblastoma. In order to fix one health problem you have to almost make another. Well if it was not my leg it would have been my hip. Oh boy. My leg has been bothering me lately. If I take my fingers and place them just above my ankle bone a run it up the fibula (or what is left of it) I can feel where it ends. That is where it hurts. Not massive pain but sore. It comes and goes.

I also notice that when I wear heels, high heels my leg bothers me more. Especially in the back of my ankle. So I have been wearing low heels or flats. Which is sad because they are some really NICE shoes out there. PRADA anyone?

Also my foot does not flex up all the way. I can point down with no problem. It's the point up that hurts. My big toe curls under. So when I walk I have to be conscious of not stepping on my toe. Its not as bad as I am probably making it sound. But its bad enough. I noticed this back last February and I hoped it would be temporary. but it stuck. I have been doing some exercises to help. But so far, it has not.

On my own

Well it’s been almost two months since my surgery. I am very happy as my smile is almost back to where it looks normal and not one sided. That’s the good news. The bad is that I am still dripping all over the place when I drink out of the right hand side. I forgot once and made the mistake of drinking a can of diet coke without a straw. It ends up mostly on my shirt and my sofa. *sigh*

I finished my antibiotics last week. So now I am “on my own”. Meaning, now that I am relying on my own body to heal and with my track record, I will get an infection and die (sarcasm). No, seriously I hope for the best. Numbness right now is about a size of a large half dollar, which is a little larger then before. I wonder if this would be permanent, but I remind myself to give it time. Though I do get distressed if I have food on the right side of my chin and I can not feel it. That and it’s a little embarrassing.

Yesterday I met an angel.

When I was at Johns Hopkins yesterday, I went to see someone who just had surgery for the same thing I have. I met her online at the Yahoo! Support Group. She was still in ICU. I have to say for the kind of operation she went through, she looked good.

As we talked, (as best she could, bless her), I was reminded of my experience after surgery. The worry of what I would look like, what will I be able to do and NOT do. Doubts that I had in getting this operation done. And the fact I was very uncomfortable wearing nothing but that thin hospital gown.

I brought along a little get well package filled with Medera cream, Ensure and a get well card. On the bag I wrong Ameloblastoma Support. I think its good to talk to someone who has been through this same operation. As much as family and friends are there, they just do not understand.

Recovery takes time. To my angel out there in Baltimore, you're not alone.

Back to Hopkins

Today I met with Dr S to make sure I did not get an infection after last weeks mess and to work out a game plan. The good news is that I do not have an infection (HAZZAH!). The top of the implant I see in the back of my new jaw is the cap part. Not the cap that would sit above the gum line. This cap is to make sure no tissue goes into the implant. He confirmed with me that they will be trying to replace the two implants that were taken out in February. (Guess Dr B did not realize he took out two.) Also will be shaving the bone that grew over the implant. All this will be done in June. He just said to keep rising with Peridex to help keep my mouth clean. So here is hoping that I will get teeth for Christmas. :)

If you don't tell me...

As promised, Dr B called me at 7:30 this morning. I informed him of what happened and he did not seem too worried as far as the stitches coming out. He did tell me that Dr S should have called me back. DUH! But he knows my track record of getting an infection all too well. He said that if I wanted to I could put a moist gauge to help cover the opening. He also said he would email or call Dr S to have him call me ASAP. He noted that he thought Dr S was out of town but was not sure if that was a few weeks ago or now. Well, I thought if that was the case then why would the receptionist at either office not tell me this. This I could understand. But all I got was he will be in tomorrow or this afternoon.

No word as of 11am, so I decided to call his Towson office. The receptionist put me right through to him. Guess what? He stated that he was away and just got back on Monday! Really? Well why the heck did his staff not tell me. I would have understood. It would have saved me some aggravation this past week. I told him that. Grrrr

He did not seem too worried about the opening. He said he would see me on Thursday and take a look to make sure there is no infection or swelling. He did say he would put in two implants that did not have to be done in the OR. We of course would talk about this more on Thursday.

