Support Groups

As you can tell I don't blog anymore about my experience.  I do however encourage anyone who has been diagnosed with Ameloblastoma to head over to Facebook. There are some great support groups that can be found there with members from all over the world.  Each journey is unique  but we all have stories to tell.  We are a community who supports one another.  It may be hard at first but please know that you are not alone.

-Stay safe. 

Creating new teeth

Today I just wanted to post a few photos of the implant process that I went through.  You will see various photos from the impression that they took of my jaw, up to the actually new teeth, or bridge themselves.

What you see above is an  X-ray with 4 implants.  One, however could not be used.

In this impression of my mouth, you can see the top part of the implants or abutment.

Here is the rawest form of the bridge itself.

The bridge will be placed on top of the abutment.

The final product. It is ready to be cemented into my new jaw.

I have had the new teeth for about 2 1/2 years.  It is different eating on that side of my jaw but I have gotten used to it.  I am just glad to have a full set of teeth. 

Follow up at Hopkins

Recently I had my follow up with my doctor at Johns Hopkins.  He reviewed my Cat Scan and he stated that everything seems to be normal.  It was a little hard to tell due to the fact of the metal reflection from my implants in the surrounding area. He also asked if  there was any issues with my jaw and thankfully I responded no.

He asked about my leg, in which I informed him my foot was giving me issues and two of my toes curled in and my flexibility was shortened on that foot.  He asked if I felt that was related to the surgery they did back in 2007.  I told him yes I did due to the fact I developed a mallet toe soon after the surgery. I also had a nerve test done about three to four months after my original surgery that showed some form of muscle trauma. He said it was amazing how well things work.  They have to go thru and between the muscle to get the bone and they do take out  some of the muscle.  He has had people go back after surgery perfectly fine, playing soccer  and such but what he does not know is the results 10 to  20 years down the line, especially in young people active people. That is why he always ask patients about their leg who had the fibular free flap reconstruction.  I told him there is  a change from before the surgery and then after but on the big scale of things it is tolerable.

I did show him I still had this bump on the side,   (see prior post on Thursday, February 25, 2010).  He thought it might be soft tissue  or part of my bone, but he did not seem too worried about it, though this was different from what he told me back in 2010. He was stating the most important thing is that the ameloblastoma does not come back. 

Case in point, he had two cases in South Africa where the amelo came back due to insufficient surgeries. And unfortunately it spread to the upper mandible and up to the  jaw joint in front of the ear and into the month.  They had  to take the whole rest of the bone away .  And they do not try to do too many reconstruction as its not really possible there.  So people do OK with basically no jaw bone. They have to eat  soft food only.  I am thankful I live in a country where reconstruction is possible.

He did say my scar is a little red then he liked but that is my fault for not following up on my mederma or  vitamin E.  But to me the scar is a war wound and besides scars are sexy.

He stated that at this point the question is how long do we keep watching the area and  how long do we continue with the scans? There is no book or paper to tell that. But based on the time that has past it makes one hopeful  that my ameloblastoma will not come back.  Perhaps they could just do a panoramic x-ray instead of  a Cat Scans? That is the question at hand. They don't know why people develop ameloblastoma and so there is no   preventive measurement one can take.

So we left it with maybe an x-ray rather than a Cat Scan in about 2-3 years.

My first half marathon.

Well I did it! I ran my first half marathon.  Overall I had a wonderful time. The knee braces helped, even on leg that had the fibula removed. Wish I could say the same for my foot.

The Gift of Life, Lazarex Cancer Foundation

Please check out this short film about the Lazarex Cancer Foundation mission to help people no matter of their age or types of cancer.

Disney Halloween 5K

This weekend I went down to Disney World and participated in the WDW Wine and Dine Family 5k. It was a lot of fun. It was held at the Animal Kingdom park. The same park that I did my 5k race in May. This was all part of my continuing training to get ready for my 1/2 marathon in January. In the spirit of Halloween I did dress up as Minnie Mouse. My race time was ok, coming in at 39:46, about a 12:35 minute mile.


I also had the opportunity to see first hand the Wine and Dine 1/2 marathon event later that evening around EPCOT. Depending on how the Tinker Bell 1/2 marathon goes, I might be running this 1/2 marathon next year. The race did not start till 10:00 pm and since I had to be up at 4am that day for my 5k, I was exhausted. I was watching from about mile marker 12, so the runners only had a little over a mile to go. Some runners were dress up in costume. I think the highlight for me was to see a runner dressed as a giant grape. How he ran in it, I will never know.

