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.

It's all about the codes

I called the dental surgeon office again on Wednesday. Asked for the office manager and was, surprise, surprise, transferred to a general voice-mail. I left a message asking for him to resubmit the claim for payment for the surgery that Dr. Christian did last year. I also stated that my insurance company paid the first set of implants back in 2008 and they should pay for these too. If needed check the codes that the other doctor used and change them. Sometime it is all about the coding with these insurance companies.

I also asked for a call back. Been three days and not a word. Guess I will be making a call on Monday. If that does not work it is back to the customer service department at Hopkins.

The boards on the Yahoo! Group site have been exploding with insurance questions of late. Guess others too are having issues. It is really sad and frustrating. If anyone have not seen the movie Sicko by Michael Moore I highly recommend it. Makes you think. Also makes me hate my insurance company...

Never give up, never surrender! - Galaxy Quest

Family

I talked a while ago about having a good support system around you. They will be with you no matter what. Family support and love is key. I lost my father a few years ago and I have never been the same. Death in the family changes you. He never had the chance to see me go through amelo. Sometimes I think that was for the best. But I miss him terribly. There is not a day go by when I don't think of him. I still have my mom and brother. Love them dearly. They have been my sounding board out of life and especially dealing with amelo and my life of late.

I have been having pain in my leg where the fibula was taken out. It's not continuous but it is sharp and lasts a few minutes. I am not sure if it's the muscles or nerves shifting. But regardless it does not feel right. My mouth has also been bleeding a little lately. I am not sure if it is the implant that has a loose cap or something new. I feel at a loss because I do not know how to proceed. My insurance company still have not paid and I don't want to accrue up thousands of dollars without some safety net.

I talked to my brother yesterday in detail about this and other stuff going on in my life. I miss him too. He use to live near me but now he is millions of miles away. God forbid anything ever happens to my mom, I think I would move out there with him. Only issue that would concern me with that is my doctors are all on the east coast. He is on the west coast. I am still dealing with amelo and the insurance crap that goes with it. Lets just say plane tickets would not be cheap. Well, I hope that decision does not have to be made any time soon.

Priority of Life

We all have them. Whether it is taking care of a parent or child. Staying late at work one day to make sure whatever files get done. Walking the dog, feeding the cat. The list could go on and on. But the one priority that is often overlooked by people, including myself, should be our first priority. That is yourself.


I have to figure out me. What I want out of life. You know that big stuff. LOL. Work is ok but I have to be honest with myself. This is not where I want to be and I am at a dead end anyway. I am taking a nutrition class to see if that is possibly a career change I want to make. Jury is still out on that one. I was suppose to do work on it tonight but I am just not in the mood. If I decide at the end of this semester it's not for me, I think I will take another class in the different field. Get my feet wet and go from there. Things need to change and no one is going to do it for me. Sometimes you have to fight and struggle a bit for what you want out of life. That is how you learn and hopefully grow.


Speaking of fighting, I also need to get my insurance to pay for my implants. But I will have to wait and see on that part. This too is also a priority and moving forward with the rest of my reconstruction. It has been too long and I would like to be "whole" for Christmas. I don't think that is too much to ask for.


I go back in August to get another scan to make sure everything it ok. Fingers crossed.

Still Flighting

I sent off yet another letter to my insurance for them to pay for my implants. They send my doctor a denial, again. I really should say I sent them a package. I mailed photos of X-rays and CAT Scans of my jaw and picture of me all swollen. I send them so much information that they will think I am crazy. GOOD. Hope they do so they can pay for me to be whole again.

It has been just over a year since my last surgery. All I have to do is get the implants but I do not want to go to the next step until I get this straight. I hate to say this but if it does not work I might have to get a lawyer. I would rather not as the lawyer might be as much as the implants would cost me. But they want me to give up. I say no way!

On the plus side, I have started taking a nutrition class. Should be fun to learn something again in a class environment.

Trust

Trust: a : assured reliance on the character, ability, strength, or truth of someone or something b : one in which confidence is placed. per Merriam-Webster

To have one's trust is a very powerful gift and one that should not be taken lightly. Once it's lost it is hard to get back. Not impossible, depending on the issue at hand, of course. It is easier to trust close family members like a parent or brother or sister. Heck, they have been with you since you were born.

Friends take time and if you are lucky to have one or two best friends to share your life and trust with, consider yourself blessed. Too many people out there will turn around and habitually reveal personal or sensational facts about others. We all know people like that.

It's very hard to trust a stranger. Let alone, a stranger that will be operating on you. In a way, depending on the operation, you are trusting him or her with your life. That is why, in my humble opinion, if you are going to have an operation, however long or short it may be, get a second opinion. Heck get three or four. I had four listed but only saw three. I did not need to after I went to Hopkins. Sometimes you just have a feeling about someone.