Ok, now my anger went from being directed at him to the office staff. That is pretty messed up. If you don't tell me how will I know. Just wait till Thursday.

Why are some people just plain stupid?

Well, the doctor did not call me back. Again. I have gone from being miffed to down right irate. I left two message for the doctor today, one at the hospital and the other at his private practice. Now I have to say the people who answer the phone at the Dentistry and Oral Surgery Department are either very over worked, understaffed or just plain rude. I think its the middle as I see what happens when I wait in the waiting room. But I was told something on the lines that she would try to give him the message or have him call me. Try? Well I will try not to get an infection and die. Now his practice said he was not in till Tuesday. Fine. At least she was very nice and sincere when I called. Rather deal with her then the hospital. Well I had enough by the evening and decided to call the hospital to get the ENT on call. Little did I know I would be crying for 20 minutes after I got off the phone.

My call into the hospital did not go well. The person who I was taking to said there is no ENT for Oral Surgery and I would have to speak to my doctor tomorrow or just got to the ER. Frakkin b. This is not what the sheet of paper I got said. Clearly if I need help to call and ask for the Oral Surgeon on call. She would not hear it. I told her I was frustrated and hung up. I then proceeded to cry for what felt like a million minutes. I don't want to get an infection. I don't want another surgery. Don't they know by now I had enough. I want to be free. Part of me wanted to go and curl up in my bed and cry to sleep. Another part wanted to go right to the fridge and get some beer or vodka. Fuck this. Sorry the language but enough.

I called back and switched my tactics a little. Thankfully I got a different person. I said I wanted the Otolaryngolgy ENT on call. Now I knew they had one of these. The person who was very nice just asked me three questions: Are you a patient? Yes. What is your name? Laura. And what is your phone number? I gave that with no hesitation. She then preceded to transferred me to the ENT Resident on call for Oto. As I was explaining to Dr Masion, I think that was her name, all the stress that I just went through came out. I was crying. Really bad. I apologized but she was sympathetic. She stated to keep trying to reach Dr Sinada but she said she would talk to Dr B, my plastic surgeon and let him know what was happening. He has a clinic on Tuesday and would try to call me. I know he would call because he never failed to before. She said to keep taking my antibiotics and my oral rinse. She did not tell me anything I already did not know, but it was a comfort to speak to her non the less.

I have never had any issues with this hospital before. I hope this would be the last.
But until I get a phone call back... I think I will just curl up and go to sleep.

I am going to get an infection and die

I think someone cursed me. I really do. That or the stars are not aligned in my favor this month. The stitches where they closed up the incision they made inside my mouth have come out. Too early. It’s wide open. I can see the top of one implant and if I am not mistaken, bone. BONE! *sigh* Left a message at my doctors office to make an appointment. Good thing I got some antibiotics and pain killers last week. Of course, with this much of an opening I am sure now I am going to get an infection and die. Hope it’s quick.

Seriously, this just makes me depressed. Why can not I be done with all this? If it was not for the initial infection I got last year I would have been done. DONE.

Happy Monday.

Case of the vanishing implant

I heard back from Dr B, he was the one who removed the titanium plate back in February. He confirmed that he only took out one implant that was loose and was in the path of the fistula. So, that leaves the question. Where is the other implant?

I know I am not the smartest person in the world but I don't believe my eyes are deceived. It looks like 4 screws to me. I left another message with my oral surgeon to call me back ASAP. I need to know what happened. Plus I am still a little miffed about Tuesday.


Thank God its Friday!

Hey! Where is the other implant?

Today was a big day for me. I went back down to Johns Hopkins to see my doctors for follow up. The first appointment was with Dr B, my plastic surgeon. We have a running joke between each other. He never knows what to expect when he opens the door to the patients waiting room. (Will I swell? Will I be fine?) So, he opens the door very slowly and peeks his head in. It always makes me laugh. I always tell him that I love seeing him but not this much. Anyway, after the examination he gave me a clean bill of health. No issues to report inside my mouth. I did bring up again the lack of lip movement on the right. It has gotten a little better over the past 1 1/2 months. He stated that was a good sign. Give it time. He also brought up again that if I am not happy with how I look cosmetically that he can help me with that. But that would be in the future. Now I don't have to see him for another 6 months. HUZZAH!


