An update a month earlier than expected

I know you've all been waiting at the edge of your seats for this. ;-) I ended up seeing an optometrist at my primary care clinic last week. He ran a few tests and concluded that, yes, there is a problem with my peripheral vision, but he couldn't see a reason why. Everything inside of me looks good. He wanted me to get my visual field tested and then see a neuro-ophthalmologist at the clinic, just to make sure everything was okay.

On Tuesday I had the Goldman Visual Field Test. It's basically a giant half-sphere with a chin rest in the middle. You're supposed to stare at a light in the center of the sphere while other lights of varying sizes are brought in and out of your field of vision. You let the technician know when you see the lights by tapping on the table.

When I went to see the neuro-ophthalmologist on Thursday, he showed me the results of my test, which were pretty much exactly what everyone expected them to be. I'm missing about a quarter of my vision on the lower left and lower right sides. It's a little unnerving to have such conclusive results, but, to be honest, it hasn't been affecting my life much. If Dr. Neurosurgeon wouldn't have said anything at my last appointment, I probably wouldn't have done anything about it. Or cared, really.

After examing my eyes yet again, the neuro-ophthalmologist basically said again that everything looks great and that this whole eye thing is just a result of the surgerys. He mentioned that it might be a good idea to get the visual field test performed again at a later date, just so they can verify that my vision isn't getting worse. If it remains consistent, though, then he's not too worried. This situation is not ideal, obviously, but I'll take it. As I said before, if this is the worst side-effect of my surgery, then I'd say I'm pretty lucky.

So that's that. I'm going to verify that Dr. Neurosurgeon has received the test results, and then I'm going to cancel my appointment at the U. I'm not planning on being there again until December for my next MRI, which is a very good thing.

Thank you all for the positive thoughts. I'm happy to report my good news!

Another day, another doctor

I've been debating about posting this, and have started and stopped a couple of times. I think the reason why I left this little blog alone was because I didn't want to turn into one of those people who was constantly kvetching about her health problems. Today, though, I'm going to kvetch a little, if only for my own sake. Feel free to leave at any time. ;-) Who knows, maybe I'll resuscitate the blog. Or maybe I'll turn into an account of my ever-fascinating daily life. We'll see what happens.

I saw my neurosurgeon the other day for a general follow-up appointment, my second in the past year. At the last one, in September, everything looked good, and I was told that, if my next MRI came up clear, I could switch to having appointments once a year (rather than once every six months). This was good news, obviously. If you're not familiar, MRI's are sort of a stressful experience. I've finally reached the point now where I can nearly fall asleep during the half hour scan, which is no small feat, considering how frickin' loud they are. I'm also not claustrophobic, though I can't imagine what it would be like for someone who is (they put a plastic CAGE over your FACE...it's unenjoyable, to say the least).

Anyway, at Tuesday's appointment, everything, once again, looked good. There has been no tumor growth, and my ventricles are normal-sized. When the resident was testing my peripheral vision, however, she noticed that I'm not seeing as well as I should. This isn't really that surprising to me, since I've been noticing some subtle vision problems myself, but it's disheartening nonetheless. My neurosurgeon referred me to an ophthalmologist at the University, but I can't get in to see him for nearly two months. I also have to go see my primary care doctor first in order to get an official referral so that my insurance will cover the appointment (yay insurance...). Apparently ophthalmology appointments can take FOUR HOURS, so I'll be missing at least half a day of work. Yikes.

I'm not really sure what peripheral vision loss is indicative of, or if they can fix it. Dr. Neurosurgeon indicated it might be a shunt-related problem, though I don't know in what capacity. If they need to adjust the pressure, they can do that from the outside by putting magnets near the shunt track (this makes me feel like a robot). If it's something else, will I need more surgery? I don't know. They didn't suggest that as a possibility, but they didn't really suggest ANYTHING as a possibility.

So the moral of the story is, I'll be living in mystery for another two months or so. Part of me was hoping to walk away from this experience scot-free. And I've been lucky--I haven't really had any brain tumor-related deficits to speak of. If peripheral vision loss is the worst thing that happens to me, then so be it. I'll deal. Even still, I'm anxious to hear what the eye doctor has to say. Hopefully this is manageable and not something that's going to continue to get worse.

Okay, I'm done now. Life is going really, really well otherwise, so I'm doing my best to focus on that. Onward and upward.

Paranoia it is

I had a follow-up MRI appointment today (just for general purposes, not because of the headache), and Dr. Lam told me this is the best my brain has ever looked. So, hey. Nothing to worry about.