I have no regrets about my choice. For those going through the same thing as myself, I am sorry, it sucks, I know. But look around. Talk to a few doctors. Some may suggest the same procedure, others may pick a completely different path. Two of the three doctors I went to wanted to wire my jaw closed. Two of the three doctors wanted to use a bone graft from my hip instead of my fibula.

Do the research. Get the doctors CV. Talk to past patients if you can. Check out support groups or blogs like mine. But, in the end, its all about trust. Trust in yourself for making the choice and trust in the doctor.

Life

There are things in life that are unavoidable. Paying taxes, death and change. Sometimes change can be the hardest. Dealing with amelo has definitely changed me. But I honestly feel for the better. Yes, I said for the better.

Let me explain.

I always wanted to get in shape. I joined the gym. Never went. I read up on health magazines. Never followed it through. Get the point. It was only after I had my surgery for amelo that it finally kicked in. I needed to get healthy. I needed to get fit.

I went on an ongoing life change. I went to a nutritionist. I seriously hit the gym several times a week. I mentally and physically made a change to get myself healthy. As a result, I lost 40 pounds. More importantly I kept it off. I really felt better about myself. Sometimes it takes something bad to happen in your life for you to realize what is important. Health is import. I am important. I need to take care of me.

But sometimes change can hurt. Especially if the change was a choice. A choice that was made in fear or haste. Quitting a job. Not going to the doctor. Turning your back on something that could possibly be good because you're scared. Get the picture? Sometimes in life no matter how hard you try and hit ctrl z, you cannot undo it.

If I learned anything this past weekend it is to think before you act. You cannot take back yesterday.

But you can learn.

Last straw.

I consider myself a very patient person. But there is only so much I can take. After leaving 3 messages at the Dental Surgery office at Hopkins and not hearing back from anyone, I wrote an e-mail to the patient relations office to make a formal complaint. I was trying to get them to help me with an insurance issue.

I was pleased that I did got a response from the patient relations office within 1 business day of my initial e-mail. I got a phone call back from the Dental Office today.

Lesson of the day: Sometimes it pays to complain.

Where is the snow??

I woke up this morning to no snow. Oh well, at least I got to stay at a nice hotel. After a great breakfast I drove to Hopkins. I met Dr Koch who said everything looked good inside my mouth. I showed him the small bump I had on the side of my jaw. I was not prepared for what he said next.


Pleomorphic Adenoma, also called benign mixed tumor. WHAT THE FRAK?


This was just a possibility as it could also be a cyst and with out a CAT Scan he would not know for sure. He did not want to do a scan due to the fact it was too soon since my last one. He wanted to see me back in August to see if it lump has grown.

Now that I am in a happy mood, (sarcasim) I left the doctors office and started to head back home. Of course now it starts snowing.


I got this from emedicine.medscape.com

Pleomorphic adenomas, commonly called a benign mixed tumor, are histologically composed of 2 subtypes of cells: epithelial and mesenchymal. The tumors are typically well demarcated from the surrounding tissue by a fibrous capsule, which varies both in thickness and completeness.4

Don't know the above means but I do not like it. I really wish they speak english on these medical sites. Someone should start a medial site for dummies.

Guess I will find out in six months.

Let it snow

If it is possible to be anti-snow right now, place me in that category. Here in New Jersey over the last few months it has snowed. ALOT. We usually don't get too much where I live but this winter has been unusual. I don't like driving in weather like that. Lucky me it was suppose to snow the day I headed down to Hopkins. So, I decided to book a room at my favorite hotel the night before at The Marriott Waterfront.

A wonderful doctor

I ran across this article I found in Hopkins Medicine Magazine. In the article, it describes the journey of three doctors and the path they took to work at Hopkins. Dr. Kofi Boahene is listed as one of them. He is the doctor that did the reconstruction on my mandible at Hopkins. I encourage everyone to check out the link above. Below is a little excerpt from the article. If anyone is looking for a great doctor for reconstruction, I can not recommend him highly enough. Also here is a YouTube link with a video interview with Dr Boahene.

Yet soon after arriving in Krasnodar and settling into his studies, the two school officials summoned him to the ambulance. Within an hour, a very confused Boahene found himself in a remote medical facility in a small Soviet town, serving as an unhappy pincushion for a dreary parade of nurses who began a daily ritual of blood drawings.