I then went to see Dr R. He is on the oral surgeon team. I normally see Dr S. but he was not in that day. Today, in what I thought was just a follow up appointment turned out to be much more. He informed me that he would be making an incision over the implant fixture or screw that were implanted back in November and place the dental abutment or studs over them. This would make me one step closer to getting my new teeth. Now I knew I lost one implant when Dr B took out the titanium plate last month. Fine, no problem as I have three left. Or so I thought. After the Doctor put in the first stud, he had a hard time finding the other two. He had me take a panoramic x-ray. (Why did he not do this before hand was beyond me.) Upon examination of the x-ray he made two very interesting discoveries. The first was that bone had grown over one of my implants. Bone? This implant was the closest to my original jaw. Guess my bone did not like that there was a whole in new bone and decided to cover it up? Crazy, but that was the easy part. The hard part was the second discover. There was no other implant. WHAT?



As you can see from the x-ray there are only two implants. One to the left you can see the stud over the implant screw. To the right there is the screw that is covered with what looks to be bone. No other implant screw. Where did the other one go? Could Dr B not know he took out two screws or did it just slip his mind? Regardless, I can not get my implants done. Doctor said that he would need to place another implant screw in. So that would require more oral surgery. Great, it would be the 5th in over a year. He stitches me up taking out the stud that was placed in the back screw, worrying that it would get an infection, good idea with my track record. He stitched me up and gave me pain killers and antibiotics. So all this was for nothing. Again I ask myself why did you not take the stupid x-ray before hand. Whatever.

I will be talking to Dr S, my regular doctor tomorrow to go over this. I need to understand what happened. So, as you can understand, I was very pissed. Not to forget I was now in pain. So help me if I get an infection.

One month mark

Today it will be one month since I had my surgery. No swelling. Which is always good. However, I noticed a small red "bubble" in the back of my right jaw. I placed a q-tip gently on top of it and pressed down. I noticed that there was a little blood on it. Not a lot where I would be calling the ENT at Hopkins, but enough to make sure I tell my doctor in two weeks about it. My luck is that I am getting another infection. GREAT

Also there had been no improvement with the right side of my lip. It is still paralyzed. Feel like a stoke victim. I know the doctor said give it about 3 months but still. I don't like the way it looks when I smile. I don't like the way my lip moves, or lack of movement, when I talk. And I really don't like what happens when I try to drink anything. Lets just say I get more on my shirt then in my mouth. I have to either hold the right side of my mouth closed when I drink to prevent leaking or drink through a straw. God I hopes this gets better.

Scar treatment is still on going. Its only been a week so I am not really thinking about it too much. Mederma is making so much money on me. All these scar creams are not cheap.

Others dealing with Amelo

For the past year and 1/2 that I have been dealing with Amelo I have talked with some wonderful people online. Sadly they too have been dealing with the same thing. I have said before that I am thankful for sites out there that offer support such as the one on Yahoo!. I also think it’s wonderful for those who wish to share their experience dealing with such a disease. But that’s what this and other blogs are there for, help others. Besides, it is good therapy for the writer. Believe me, I need it.

Below on the right hand side I posted links to 5 different blogs. I encourage you to check out their story.

Scar treatment, week one

Today I start my scar treatment. I know in time it will fade but right now it looks like a bright red line drawn right across my neck. Doc said I could use any scar treatment out there. I will start with Mederma with sunscreen and vitamin E.
I am not a fan of the regular Mederma as it itches like heck and gets all flaky. Perhaps a combo of E and the cream will help. Says it takes about 8 weeks to work.

We will see. If all else fails I can always switch to a different product.

