I spoke with my neurosurgeon’s nurse practitioner today. They’ve scheduled me for an MRI and an MRA on Monday to hopefully figure out why I’m still having these dang headaches. I should have the results pretty quickly, my neurosurgeon wants to look at them before he leaves town next week.

Round three

We just got back from meeting with the neurosurgeon. He’s prescribing yet another round of steroids. Basically, my brain is having trouble dealing with the major changes caused by the procedure. He told us that the impact of the fistula was one of the most extensive he’d seen – a lot of veins in my brain were affected by it. He’s still pretty sure he got it all, but I’m going to have another arteriogram in six months to make sure.

My brain is having to deal with some major changes and it’s not happy. The steroids reduce the swelling which helps with the headaches. In the images he showed us, before and after, you could see a serious decrease in blood flow in the affected areas. The difference was drastic. I could also see the area that he glued.

If I’m still having headaches after the this third round, I’m going to schedule an appointment with a neurologist to develop a strategy to deal with the pain. He said it’s possible that I’ll be dealing with these for an extended period of time, possibly the rest of my life.

Today in the waiting room with all of the sounds, people talking, coughing, sneezing, phones ringing, etc. was nothing short of torture.

Brain Update

Due to continuing headaches, I was prescribed a second round of steroids. I’m on day three of the second round and I’m still battling some crazy piercing headaches, like needles stabbing through my brain. I’ve been trying to wean myself off of the painkillers, since I was almost out of them, but they just prescribed another round.

The neurosurgeon told me I would be dealing with headaches, but I don’t think it’s typical that they persist this long after the procedure.

I’m really starting to feel weird about not leaving the house in two weeks. I’ve been reading a lot of books and comics, when I’m able to concentrate long enough. I’ve also gotten caught up on Dr. Who. Galifrey Lives!

Don’t tell HR, but I’ve been helping my coworkers a little bit via email. Twitter and Facebook are also helping me not feel totally isolated from the world. I’m hoping I’ll be able to rejoin society soon!

I want to thank Maura and my mom and everyone that’s brought treats by for keeping me from gnawing on table legs; the steroids make me ravenous. I’m sure I’ll have gained about 20lbs by the time I’m feeling better.

Planned Convalecence

I’ve been trying to write an update to what’s been going on the last week, but it’s been hard to concentrate long enough to be coherent. I don’t intend for this to come across as whining. I’m just want to document and share my experience.

The steroids that I’m on are some of the strongest available and I started on a pretty high dose. I’m over the halfway point tapering off of them, but my body is still flooded with them. I’ve only had one good night’s sleep and that was only six hours. The rest of the nights I’ve spent either lying in bed wide awake with my racing thoughts or trying to read. Half the time, while doing either one, I’m in a dreamy/hallucinating state. My days have been spent in much the same way, trying to read or watch a show, but unable to concentrate on anything. It took me three days to finally find a book that I found interesting enough to try to finish and I know my brain was inserting things into the stories that weren’t actually there. I’m also taking painkillers which don’t help my mental state all that much either. I’ve been an emotional wreck, flipping from highs to lows rapidly. I’ve basically been a catatonic psychotic junkie, waiting until the next round of drugs.

Maura is a saint to have put up with me this week, I know I haven’t been the easiest to be around. At times, even the smallest noise makes my eardrums reverberate, which triggers an earthquake of pain and misery in my head. When the neighbor was having her driveway replaced last weekend, I was ready for murder.

At this point, I’m trying to cut back on the pain medication but if I wait too long to take it, my head really starts hurting. The doctor mentioned the possibility that I might need another round of the steroids to make sure to stop any swelling, and I’m beginning to suspect that it might happen. I’ve sent them a message to see what to do next and I hope to hear from them tomorrow.

I’ve also been feeling really guilty about missing work. I know it’s been a hard week for my coworkers and I feel bad not being there to help. I’m not going to push myself either though. I wouldn’t be much help even if I were there right now.

Thank you, everyone, for your emails, notes, and support through this. I may not be able to respond right away, but it really helps.