Hello all! Time for another update...
I just had my 6 month post-treatment MRI yesterday, with what ended up being surprisingly good timing, as I had an onset of treatment-related symptoms last week. I had taken an extended Christmas vacation from work, and started back Monday Jan 10. That night I started having ongoing dizziness, and by Tuesday morning I had ongoing waves of vertigo any time I moved my head, along with a mild headache and some increased tinnitus. I had had a similar episode 3 months prior, and it cleared up itself after about 3 days, unassisted (except by me taking it easy). At that time the doctor said he expected it was related to post-treatment swelling of the tumor (expected), and that they could prescribe steroids to tame the swelling and try to control the symptoms, but that the steroids could have some nasty side effects, and that it would be best for me to wait 3-4 days to see if things worked themselves out. Luckily they did, so I had never had to take the steroids at that point. However, this time the vertigo got worse - by Thursday (day 3) I had it constantly, even without moving, and it was starting to make me nauseous. The doc prescribed me some dexamethasone (yes, the decacrap), but said I might want to wait one more day to see if things improved before starting the steroids. So I went 4 days without the steroids, and upon waking the 5th day (Saturday) and not having any improvement, I decided to start them.
He's prescribed me 2mg 2x day for 3 weeks - if the side effects are too much, I'm supposed to go down to 2mg 1x day, but if it's not doing anything, I can up to 2mg 3x day. They said it might take a few days to 'kick in'. So now I'm on day 7 of the symptoms, and day 3 of the dex, and I don't know if it's doing anything. I only had 2 days of being constantly dizzy (even without moving), and have been back to waves of vertigo, mostly when moving. However, this happened the first day I started the dex, so I don't know if it can be attributed to the steroids. The interesting thing is I'm sort of getting used to it - I don't think it's any better, I'm just dealing with it as-is.
One big problem is I can't drive (and I live on an acreage, so no cabs or walking) - the dizziness/vertigo is still bad enough that I sometimes run into the walls, and can fall down if I turn around quickly. However my spouse had been driving me to town every few days for groceries and errands, and my job can be done from home. However, the other problem is I can't be on the computer for more than about 15 mins at a time, or I get a big headache, more dizzy, and start getting nauseous. My work is all done on the computer - so this is a big problem - essentially I can't work (it took me an hour just to write this post cuz I keep having to take breaks). I have had to contact occupational health and they will have to reopen my short term disability case (which may have other issues, which I will find out about tomorrow).
So now my biggest concern is, since I have had 3 days of dex with what I don't think is any real improvement, do I up the dosage of dex in the hopes that it 'cures' my dizziness enough that I can work from home again (or even drive), and take the chances on the side-effects from the steriods? Can anyone comment on their experience with dex (I have read several posts on here about the nasty side effects, and some who haven't had them)? How long did it take to kick in, and what dosage was that at? I think this is my next step - if I don't see any significant improvement tomorrow, I will up the dosage (as per the doc's initial recommendation). According to occupational health, I can take off as long as I need, but I have to be following the doc's orders, which technically means I have to up the dex in order to be covered for my days off. Thoughts/comments?
My follow up meeting with the doc about the MRI is on Jan 26, so they will be able to see if there was any significant swelling on the MRI.
-Cyndi-