Just for Fun

Stupid Amelo

It is hard not to look into the mirror and see the side effects of Amelo. At little over two weeks since my surgery the swelling is minimal now. Only at a side profile can you really tell I am swollen. But what no one can fail to notice is the bright red scar that goes from one side of my neck to the other. Almost looks like someone tried to strangle me with a piano wire. (I watch too much TV). Monday I will start my scar treatment with Mederma or Scarfade, per doctors orders. That said my scar really does not bother me. What does concern me is the weakness of my lower lip, specifically my right side. It does not move. Not like it use too. When I smile its very crooked and one sided. Doctor said give it time. Anytime when you cut around nerves or stretch out the area it take a few months for it to go back to normal. A similar thing happened last time when I first got the reconstruction. It did take 3 months for the lip muscles to resume the normal function. But they are no guarantees that it will come back. That is what scares me.

I know I can not dwell on matters that are out of my control. I can not feel overly sorry for myself. (OK, maybe a little). But I find myself back in the same position I was when I wrote about it on Friday, January 4, 2008 from my first operation. I would smile, but I can't.

Stupid Amelo!

The one week mark

Things seems to be doing good. Swelling is still there but I no longer look like a one sided 1/2 inflated balloon. I am approaching the "crucial" time where the last two surgery's the infection reared its ugly head. So time will tell.



I think what may be helping me is the liquid antibiotics I am taking. Last time they (the hospital) gave me pills which I had a hard time taking. I would have to crush them up and take them with applesauce or yogurt. Let me tell you no matter what you put it in they taste terrible. BLAH.

Tomorrow I head back to Hopkins to have my stitches in my neck taken out. The stitches in my mouth will degrade over time. I am still not sure if I will use Mederma or ScarFade. The one things I like is that Mederma has cream with SPF 30. Sun screen is key in the fading of scars as with sun exposure you risk that scar turning red or staying red. At least so I am told.

Rare Disease Day 2009

Just a reminder that Rare Disease Day is one week away.

Its over... I hope

I am home. The last few days seems to have come and gone so quickly. I was only in the hospital for a few days. I am not really in too much pain. Just very sore. The doctor gave me a liquid antibiotic so I can take it much better then a pill. I can not chew anything hard. A soft or liquid diet is all I can take right now. So mashed potatoes and oatmeal are my friends. The good side is so is ice cream. Yum.

I got into the hospital at 5:30am to prep for the surgery. I did manage to take some photos of before my surgery so I can compare afterwords.

You can really see my scar and the swelling that I had left.


They took me into the operating room while I was awake. I really don't know if this is a good thing or bad. Part of me never wants to see the operating table again. The other parts thinks its good to know what my surroundings will be. Guess the jury is still out on that one. But I did not have to worry too long as soon as they put me on the table out I was out in a matter of seconds. They did not even warn me. The next thing I knew I was waking up in IC Unit.


When I was wake enough the nurse showed me and my mom the plate. So this is it. I must say it is different from what I imagined. I thought it would be smaller or more flexible. Its very hard. Can not really make jewelry out of it like I thought. (HAHA) The color seems off too. I thought it was to be silver. Looks more like gold. Anyway. The doctor said that he tried to cut the plate out but he could not. Also that he had to take one of my implant studs out. It had gotten lose where my fistula developed and had to come out. He was not sure the exact placement of the implant but I would address that would Dr Sinada next week. I don't think I can recover that implant. I just hope it will not effect me getting my new teeth.

I really did not feel like doing anything. I did bring with me books and games to help the time go by. But all I wanted to do was sleep. Just sleep. I took a photo of my chin after surgery. I don't recommend anyone looking at it that can not stand the sight of blood. So be warned.




As usually my face swelled up like a big balloon. I am surprised that the side did not pop open. The above photo does not show it as the one below will, along with my new scar. I have to put bacterial ointment on it every day for about a week. No big deal. The doctor will take out the stitches next week. So I will need to stock up on Mederma or Scar Fade. But right now all I want to do is sleep. At least I am home.

It is Almost Time

Just a quick thought. In 4 days I will be at the hospital having my 4th surgery and hopefully my last. The happiness that I felt before is now fixed with trepidation. I am glad that I am having this surgery but I fear for the outcome. What it does not work? What if it makes things worse? What if...

