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Here is the first book I was able to get through Interlibrary Loan. It took about a week to get here and cost $10.50 for the shipping (the usual is $2.50), but I’m happy I was able to get it.

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I’m reconstructing this from the notes I took on 31. DEC 2008 and writing this up on 17. JAN 2009. Let the reader be forewarned that some things will be patchy.

Today, I had a meeting scheduled with the doctor who did the biopsy. It ended up being a fairly long meeting, about 2.5 hours as I had a lot of questions. I was supposed to go see him the following week, but I suspect my freaked out email got me scheduled sooner. I wasn’t actually trying to do this; I was trying to understand my disease and treatments and what could go wrong, just in the process I ramped my anxiety way up. I always think about what could go wrong – I’m an engineer, that’s what I do. I thought this was nice that they made time to see me on New Year’s Eve.

First, they did the follow up exam, in the same examination room the biopsy was performed in. The doctor asked me to open my jaw as far as possible and I think I could stretch it about 45mm (this was measured). Then he poked around where the biopsy incision was and said it was healing up nicely and that I was doing a good job keeping it clean. I told him that food and stuff (i.e. brown goo) was getting stuck back there. He gave me a Monoject with a curved tip and told me to use the chlorhexidine mouthwash to rinse it out.

They took some more photos. Some of the outside of my face. I think he took shots of the inside of my mouth as well.

Then they took me aside into the consultation room. There were skulls with various appliances and surgeries performed on them. They even had a real skull, which was kinda cool. Apparently, you can no longer purchase real skulls, due to illegal harvesting of skulls in China and such. Procurers could make quite a bit of money off of this and it led to an ilicit body part trade.

Then we started talking about my treatment.

They typically use platlet rich plasma (PRP). Basically, during surgery, they extract a small amount of blood, about 60cc. Then they centrifuge this down and take the platlets. The platlets are a source of bone morphogenetic protein (BMP) and other factors that help the graft to revascularize and that accelerate healing. This occurs during surgery and takes about 20 minutes.

I mentioned my concerns about spreading ameloblastoma with most of the metastasis being pulmonary (88% according to one paper I read). He said that this was probably due to aspiration. I took this to mean that the people afflicted by this had proliferation into their oral cavity of the ameloblastoma. I later found one article and a full-text article at that (here) which described this. That doesn’t explain why some people have the very, very rare metastasis to kidneys, bladder, etc. But theses are very, very rare – when they happen, it’s an instant research paper pretty much. Perhaps I should not worry them and cross that road if I ever come to it.

He also said that if I wanted to get a second opinion, the place I’d want to go is UT Health Science Center in San Antonio.

He suggested that I keep a Word document with my medical history, so when I had new updates, I could just print it out. I should also get a ring binder and keep my medical history in it.

I wrote down “70s – large ameloblastoma”. I’m not sure what that meant. I think he mentioned that he removed a large ameloblastoma in the 70s and had no recurrence since then. I don’t remember.

He also said that my ameloblastoma had some proliferation into the soft tissue. I asked him how did he know that mine wasn’t more extensive than it was apparently. Like how did he know that it didn’t get into the condyle of my mandible. He said that the cortical bone barrier prevents (or limits) migration into the neck of the condyle.

He said though that he would need to take some of the periosteum and that he’d take ~1-2 mm more than had proliferation through the bone. I asked him how he would know, and he said that when it’s proliferated through the bone, there’s adherance to the periosteum. It “sticks”.

The incision on my neck will be in the “forminal valley”. I don’t think the word is actually “foriminal”, but searching for the correct anatomical term fails me. It’s the skin right next to the jawbone. There will be a large incision here. The lingual nerve, which is on the inside of the jaw will be kept. But the inferior alveolar nerve will be removed, causing permanent numbness on the left side of my face. The surgery does disturb the lingual nerve and can cause numbness in the tongue; however, that numbness isn’t permanent and sensation does come back.

We talked about removing the affected soft tissues, the periosteum. This is called a supra periosteal disection. He will remove areas where the tumor has poked through the bone, like this:

I also wrote down:

   close up on mucosal side
   bone graft from inside of ilium

Arch bars (surgical braces?) will be installed during the surgery by tieing the braces to each of my teeth with fine wire. My jaw would be wired shut to control my bite for 6 weeks.

