It hasn't been a very good week
This week has presented me with a few learning opportunities. Catherine and I are expecting to get a fair few questions about the week, so we thought we'd try and write it up here. That way we can tell people something that's consistent and complete, without having to type the same thing out 200 times. I also think that this topic deserves more space than twitter will allow.
On Wednesday Catherine was told she probably has a brain tumor, and to get an MRI immediately. This was obviously pretty upsetting, and if I've been irritable at you this week that's why and I apologize. Neither of us are medical professionals, and we didn't really know what this meant. Catherine was told that the tumor was "almost certainly" benign, but that wasn't all that reassuring.
Catherine had her MRI the next day. It sounds like a pretty unpleasant process -- your head is clamped into position and an IV fitted, and then you're left in a room which makes the surgical metal in your lower spine feel hot for 40 minutes. Did I mention they clamp your head so you can't escape? Another irritation is that Medicare doesn't cover this MRI
at all. So, you take people who have been told they have a brain tumor, and then you tell them that the government doesn't care enough about them to pay for what is considered the best diagnostic for their condition. Better than that, we rang our private insurer, and they told us that Medicare also forbids them to cover it. So, you're out of pocket at least $400.
The MRI report says this:
On the right side of the anterior pituitary, there is a hyperintense lesion
measuring 9 x 9 x 10mm (T x CC x AP). There is a fluid/fluid level with no
definite enhancement of the lesion following contrast injection. The
pituitary stalk is minimally bowed to the left. These appearances are in
keeping with haemorrhage into a pituitary adenoma.
The first piece of information we had was this paragraph from the MRI company. The GP gets this information about 12 hours before the patient, but our GP was so busy she hadn't read it by the time we did. We saw this about 8pm on Wednesday night, and of course immediately started web searching for the terms in the description. "Hyperintense" for example means "bright white on the MRI", which I believe to be a measure of density of the tumor.
Other learning includes that the pituitary is the gland which moderates the behavior of various elements of the endocrine system, including reproductive hormones. Technically, the pituitary is not part of the brain, but is attached very closely to it.
We saw the GP the next morning (yesterday), and it was mostly reassuring. The tumor is almost certainly not cancer -- I didn't even know there were non-cancerous tumors before yesterday. However, the tumor is affecting Catherine's reproductive hormones, and she is probably sterile for the period the tumor is present. The tumor might also get larger, and if it does it could impact on her optic nerves (which run to either side of the tumor) and that might result in varying levels of vision problems right up to blindness.
It sounds like there are a few courses of action available -- regular MRIs to monitor the state of the tumor. Surgery is an option to have it removed, which is more of an issue if you care about having more children or are suffering from vision disturbances. There are also radio therapy and drug options, but we haven't really had those explained to us yet.
The next steps are for Catherine to see an endocrinologist to see what he thinks about the MRI. Apparently there is a huge waiting list for those in Canberra, so it will mean a trip to Sydney at the end of the month. She also needs to have her vision tested. There's also a huge waiting list for that in Canberra but the specialist she is referred to does waiting list triage, so there is some hope that it wont be too long. We'll know more about that next month.
On a personal note, one of the other things that the last six months has taught me is that I'm not very good at talking about things which are really upsetting me -- our builder going bankrupt leaving us with an unfinished house, my mother in law's ailing health, getting made redundant by Google and this tumor incident being four examples from the last six months. I find I cope much better with these things if I have a chance to internalize them first before I talk to heaps of people about them. So, if I appear standoffish, that's why.
I think its fair for people to have questions about this post, but please remember that we're not experts and we've tried to include everything we know in this post already.
Tags for this post: health catherine brain tumor pituitary adenoma mriRelated posts: JJJ's hack
CommentSyndicated 2012-01-06 16:59:00 from stillhq.com : Mikal, a geek from Canberra living in Silicon Valley (no blather posts)
