Meeting with Oral Surgeon

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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Pelvic X-rays, take 2

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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Updates to bone graft article

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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Trapped Stuff

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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Pelvic X-rays

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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Visit to Orthopedist

Today I went to see the orthopedist. I was quite early, but it didn’t matter, as the oral surgeon’s office staff gave me the wrong address. At least they gave me the correct phone number. I showed up, went into the lobby of the building but couldn’t find the orthopedist or the group he was associated with.

So I called them. The lady who answered the phone gave me the correct address, which was next to the address I was told (but on a different street). I asked her how long when they were at the previous address and she said, “We haven’t been at the old address for about 5 years now”.

I was told he used this orthopedist all the time.  Right about now, I’m starting to doubt this. This seems kind of sloppy.

The building they are in is divided into two halves, with a receptionist (more like a “greeter” or director) at the front. Approximately half of the doctors are on one side, half on the other. The waiting room was long and narrow and felt really busy and quite drafty. My feet were quite cold, even though I was indoors and it was only about 50 deg F outside. The place seems like it’s setup for high patient volume, with (normally) two receptionists there.

The lady in front of me was complaining that she didn’t get a “call”. Was this a follow up care call? Or was this a reminder call? That part was not clear. The receptionist checked with the staff in the back (nursing staff, assistants, I don’t know?) and they said that they called all of her numbers. This also struck me as odd.

The paperwork I filled out asked me about every possible thing that could have been wrong with me. I appreciate the “holistic” or rather whole person approach … doctors sometimes get short-sighted and fail to notice a issue in another body system which has an impact on what they’re trying to do. This form also looked familiar. I’m thinking ADC clinic maybe is where I’ve seen this before? So I tried to fill it out in its entirety.

The other thing that struck me is the emphasis in the paperwork on workers comp. I gathered from this that they received ALOT of worker’s comp claims to the point of it being a source of revenue for them.

The assistant called me, came and got me and showed me to my room. And she said, “So you’re here for the pelvic pain?”. I had mentioned that I had previously had pain in my lower left abdominal region a few years back. I told her, “No, I’m here to see the orthopedist about donation from my iliac crest to treat the ameloblastoma in my left mandible”. She said that she remembered talking to my dentist. So I asked her how many cases like mine she’s seen here. She said that she’s been there about 3 years and she has not seen any cases like mine. She left the room. There was a table (bed) with a vinyl mattress on top of it with a pillow. The first thing I noticed is that there were black marks and possibly crayon marks on the vinyl mat. There was no paper cover. This seemed kind of gross to me.

She brought in (or maybe it was the radiation tech who did it) some disposable blue shorts that I needed to change into. I dubbed these “magic shorts”. I put these on and the radiation tech walked me back and laid me on another table, above which was an articulated arm with a glass viewing window. I presume this was the source of X-rays. She felt around for my pelvis and moved the arm around until she thought it was in place. I asked her what I should do with my legs and she that I should put them together. So I touched my ankles together as closely as possible. I asked her how much radiation each one gave me and she didn’t know the exact figure, but she said that it wasn’t as much as a CT scan (which I had previously mentioned to her that I had), because there was only about 1ms of radiation. I’m also wondering now if they use traditional film or if it’s all digital.

So I go back to the appointment room and wait for the doctor to come in.

He comes in and we chat for a bit. The first thing I think I asked him about was the risk for pelvic fracture. I had two journal articles with me where this happened in patients who have iliac crest bone donation for grafts elsewhere on their bodies. I didn’t show him these, but did talk about them. He said that he’d never heard of this.

In one of those papers, I had read about a procedure where part of the iliac crest was removed, the cancellous bone was removed, then the cap pat was restored. I told him I read about this, but I gathered that they actually needed to take more. He said that was correct. They needed to take some of the cortical bone to form into my jaw, not just the soft cancellous part.

One of my big concerns was them having to go in through the muscle and tear everything apart. There are a lot of important nerves in that part of the body, namely those going to the intestines, genital area and legs, along with all of their support blood vessels (veins and arteries). Not to mention your intestines themselves. I didn’t want to hobble around on one leg the rest of my life, or worse, not be able to feel/move various and sundry parts of my body beneath my waist. He said these weren’t a concern. The ilium has a ridge of bone and all of the musculature and such attaches to the periosteum, which is like a piece of leather. They use a periosteal elavator to peel this back from the bone, take the graft, then cover the periosteum back over the bone and stitch it together.

The periosteum, he says, takes about 2 weeks to grow back together and it will start producing new bone to replace whats been removed. “Would it completely replace itself?”, I asked. He said it would grow back some, but not completely. It all depended on how much stress there was on my pelvis. If after it healed, I started putting more stress on it by exercising, I’d probably have a more complete grow back. I asked him if it was going to grow back like a knife-edge and then fracture in that section and he said it wouldn’t.

When you run, he said, you put 16x your body weight on your hip, when you walk, it is 4x (why did I randomly write this down?)