Striking a Balance

I have a headache. This headache is more severe and more persistent than any headache I've had for roughly 2.5 months. So, the question becomes, is this just a headache? Or is this an Important, Meaningful headache? I'm going to give it a little while and see what happens.

And this is my life: striking a balance between paranoia and legitimate concern.

I am officially freeeeee of my picc line, which means I'm off the antibiotics and no longer need to stay up until all hours of the night. Everything else went well at the appointment today, too--the incisions are healing nicely AND my favorite doctor was there. I go back in a month for an MRI, but, assuming everything is fine, that should be it for a while. So...yeah. I'm feeling good.

haven't posted in a while...

I'm off to the doctor today for a follow-up appointment. They ended up taking out both the staples and stitches last week, so I'm not exactly sure what we'll be doing today. I do have a lot of questions for Dr. Lam (as usual), so it's probably good I'll be able to see him in person.

The plan is to start back at work next Monday. The legislative session starts on Tuesday, which means I'll be hitting the ground running. Or maybe I'll be hitting the ground at a slow jog, since everyone there seems to be emphatic that I not push myself. I'm really excited to go back, but I do need to remember that even though this work wasn't exactly physically difficult for me three months ago, it might be now. Nevertheless, I think I'm ready to have my life back. Even though I've enjoyed spending time relaxing at home for 2.5 months (one of the upsides of this whole situation), it has definitely made me a little stir crazy.

back at it

I went back into the hospital on Monday after I woke up and realized my wound was leaking (ewwww, sorry), a certified Bad Sign. My mom called the doctor and told us to come to the ER, where he would meet us. Part of me was hoping that they'd give me some antibiotics and I'd be free to go, but I was fairly certain that that wouldn't be the case.

In short, they ran a CT, collected some of the fluid, and told me they were admitting me. I was supposed to start back at work on Tuesday, so this was kind of a bummer, to say the least. They also wouldn't let me eat or drink anything since they weren't sure what they were going to do with me, which left me pretty miserable (as many can attest, I don't do well without food). That night, they informed me that my ventricles were back to being severely enlarged and that they would be putting in a shunt the next day. Who likes brain surgery? Not me.

They had tried to avoid the shunt from the get-go, since they have a tendency to get infected/malfunction. The doctors were hopeful that my brain would naturally adjust and figure out where to send my cerebral spinal fluid all on its own. Alas, it did not, so they put in a peritoneal ventricular shunt on Tuesday afternoon. A lot of people (well...relatively speaking) have shunts, so it's a pretty short procedure. And Dr. Lam, my beloved neurosurgeon, has spent much of his career inventing the devices, so I was pretty confident in his abilities.

The surgery went well, and they ended up exploring the infected area, too. The concern was obviously that the infection would spread to my brain, which would clearly not be good. As I later found out, they secured that pesky loose bone in the back with a couple of titanium rods and made the incision "water tight." Yeah, thanks. On Wednesday, they inserted a PICC line, which is basically an IV that leads to my heart (whoa!). It can stay in for a long time, meaning I can administer the antibiotics I need at home. The whole insertion process was not so fun, but at least I don't have to be poked all the time, since I'll need these meds for another two weeks.

Being in the hospital was different this time. I was definitely waaaaay less nervous about the surgery, but I also wasn't in the "I can't believe this is happening" camp anymore. I guess I was more annoyed than anything else--I had finally reached a point in my initial recovery where I was comfortable with my independence and able to successfully leave my house, walk around, etc. etc. I was feeling more normal than I had in a long time. This surgery definitely doesn't take me back to the beginning, but it's frustrating to be so dependent upon other people again. I was ready to have my life back. I still will, it's just going to take a little longer.

The other frustrating part is that, before the shunt surgery, I was kind of able to just leave this whole brain tumor experience in the past. Yes, it was scary and life-changing and all of that, but it was out, it was benign, and I was fine. Now, this shunt is going to be part of my life forever. It might need to be replaced at some point (it also might not...some people have them for decades without a problem). As the doctors told me this week, I will always need to be very careful when I get sick. If I get an infection anywhere in my body, it could spread to the shunt, and an infected shunt is a useless shunt.

For now, I'm just hanging out with my antibiotics, laying low, and willing my hair to grow (I'm back to bald). I get my staples out next week, stitches out the following week (yes, they used both...), and I also have to go see an infectious disease specialist. Sounds...ominous. Let's just hope these meds work, and I can be back on my feet--for real this time--in a few weeks.