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Archive for December, 2008

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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Today I went to see another orthopedist, just to be sure about the weird tear drop shaped spots on my previous pelvic X-ray (here). Mind you that those previous radiographs were taken about 20 minutes apart, so I figured it couldn’t be merely a fluke of the equipment or film. I was surprised I could actually get an appointment the same day. I told the schedular person that I had possible radiolucency in my pelvic radiographs and told her about my situation. I’m sure she didn’t quite expect that.

And the doctor looked at my radiographs and immediately knew what it was.

“Bowel gas”, he said.

At first, I really wasn’t buying this. I mean, if you took a ballon and put it in front of a concrete wall, you couldn’t see through the wall. Photons visible to us don’t behave this way, so why should higher energy X-rays? They are after all just photons. And it’s not like there’s some weird quantum tunneling going on here. And it’s not back-scattering either, as the emitter has no imaging film in it.

I was hoping to get a CT scan of my pelvis out of this, just to make sure everything was ok. I told him that maybe I asked the other guy so many questions that he didn’t notice this. After all, it is very subtle. He showed me a few test radiographs where there was pronounced bowel gas and they had similar “dark ghosts” throughout the pelvis, roughly where the colon would have lied. Some larger, some more dark, etc.

We talked about it some more and I agreed that if there were no spots in the same place, all was probably ok. He offerred to take another radiograph:

This radiograph was different, in that I stood up this time instead of laying down. The radiographer told me to touch my toes, but point my ankles out. At first, I thought she said feet together, so I asked. I told her that’s what the previous tech had me do. She was baffled why anybody would do that. So I asked her why and she said that when you stand that way, you get a better visualization of the trochanters (I think it was the trochanters).

And as you can see, about 6 days out that the spot is not there, but there is another spot further up on my pelvis. It too is bowel gas. He said that my pelvis looked perfectly healthy, that the arches at the top of my leg bone were well defined and nicely curved. He said I shouldn’t worry about this and go and get my jaw tumor fixed.

And that was re-assuring.

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Tonight, I updated the Wikipedia Bone Graft article to add information on risks and complications, with references.

Somehow, I didn’t get the impression that any of the major symptoms were issues from my orthopedist. Were these issues which were reported in the journals careless usage of tools during surgery? What gives?

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The incision where the biopsy was performed appears to have healed. As I mentioned earlier, the stitches came out last week – 14 days later. The only observable thing I see is that now I have a little gum flap or gum bud. Some little piece of gum that kinda sticks out. Probably ~1mm squared in area and 1mm thick.

But in my back cheek, back behind my #18 (backmost molar), or maybe down where the cheek meets the gum in that little pocket, I’m trapping food. And it’s gross. I don’t like re-tasting food a few days later. Yuck.

Between when I eat and when I brush and clean it out, I notice that as time goes by it seems like my left mandible gets more tender. And I was pretty sure that last night the lymph nodes in the side of my neck where swelling a bit. And I’m still taking my amoxocillin (beta-lactamase antibiotics).

I’m willing to bet that the food getting trapped is causing this and that bacteria are sitting in that gap, feasting on this and that my body’s getting annoyed and causing inflammation.

I can feel stuff with the tip of my tongue. And I’ve found that I can take kleenex and get back there and “wipe it out”. Q-tips work a bit too. And it I use the needless syring my dentist originally gave me I can get some chlorhexidine back there. But it cleans out in waves over 30-60 minutes.

Just something I need to bring up at the next visit.

  • I’m worried about the effects of this over a few weeks when my mouth is wired shut
  • I’m also worried about this being a potential source of bacteria preventing any graft from taking due to infection.

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Dealing

For the last several days, I’ve been trying to deal with this whole thing.  Hanving out with family was good and that kind of took my mind off of things.  I’ve been playing a lot of Wii and watching DVDs to that end.  There is a large part of me that really doesn’t want to deal with this right now.  Not denial, but perhaps rather detachment.

But I *need* to think about things.  I need to understand.  I so vitally and desperately need information because I will have to make big decisions.  And then I wind myself up quite a bit.

Anxiety can be good, if it’s a useful motivator.  But when you’re spinning your wheels in the mud, it’s rather less than helpful.  I feel like I have traction at least.

And I also am contemplating writting “the email”.  The one that will tell everybody what’s going on with me.  I’ve been mostly absent this holiday season.  It’s all I could do just to get presents for people around me.  And don’t even mention christmas cards … I don’t think mine are going to get sent out this year.

My emotions swing from being terrified and despairing, to being intellectually inquisitive, to just enjoying my life now.  Rinse, wash, repeat.  Multiple times a day.  And it’s kind of making me crazy.  I’m sure it’s taking it’s toll on the SO.  We’ve discussed quite a few things in the last week or so … what happens if I don’t make it off of the operating table, etc.  Planning for your possible demise is never easy, especially when you’re dealing with so many other issues.  At least I don’t have work on my mind just at the moment.

I’ve found that going outside and just doing something helps.  Doing work in the kitchen helps.

Somehow I’ll get through this.  I have to.  I want to live to see my daughter graduate from high school, then college, then start her own family.  I want to stick around and see what we clever humans manage to figure out in the next 40 years or so.

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UT

Today, I went to libraries at UT only to find that they were all closed. I checked before I left and could have sworn that at least PCL was open (I was hoping for eJournal access). But apparently, I misread the schedule.

It was not all for naught. I did start calling library-like places in Austin and got ahold of the helpdesk of one of the central libraries tha assists public libraries in Texas. It’s handy being in the state capital like that. And she told me about TexShare.

TexShare is cool, but it doesn’t give access to all of the journals I wanted, like “Journal of Oral and Maxillofacial Surgery”. I did find a few articles I wouldn’t have been able to get.

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Today I went to the orthopedist (as I mentioned earlier). These are my pelvic X-rays (you can click on the images for a full-size image):

In this first one, the tech got the X-ray a little too low, you can’t see my iliac crest:

So they redid it:

One thing you will notice that’s common to both is the subtle radiolucent area on the left ilium. Down and right from where they want to take the donor bone.

This is subtle, just like the tumor in my jaw was. Not very apparent unless you stare at it a bit. I’ve highlighted it here:

Is this another spot of ameloblastoma that’s decided to grow elsewhere? If so, did it migrate or was it always there? And if I donate with it there, will I fracture my pelvis?

I will try to call the orthopedist tomorrow. The Dr. said to talk to his assistant and she’d call me back.

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