You Go Grape!

Hey, anyone seen my fibula?

Just a quick post today. I have seen countless photos of my jaw over the last few years but this is my first post surgery photo for my leg. You can see how much of my bone was taken out. It is amazing that the bone that was once in my leg is now in my jaw.

So this is what my leg looks like...

5k Run Today

As part of my ongoing training towards getting ready for my first half marathon, today I participated in a 5K run. It was the Virtua HealthFitness 5K in Voorhees, NJ. The hardest part for me was not so much if I would finish the run. I knew I could as I have been training on this very same course for the last four weeks. For me, it was the time that I would finish.

Using the run-walk method for the last few weeks has allowed me to finish a 3.1 mile course in about 40 minutes and 30 seconds or a 13 minute mile pace. Now that is a wonderful pace for a newbie like me. But when you are surrounded by runners who actually run all out, it can be a little intimidating. Makes me want to run faster and longer than I should for my level. So I have to run with blinders on.


It was fun and I finished at 38:43 or a 12:25 minute pace. A personal best.

Disneyland 1/2 Marathon 2010 Team for Life

I ran across this video from 2010 on the Lazarex Cancer Foundation YouTube page. Although the song was originally written about breast cancer, you can read about it here, it definitely echoes what I went through with ameloblastoma.

As the song asks, why am I running? Why am I trying to push myself? The answer is simple. It gives me strength. No matter what I have been through, no one will EVER take this away from me. I run for me. I run for life.


Please check out the video below. Watching this video touched me but it also energized me. I can not wait till January.

In need of a little pixie dust...

About four years ago I started my journey with ameloblastoma. I met some wonderful people along the path. I will truly never forget the positive mark they have left on me.

Each of us has been touched during our lives by a friend or family member who has bravely battled various diseases whether it be heart disease, diabetes, cancer and yes, ameloblastoma. As a result of my experience battling my own disease, I have decided to give back. I have joined the Lazarex Cancer Foundation’s Team for Life.

As part of that team, I will be running my very first half marathon on January 29, 2012. I will be participating in The Tinker Bell 1/2 Marathon at The Disneyland Resort in Anaheim, California. Yes, my very first and yes I am a little scared. I have done 3 mile races in the past but never a 13.1 race. My goal, besides to cross the finish line, is to raise money and YOU CAN HELP! Your contribution is greatly appreciated. No amount is too small.

Lazarex Cancer Foundation builds a bridge to hope, life and dignity for cancer patients by providing financial assistance to defray the cost associated with patient participation in FDA clinical trials. Additionally, they help patients navigate their clinical trial options and provide community education and outreach services.

The money you donate will help Lazarex achieve their mission of providing resources for cancer patients who have been told they have no other options, but who are not yet done with their journey in life and refuse to give up. Lazarex believes that together we can build a bridge to hope for cancer patients.

Mission: To provide resources for cancer patients who’ve been told they have no other options, but who are not yet done with their journey in life and refuse to give up now.

My fundraising goal is $800 by January 5, 2012. Every dollar helps. Your donation will inspire me and help those who need it most.

Please follow this link to visit my personal web page and help me in my efforts to support Lazarex Cancer Foundation


Also you can visit my FACEBOOK page for this event here.

All donations to Lazarex Cancer Foundation are 100% tax-deductible.
Lazarex Cancer Foundation is a 501 (c) (3) non-profit organization

I am done!

After nearly four years, I can now say I have a full set of teeth. The last phase on my reconstruction is over. I received my bridge. I do have to say it is a weird sensation. I have gotten so used to not having them that I keep forgetting to chew on that side. But when I do, it feels so artificial. Well, lets face it, the teeth are artificial. There is a clear difference between having real teeth and fake ones. I would describe it as if you were wearing a clear retainer or guard that covers the natural teeth and then try to eat with it still in your mouth.

The doctor at Hopkins temporary cemented them in place to make sure I felt comfortable with the new bite. After a three week trial period they were permanently secured in my mouth.

Wish I could 100% enjoy it, but my insurance company, in all it's wisdom, denied to cover the payment of the bridge. I really don't feel like paying 7k so obviously I am fighting it. Again.

