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Archive for the ‘anxiety’ Category

Apparently, I misunderstood.  I very much thought I was going to see a resident and a resident alone, which kind of pissed me off.  It turns out you see the resident, they make their comments/notes/dx and then the faculty comes in a goes over everything with you.  I feel a tad bit better now.

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Today, I went over to the oral surgeon I’m seeing to pickup my radiographs and such. I have an appointment next week at UTHSC in San Antonio for a second opinion. The oral surgeon I see (and am leaning towards) said that if I wanted to get a second opinion, he wouldn’t be offended and the place I’d want to go is UTHSCSA.

Not that I think they’re going to tell me something different. I know what must be done. I’m worried about the details. I’m worried about getting all of the ameloblasts out so I won’t have a recurrence. If I have to go through this once, I don’t want to repeat it. I’m horrified that I’ll have to repeat it.

I’m also worried that if I go with UTHSCSA that I won’t be able to get local follow up support. I asked about this today when I stopped by and they said that I’d have to follow up with the other OS. I guess that means I’d have to spend a week or so in San Antonio recovering before I returned to Austin.

I also have to admit that first impressions (I know I’m more judgemental and pissy here than most, so don’t take this too seriously I guess) that I’m not that impressed with UTHSCSA. First of all, they tried to schedule me with a dentist. That was my fault though, I didn’t specify that I wanted the OMS. Then they put me with a resident instead of a faculty member with lots more experience. I was hoping to see one of the faculty, especially one with 10-20 years of experience. I’d strongly prefer them to somebody with 1-2 years of experience. I really didn’t expect this and it kind of set me back. I asked them if I decided to go with them if I could get surgery with the faculty instead of a resident. They said when the resident performs, the faculty is in the room. They said it’d cost more … which I’m fine with. I’d rather pay more now than later.

There is a certain grandeur and wow factor associated with UTHSCSA. Their hospital, University Health System, is quite huge and everything is there. I mean everything. I told them that I had “ameloblastoma of the left mandible”, but it didn’t seem to make much of a difference to the people scheduling. Granted they’re just schedulers. And pretty much before they’d even talk to me, they had to verify with their financial department whether or not they’d even take my insurance. I can understand wanting to get paid … maybe there’s not a better way to handle this?

I also went over to my dentist to have them make copies of any radiographs and such they have. Tomorrow I’m going to try and get the pano radiograph from before I had braces put on 4-5 years ago. Some of what they gave me to carry down was duplicate. But they were pretty kind to me and wished me well. You get to notice things like this. And they kind of help.

I started the day out feeling pretty good, determined that things were going to get done and that I was going to be motivated to do them. My oral surgeon’s office called and asked if I’d scheduled the second opinion. I was caught up in work (and also not wanting to think about it) so I didn’t get back to them for a few days. I feel guilty about this. I sometimes wonder if they’re going to just tell me to forget it, that I’m too much trouble to mess with. I have this fear with everybody though. It’s kind of been ingrained in me from adolescence.

And I’ve started to be sick with worry again. Thinking about this makes me sick with worry, where I feel my stomach just tense up and just want to obsess about it. Then I want to put it out of my head and not worry about it. I want to procrastinate so I don’t have to think about this horrible thing. Or wrap myself up with work. Or spend hours reading Wikipedia trying to be escapist.

Some of these questions I feel are hard to answer and there’s no way to know if you have complete information. And this is frustrating. I’m trying to deal with the uncertainty. But it’s hard. And damn it, I don’t want to appear weak. But sometimes all this just makes me want to cry.

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Giving up the helmet

Today I took the helmet back. It didn’t fit, so it didn’t help anyways. Maybe I’ll stop freaking out now?

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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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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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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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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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