Despite his continuing bids for an explanation, no one seemed able to communicate in a language he could understand. The seemingly unbounded hours and days grew into an agonizing uncertainty. How long would he remain in this limbo? Was this the end of the road? With no end in sight after that first week, Boahene became increasingly uncooperative, eventually demanding to be sent back to Ghana.

I see red

I woke up this morning and took a look at the inside of my mouth. This has been part of my morning ritual since the swelling occurred over a week ago. I noticed that now a little bubble had popped up right on top where the indentation was from the first drainage. I applied some pressure on it to see if anything was coming out. Let’s just say I was now seeing lots of red.


I am scheduled to see Doctor Koch next week. I think I can hold out till then. I don’t see any yellow stuff which is good. That would be a sure sign of infection. All I can do now is keep the area as clean as possible.


On a side note I am waiting for my insurance to review my appeal letter that I sent a few weeks ago regarding the denial of my last surgery I had for the continuations of reconstructing my jaw. This is the 3rd letter I had to send them. One would think they would get it by now. Guess they are trying to save money. Yeah, well so am I.

Evil Traffic

Of all the days to head 3 hours south, I end up in a snow storm. Well a small one, but still. It took me about 4 hours to get to Hopkins The delay was mainly trying to get on 295 South. Turns out there was an over-turned tractor trailer. When I finally got to my second home (Hopkins) I ended up being 20 minutes late for my appointment. Thankfully they took me. Hopkins has a 15 minute rule. After that, they do not have to take you. It would be up to the doctor’s discretion.



When I saw Dr. Boahene, I gave him a little hug. In away, I feel like we both have been through so much together. Ok, mainly me as I am the one who got me neck sliced open 4 times, but I digress. I showed him my concern regarding the swelling. But he reassured me that it was superficial and that at this point there did not seem to be anything to worry about. He advised me to keep an eye on it and if it gets worse, to let him know. I also showed him the small bump I have on the side of my new mandible. He stated it appears to be a small cyst or lymphoid. It would not be amelo because that develops in the jaw itself. This bump feels to be on the side of the jaw. I asked if I should get a CAT Scan, but he said that would be up to Dr Koch. I see him next week.



I took my time heading back home.

Another one bites the dust

Well, it may have happened again. I noticed over the weekend that the inside of my mouth seemed a little swollen. By the end of the day Sunday I know I had a little infection. Oh boy.


I called Hopkins to make a follow up appointment with Dr Christian since he did the implant surgery. Turns out he is no longer at Hopkins . (WHAT!) I asked the person on the phone who took his files over. I was given the new doctors name but was informed he did not have any appointments till April. (NICE… really nice.) “So, what do I do if I have an emergency?” I asked. In which I was told to call his private practice. (Great customers service guys.) I took his number just in case but in my mind I was done, done with that office. I wanted nothing more to do with them. They have had poor customer service since day one. Now, I must stress I have had no issues with the doctors themselves. It’s the office that is so poorly run. I am confident that if US News and World Report just surveyed Hopkins on that office alone, they would not be anywhere near the top list of Hospitals in America.



So, I did what I normally would do. I contacted Dr. B. I have an appointment tomorrow. Perhaps I will get an answer on the other issue I have on the side of my jaw too. I am sure he will want a CAT Scan with contrast. (On a side note, I do wonder if there is a limit on how many CAT Scans a person can have in their lifetime when enough would be enough. I mean this will be my 8th. I think.)

Not much

I really do not have much to report. I have filed an appeal, my third with my health-care provider. I hope to get a positive response on the payments of my implants. I do have my next appointment scheduled in March with my doctors at Hopkins. I only assume I will have another CAT Scan to make sure "it" did not come back. I tired to remember how many scans I have had to date. 7 or 8. Man, I should be glowing by now.

Elizabeth Haddon 5k

Found my next challenge. It's the Elizabeth Haddon 5k. It takes place on Saturday, May 15 in Haddonfield, NJ. I have been talking to my trainer about the possibility of doing another run. She thought it would be great. Besides, it gives me something to look forward too and challenge myself both physically and emotionally.

I am not the fastest runner out there but if I can beat my last race, even by a minute I will be happy. The area is pretty flat, so there will not be any major hurtles like the last race. (Giant hill from hell.)

It's a good event. According to the site it helps raise money for charities that are committed to research of various childhood illnesses. Check the link above for more information.

Spam not wanted!

It's a shame that one or two people have to ruin it for the rest of us. Anyway, I have noticed that over the last few months some anonymous users were posting links in the comment sections. Sorry this is not an advertisement blog. That is not what the comment section is for and, well they know it.


As a result I am restricting the comment section to registered users only. I hope that will fix the problem. If not, well I will deal with that later.

Happy New Year!!!

Well, just that Happy New Year. LOL