So, as of right now, I will only have to make two visits to Hopkins a year. One with my oral surgeon, to make sure my new teeth are still looking good. The other with the Head & Neck Surgeon to make sure my tumor does not come back. This does unfortunately involve yearly CAT Scans.

I can not imagine going through all this again. I don't want too really. I am completely satisfied with my choice in hospitals and I would recommend the staff at Hopkins to anyone. Though at times I do wish the hospital was close to me and that I did not have to drive thru three states to get there.

If you are reading my blog, you or someone you know is going through this "rare" disease. Whether you are in the beginning, middle or end we all have stories to share. I encourage anyone to write a blog or start a journal about this journey. It's good to know you are not alone. Plus, its cheaper than going to a psychiatrist.

I will continue to update my blog, and try to do it more frequently than I have been. I am sorry for that. Life can get in the way of certain things, but really that is no excuse.

My story is not over.

Expedition Everest™Challenge

This past weekend I had the opportunity to run a 5K race. It was held at Disney's Animal Kingdom® Theme Park. The cool thing about this race is that it is not just a normal 5K. They had various obstacles that you had to go through throughout the course. I ended up finishing the race at 36:10. That was just under a 12 minute mile. Not bad for a girl with only one fibula bone.

I did not have to place any support around my ankle thankfully. All the training I have done over the years since my surgery has made it strong. I did, however, had to tape one of my toes that has curled under as a result from my surgery. As I trained for the race my toenail started to become damaged from running on it. I was afraid my nail would fall right off. I am trying to work on stretching my muscles around that area and hope that, over time, it will be more stable.


Once the 5K race was over, the scavenger hunt began. As I said this was no ordinary event. In the scavenger hunt we would receive a card that had a puzzle that needed to be solved before we could move on to the next location. They were 4 cards or clues in total that, once matched up, would give us the answer to the fifth and final card. This card was needed to cross over the finish line for the whole event. (Though, honestly, they never checked our last card).

The great part about this event was that there was no pressure. People of various ages and running backgrounds could participate. You could even walk it if you wanted too. My teammate and I ran into a mother and daughter team early in the day. As we chatted we found out that the mother, who was about 69 years old, ran her first race in February. It was the Disney's Princess Half Marathon Weekend. (Holy Cow) Bless her. I figured if that was not inspiration, I don't know what is. I am proud of what I and my teammate accomplished that night. 1:05:23 for the whole event. Maybe I will train to run a half marathon.



Maybe.

Been a bit.

Sorry I have not posted in a while. Life has it's interesting turns. But that is no excuse not to post. The good news is that I got a clear bill of health from my doctor back in August. I just have to go back in about a year or two for follow-up. I have an appointment to get the final stages of my reconstruction done with my doctor so I should have a full set of teeth soon.

Ameloblastoma "Fast Facts"

After looking up some general information about amelo, I ran across a website called organized wisdom. They listed some facts that I found interesting.

Fast Facts:

* Accounts for 1% of all oral tumors with most patients diagnosed at 30 to 40 years of age.
* Ameloblastomas typically return.
* While malignancy is uncommon, it does occur in some cases.

Would you like one CAT Scan or two?

I honestly can say I have had about 10 CAT Scans in my life. All of which for ameloblastoma. I have never had an issue getting a CAT Scan done, till now. I asked my doctor's secretary a while back if I had to get the scans done at Hopkins or if I could do it local. She did state I could get it done where I live. Good, I thought at that time, that would save me a 3 hour drive. However, now I find out that the place in which I am trying to get the scan done, South Jersey Radiology, can not do the procedures, at least not in one day.

(?????????)

According to SJR, my prescription states two separate scans. Well that is news to me. I usually get one scan by itself and then another with contrast. I got so mad that I just told the person on the phone to cancel my appointment all together. I felt bad as she was being very nice and I was acting like a wounded bitch. Guess I let my anger get away from me. Again. I then directly call Hopkins and left message a with the secretary asking to help get this all straighten out.


If I have too, I would go to Hopkins but I did not understand why two different procedures were ordered this time. I normally just have one. Also SJR was trying to get a hold of the doctor to find out what the exact order was and no one called them back. If I have to take a day off to get this crap done I will be very miffed.


And it’s only 10am.