Ameloblastoma Awareness Day

A lot of causes out there have their own day. Hey some even have their own Month. Why not Amelo? So heads up!! I hereby dub March 20th as Ameloblastoma Awareness Day. I picked this day for two reasons:

1. Its the first day of spring. Spring is a time of rebirth, renewal and awareness.

2. It was the first day that popped into my brain. Go figure.

Since this is such a rare disorder its good to make the world aware of it in some fashion or another. That is the great thing about support groups like the one I found on Yahoo! and Facebook. Its scary. I am not going to lie. It is why I and many others have made blogs about our experience. That and it's good for our sanity. Through education, research, advocacy, and support activities perhaps one day we can understand this disease or even stop it from ever happening.

Hopefully a very special someone will one day come along and starts a nice big foundation for Amelo. Until then, its up to us to spread knowledge and awareness. Tell your friends if they ever heard of it. Ask your families if they ever knew anyone with it. Google it. Just be aware.

UPDATE:

I just found out through Facebook that there is a campain for Febuary 28th Annual Rare Disease Day. So since there is already a campaign... so that is the new Day.

February 28th Rare Disease Day

This is from NORD

Rare Disease Day Partners

List of Partners to date

The Office of Rare Diseases (ORD) at the National Institutes of Health (NIH) and the Office of Orphan Products Development (OOPD) at the U.S. Food and Drug Administration (FDA) have signed on as Rare Disease Day Partners.

In addition, all organizations, societies, and companies working with rare diseases and/or orphan products are invited to become Rare Disease Day Partners. (For information on this, write to rarediseaseday@rarediseases.org). Partners are also being asked to:

* Write to their state governors requesting that February 28, 2009, be designated Rare Disease Day in their state. Click here to download a sample letter and sample resolution.

* Post the Rare Disease Day logo on their websites and in their publications.

* Make their members aware of Rare Disease Day. Sample Newsletter Story

* Encourage media coverage of Rare Disease Day by suggesting stories to their media contacts for that day or the week leading up to it. (NORD will provide a press kit soon to all partners that can be personalized and used as needed.)

* Share information about any activities their group may sponsor related to Rare Disease Day so that other organizations can benefit from reading about what they are doing.

* Share human interest stories about individuals and families affected by rare diseases to rarediseaseday@rarediseases.org, for possible posting on this website or for possible use by reporters covering Rare Disease Day.

* Nominate researchers to a Rare Disease Hall of Fame to be published on the website. This can be done by sending a brief (one page or less) summary of the what the researcher is doing, why it is important, and any results to date that have improved the lives of people with rare diseases. If possible, nominations should include a photo of the researcher.

Is it weird that I am happy?

Surgery is 20 days away and I am happy about it. Not that getting my neck cut from ear to ear and then have my skin pulled over my chin so the doctor can take the titanium plate out is fun (gross I know). But I hope that with this operation that I will finally be done with the major surgeries.

I feel that over the last two years my life has been on hold in some way. Almost to the point where my highlight was waiting till the next doctor appointment (there has been at least 30), the next CAT scan (7) or the next surgery (3 to date). Well that’s not really true as I took some great trips over the last two years; Los Angeles, San Diego, Disney World, Salem, Mass to name a few. But I practically live at Johns Hopkins.

Speaking of Johns Hopkins I found an interesting fact about the name Johns. Turned out his great-grandmother maiden name was Johns. That is where he got the s in Johns. That is for all you history buffs out there.

Anyway, I will find out the week after my surgery when I meet with my oral surgeon what the time frame will be to get my implants done. So I may one day soon finally be able to eat on the right side of my jaw. Once that is done I will feel whole again. Well as whole as one can get with ½ my jaw gone and my fibula chopped off and moved to a different place... (Too dramatic?)

Two Words

I think that says it all.

Meeting the Big Three

Today has been a long day. Been up since 4am. That is the one bad thing about having doctors that are 3 hours away. At least there was no traffic and I am lucky my appointment was not next week during the inauguration.