I asked him why he was using the iliac crest, instead of doing a fibular harvesting. He said a fibular harvest wouldn’t provide enough bone.

He said nerves, blood vessels are inside of the muscle, so the risk is minimal.

There would be a numb spot near the incision, with a high risk of hematoma.

The worst complication, though, is infection.

I asked him how often he did this sort of procedure and he said that he did it about twice a year.

When was the last time he worked with my oral surgeon? About 6 months ago.

I told him that ameloblastomas reoccur sometimes, so since I might need another graft in the future, would this leave enough bone for a potential future graft. He said that if they had to do another graft, they’d go over to the other side. So I said, “what about after that?”. He said that he could probably get three grafts out of each side if he needed to, but he’s never had to do this. I remarked, “I don’t guess I’d have much waist after that”. No comment.

I once again wrote in my notes “Muscles attach to the periosteum and nerves, blood vessels embedded in muscle, so risk to them is minimized”. I think I re-stated this and asked him, just to check my understanding. I also wrote in my notes,

• “said he’s never heard of fracture”
• “they don’t do the cap and take take cancellous bone and cap procedure – my oral surgeon needs too much bone
• “he says he’s a personal and profession friend of my oral surgeon and his family uses him all of the time”
• “separate anesthesiologist”

I asked him about the potential blood loss and whether or not I needed to pre-bank blood for the surgery. He said that he didn’t expect that I would lose more than about 50cc of blood, but I would ask [oral surgeon], because he didn’t know how much I’d lose from that part of the surgery.

I asked him how many of these were performed nationally per year and he said about 100K – 150K. They used to do many, many more but there are other alternatives now, like coral make it not as necessary.

I was trying to figure out the dynamics of how this worked. So the graft will be taken out here and will look like an upside-down “U” (cross-section wise):

But jawbones are surrounded by hard bone (with soft cancellous bone in the center). That’s what gives them their strength. So how do you get the bottom back? He said that the body will regrow this.

I asked him if they inject anything into either of the bone (harvested vs. graft target), such as rhBMP2 (recombinant human bome morphogenetic protein 2)? He said that on the donor site, they don’t. He’ll look at how I’m clotting up and if I need help, they spray this Gelfoam bloot clotting substance in before they close me up. He may or may not install a drain, depending on how much I bleed.

He said that I could be sore in the area for up to 1.5 years afterwards.

I will need 2-8 follow up visits, depending on how well I heal.

For a 2-3 weeks afterwards, I will need somebody to drive me around. I am not to drive until it heals.

I asked him if he had an email address I could email him at. He said they didn’t provide email there.

And if I have any further questions, I can call and ask for his medical assistant and she’ll take down questions and she’ll call me back.

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No More Stitches Weird Drainage Goo

While I was working on journal entries and eating a bowl of sherbet tonight, I noticed this meaty distasteful stuff in my mouth, back where the biopsy was done. I was able to remove it with my tongue and it was disgusting. It looked like the potted meat I had last night with the stew I had today. Absolutely vile.

And I noticed I was bleeding again. Not a whole lot, just streaking in my saliva and if I put a kleenex back there, it had some pink spotting.

And poking around some more, I noticed, no more stitches! I guess they finally decided to come out. They were supposed to come out in 3-10 days, but they took 14. What are these stitches made out of? Did I swallow them?

I brushed my teeth and cleaned my mouth out, rinsing with more chlorhexidine. Actually, I’m letting it sit in my mouth for a few minutes to soak everything and demonstrate it broad spectrum bacteria killing goodness.

Also my jaw was kinda hurting again before the goo and the stitches popped out or dissolved, thus the taking of the pain reliever earlier.

The other weird thing about it is, that my back most molar was black or really dark when I looked at it. Then after I brushed, everything seemed okay. What gives?

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Iliac Crest

http://en.wikipedia.org/wiki/Iliac_Crest
http://www.emedx.com/emedx/diagnosis_information/hip_pelvis_disorders/iliac_crest_model.htm
http://health-pictures.com/conditions3/iliac-crest-picture.htm
http://radiology.usc.edu/Presentations/SaddleProsthesis/pelvic%2520girdleb.jpg
http://forums.runnersworld.com/eve/forums/a/tpc/f/678106477/m/5471046294

Apparently, the iliac crest is where leg/hip muscles attach. Shit! And they’re going to have to take part of mine. Am I going to have to hobble around on a walking cane or crutches for the rest of my life? Maybe I’ll become a crotchety old man with a cane, like House MD.

Oh great! The external oblique muscle attaches there too. How do they attach the abdominal muscles back? What do they attach them too?

And the last is from runners. I’m guessing that I probably won’t ever run again after this. Not that I really could run all that far as I had bad shin splints. But it might come in handy some day, like if I have to run from a wild animal, a crazy person or some kind of natural catastrophe that’s happening right before my eyes.

Not to mention, the pelvis can fracture from this sometimes.

I’m going to make them take a CT scan of this. Really. I don’t want them to mess this up.

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