Johns Hopkins #1 again

U.S. News and World Report came out with their annual Honer Roll of top hospitals. Johns Hopkins, the hospital where I had my surgery, ranked at No. 1. It has been at the top spot for the last 20 years.


Congratulations goes out to my surgical team of Dr Kofi Boahene and Dr Wayne Koch.

You can find read more about the article here.

I just want to heal

Today I received a letter from my insurance company regarding the appeal package I sent last month. I asked them to reconsider payment for the implant surgery I had last November. They denied that request.

The letter stated that this claim was not entitled to an appeal. No explanation, just that fact. It stated they would forward my information to the correct department. WHAT???

I really don't understand insurance companies. The first denial letter stated that I could appeal. But when I go through the appeal process they send a letter stating it's not entitled to be appeal. Talk about a mixed message.

It's a very frustrating position to be in. I just can not seem to heal. Physically, I want to heal and finish with the reconstruction. Emotionally, every letter that I receive rejecting the coverage is heartbreaking. It is almost as if they are rejecting me as a person. As if I do not matter. I know for them it's a business. They want to save money. But where does it end. It's hard to have hope when you have been let down and hurt so many times.

I will call them on Monday to clarify why my request was denied for an appeal. Just another day of my life dealing with amelo. But it's ok. I always keep telling myself it could be worse.

Chin up Laura, chin up.

Closing down shop.

For a little over a year I hosted a support group at Meetup.com. Although we did not have many meetings, I was glad to talk to others dealing with amelo. Communicating through the internet is great, but that never replaces seeing others face to face. Unfortunately, I do not have time to continue on with the group and give it the attention it really deserves. So I have decided to close down shop.

I have other factors in my life that need my full attention and unfortunately something had to give. I urge anyone who is looking for support to check out the Yahoo! support group.

Always remember that even though this is a rare disease, you are not alone.

The Black Hole

Black Hole: An object that is so compact that its gravitational force is strong enough to prevent light or anything else from escaping. (Or keeps messages from being received at the Hopkins Dental Office)

I have officially named that office The Black Hole. The doctor never got my message. Humph! That was what I was told after I called the office back today. If this was the first time that happened I could let it go. But this is the zillionth time. Ok, I am exaggerating but you get my point.


The doctor did call me back right away, thankfully. He did apologize for not receiving my message. I was not sure if he looked at my file so I explained why I was calling. He understood but said that we needed to start the next process in getting my implants exposed. He stated that would resolve the issue of the loose cap causing the irritation and bleeding. **blink**

That's it? That's all I get? I don't know what I was expecting but that sure was not it. But I guess he is right in that I need to get a move on with this. I am just flat out scared. I am scared that my insurance company will not pay. I am scared that this dental office in incompetent. I don't know even if I want to deal with them anymore. But it's easier to deal with them then to start over. Not very logical but it's how I feel.

Guess I have some thinking to do.

Just another week

I called the Hopkins dental office and left a message for Dr. Baer to get back to me. (Yes, I did actuality get someone on the phone.) He was supposed to call me about 2 months ago regarding the issue of bleeding that I have. I said have because it is still bleeding, a little. I get this bubble that comes and goes over the implant that was placed back in November. When it gets full it drips red. Not a lot, but enough for me to be concern. Well, if I was really concern I would have called back about 2 months ago. Guess better late then never.


Also the office manager never got back to me. I want this billing issue taken care of. So, I decided to send an email directly to the customer service department. That seems to be the only way I can get anyone to respond to my requests. If I lived closer I would just walk myself right down there and stand right in front of their desk till I get the answers I needed.


I tried on my prosthetic teeth the other day. They did not fit anymore. I know this would happen due to all the surgery I had. My gum line changed. These fake teeth were given to me back in 2008 but I rarely wear them as it made me talk funny. I did address this to Dr. Sinada at the time and he did say he could adjust them. But I never followed through with it. My error I guess.


As for my leg, I have an idea as to what the issue may be, but I am not 100% sure. I made an appointment with a local doctor to see if my theory pans out. If not, well then I need to see a specialist. It seems lately every time I stretch that leg I get a massive dose of muscle lock. Ouch!


I also called my insurance company to make sure they got my letters of appeal. They did. They stated I would have an answer by July 4th. So, this will be either a happy 4th or a not so happy 4th. Either way, I will going to the boardwalk and treat myself to some cotton candy. Yum.


It’s the little things that make me happy.