My first appointment was with Dr B. and I brought up the concern of my swelling moving down to the bottom of my chin. He stated that the infection is looking for a way out and since the leaking in my mouth has stopped its trying for another route. He put me on Amox for 2 weeks to combat the swelling. I am really getting sick of taking all these antibiotics. Sometimes I just wish they stuck an IV to my arm and give me the drugs that way. It would be easier for me.

He also gave me the worst possible news that I could get. He has to cut into my neck again. All the way thru. He wanted originally to cut inside my mouth to take out the plate. But upon further examination and where the plate is attached too, he states he will have no choice but to cut along the same line as the original surgery and pull my face back and take out the plate. I almost feel like I am starting over again. He said he will not be effecting nerves but I don't know. Its a shame that he did the microdermabrasion on my scar last November as that was a waste now he has to cut back in. Maybe I need more then 3 weeks off of work.

I think at this time I zoned out. Good thing my mom was there but sometimes I wish I would bring a voice recorder to record everything that was said that way I could remember. I zone out sometimes. Its so surreal, Amelo.

I few hours later I meet Dr K. I have not seen him since April when I first swelled up. I gave him the run down of what has happening to me over the last 8 months. He took a look at my last Cat Scan that was done in November. I did not see any evidence of the tumor coming back as that was one of my fears. Just the swelling that occurred under my chin. He did put in his little Blackberry the date of my next surgery. He wants to take a look and see what I look like inside my jaw. If everything is fine then I don't need to see him for another 6 months.

He did mention a type of therapy used many for people who have radiation or burns called Hyperbaric Oxygen (HBO) Therapy. From what I understood and looked up later when I got home was that:

HBO is a non-invasive, safe, and painless treatment for wound care. During the therapy session, patients lie down in a specially designed glass chamber and comfortably breathe 100 percent oxygen. This, in turn, provides increased oxygen to damaged tissue.

He said this is usually done 5 days a week for a few weeks. Maybe this is something to look into.


After lunch my next appointment was with Dr Sinada. You should see the glee on this mans face when I told him Dr B would take the metal plate out. I know he was worried that the infection from the plate would hurt the chances of the implants taking. He said that if things go well he will be there for the surgery to expose my implants or metal studs that are inside my month. That would make me one step closer to getting my permanent teeth. HAZZAH! I was just worried that it would interfere with what Dr B. would do. He said it should not. But he would talk to Dr B and get some sort of game plan going.

He also wanted me to do a Dental Cat Scan. 3-D imagining instead of a normal dental X-Ray. But Johns Hopkins does not have that machine in the hospital. But his personal practice does. So off I went to Towson to get it done. I almost got lost on the way. So that was no fun. Good thing I went home after this. Its been a long day.

The infection is spreading. Again

It’s a good thing that I am meeting my doctors this week because I don’t think I would have been able to hold off for much longer. It seems that my infection has decided to spread, again. I honestly think the only reason it took this long is that I am able to drain a little of it myself. Otherwise I would have 3 chins by now instead of only a chin and ½. My luck they will want me to get another Cat Scan. That would be my 8th in a little over a year.

Good thing its winter as I can hide the swelling by wearing nice thick scarves. In reality it’s not that bad but I do get a little self-conscious about it. But I do get to go out and buy pretty scarves. I am developing quite a nice collection.

33 days till surgery

I have my date

I finally got hold of the secretary for my doctor at Hopkins. My next surgery, and hopefully my last, will be on Monday, February 16th. He will be taking the plate out and closing up the fistula that developed in my mouth. I wish he did this back in November but there is no sense in looking at the past. I guess. I also made sure that the secretary knows that I will be admitted at the hospital for a few days for observation. My track record and all…

You can not imagine the relief that I feel right now. This will be all over. I hope. No more surgeries. No more swelling. I will still have to get my implants (3 or 4) put in but that will be the normal part.

I have scheduled a meeting with every single doctor I have every dealt with at Hopkins for next week. I just want to make sure there is no possibility that my body is rejecting my fibula or if the tumor is coming back. That’s all I need.

I will find out more later.