A long bone plate would be installed to hold the graft in place, like this:

And then blood will be taken, centrifuge out platlets, put back in jaw as PRP.

The whole surgery will take 4-5 hours. I asked if there would be a drain on my neck. I think he said that it probably wouldn’t be needed, but I wrote down “probably not possible”.

I asked him how I would shave with the incision in my jaw. He said to shave away from the incision and when you get up close to it, to put your finger over it as a guide. I drew this out to make sure I had it right:

I also wrote down:

   Face stitches come out ~1 week
   premineralized matrix - prevent fiber union
   after 6 weeks change out wires w/ rubber bands
   initially, I'll be able to open my mouth about 10mm, will take 3-4 months to get back to ~40mm
   stitches in my mouth will take about a month to dissolve

The most important thing to watch out for is infection, which can cause dehisance. Bacteria can cause a barrier to be formed preventing bone graft from taking. External bone fixation mechanism would be required if this failed. So it’s important to keep clean.

After surgery, there would be lots of 15 minute appointments.

The second phase of this. After 1-2 years, the bone that grows into the graft will be more solid than the bone previously there. Osteoblasts actually dissolve the graft and replace it with new hydroxyapatite.

I need to keep a folder with my records, chronologically ordered. In the event that he can no longer provide care, he will provide a successor if necessary.

He also said 19 out of 20 oral surgeons would refer out for this sort of operation.

I asked him about anesthesia and he said that in the bone graft, they put a long acting anesthetic called bupivicaine which lasts for 8-12 hours. I would have a steroid, pain reliever and antibioitics (probably a cephalosporin) on IV. He didn’t know what I’d be given, this is determined by the anesthesiologist the morning of the operation. But I could talk with them that morning.

The surgery would happen on a Wednesday and I’d go home either Thursday or Friday. On the way home, I’d stop off to see him, then I’d see him on Monday and a few times the following week.

I wrote down:

   endotracheal-nose wind pipe tube to stomach to suction so no nausea

I’m taking this to mean that:

   I will have probably have an endotracheal tube
   I will have a tube suctioning my stomach

He also said that he didn’t anticipate using a urinary catheter.

I asked him if I’d have to resolve my nasal (and sinus?) infection before surgery, because if not it could lead to pneumonia. He said definitely.

I also wrote down:

   * pathology report - talk to ?

I think this was in response to me asking the question of what would happen to the tumor.

I also asked him about the biopsy, although I didn’t write all of this down. I read about people using Fine Needle Aspiration Biopsy (FNAB) to successfully diagnose ameloblastoma and I asked him why he didn’t take this approach. He said that with the biopsy approach we took, we would definitely know, whereas with FNAB there could have been a degree of uncertainty. He had a point about this and I’m all for more definitely knowing, so I was okay with this. I asked him what part of the jaw he’d biopsied, whether or not that would cause a new opening in the tumor or bone that could cause it to spread. He told me that he took the sample from the center (cancellous) part of the bone, while getting some of the boundary. This part is all from memory, but I think this paragraph describes the gist of it. I drew a picture out in my notebook and asked if I had it right (yes):

I asked about monitoring during anesthesia. I was told they’d have pulse oximetry, CO2/O2 levels, EKG, temp monitored.

I asked him how many of these he’s done and he said he’s done 4-5 odontogenic tumors in the last year. He’s on call for the hospital once a month.

But there is no guarantee, and I should put my ducks in a row.

He said they would send notes, photographs, etc. I just need to give them a physical address to send these to, if I want to get a second opinion.

I also mentioned the vesibuloplasty and the atrophy of my left maxillary paranasal sinuses. The vestibule is on the inside of the cheek. I also failed to talk about the siliadiasis I had Feb this year and whether or not it was related or significant to my ameloblastoma. And what happens to the bone sample (with the tumor). I would like somebody to actually study this, because it’s an acanthomatous ameloblastoma (which I only found once instance of when I was searching through the literature). They were going to follow up with me on these.

I also wrote down:

   turbinate thin okay

Although I’m note sure what this means.

Also, there would be a physical and history appointment before surgery.

I have to say though that after this meeting, I had quite a bit less anxiety about things.

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