One year ago today I went under the
knife needle to have superglue injected into my brain to cut off the growth of a cluster of veins that had gotten out of control and ultimately could have killed me had it gone untreated.
Wow, that is a crazy sentence to re-read. It still feels pretty surreal. I’ve described the experience immediately following as how you might feel after a crazy frat party: I had a massive hangover (the migraines) and I had various personal body parts shaved (where they inserted the needles). At least no one drew a moustache on my face in sharpie, but that might have proven difficult considering.
Life has been pretty normal since all of that. I still get some migraines especially with pressure changes. They are under control for the most part, however. None of this would have been possible without the wonderful doctors and staff at KU Medical Center. What they are doing there truly seems like science fiction. The fact that I had brain surgery and it seemed no worse than a crazy frat party is pretty mind-blowing. Obviously, the migraines are worse than a simple hangover, but still.
My friend, the talented tattoo artist Chris Stubbs has designed this amazing sleeve for me partially in honor of my experience with the surgery:
It’s going on my left arm and connecting up to the other tattoo on my shoulder, the Cephaskelamech. Work began on it a few weeks ago and I’ve got another appointment set up in mid April! I can’t wait to see this thing finished!
It’s two days short of six months since I had brain surgery. It was a very busy Summer both at work and at home. We’ve had a lot of fun too, jumping off bridges, going to concerts, glamping with friends in the John Goodman Suite. More on that stuff in the future…
Today I had a follow up angiogram of my brain to see if anything had started to come back after the surgery. The procedure went well. My neurosurgeon came in to the recovery area (I have to lay flat on my back for two hours to make sure I don’t rip anything open) to chat with us and told us that I am cured! There is no evidence of any part of the fistula recurring. He said that the procedure is so new that they don’t really know what to tell patients about long term follow up. Obviously if I start experiencing similar symptoms in the future, I’ll know what to do, but sometimes there simply aren’t any symptoms. He said that he would be comfortable not doing any follow up, but if I wanted to we could do another scan in a year. I’m leaning towards doing another scan, just for peace of mind and it might help them to know what to expect in other cases, but I haven’t decided for sure yet.
I told the neurosurgeon that I couldn’t express how grateful I am and how lucky I feel. It’s simply amazing to me that this kind of procedure is something that exists, and that I live within a couple miles of one of the few doctors that is performing it right now. The doctors, nurses, and staff are some of the best people in the world. They went out of their way to make me feel as comfortable and confident as possible. And Dr. Koji Ebersole is a rock star!
Unfortunately, I am still dealing with the headaches. I was on a drug that was helping, but the side effects are pretty drastic and I am prone to all of them. I’ve spent the last two weeks weaning myself off that drug and I’m hoping to start a new one soon. In the meantime, they have returned in full force. The main side effect of the new drug is that it can make food and drink taste funny, therefore people tend to lose 5-10 pounds – I think I’m okay with that, at least for a while. I’m sure the new drug will work and I’ll be feeling good again in short order, but this last two weeks of getting off the old one has not been fun. I hate to end this post on a bad note, so I’ll say it again:
I’m in my sixth week of recovering from the DAVF embolization – sitting around at home doing very little. The few times I’ve gone out, I’ve paid for it later with worse headaches.
I hate to complain, there are times that six weeks of nothing sounds dreamy, but I’m more than ready to get back to real life. As much of an introvert as I am, I miss being around people – I think I’m pretty much fully recharged at this point. I must admit, it took four weeks for me to rally start getting stir crazy. Though I was pretty drugged up for the first three.
As long as I take it easy, the headaches are tolerable. It’s when I try to do much of anything that they get bad. If I can find something to concentrate on, I can tune them out. I’ve been reading a LOT. I lost count of how many books and comics I’ve read over the last few weeks. Also, some TV shows and movies, when I can tolerate the sound. One thing I miss a lot is listening to music. There have been several new releases that I have queued up, but haven’t been able to listen to without pain.
I see a neurologist on Monday, less than a week away now. I’m really hoping that she can help me deal with the pain.
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.
I am pretty drugged up on painkillers and steroids to help my brain to deal with swelling as it comes to terms with what was done to it, so I may not make much sense. Please forgive me. I just wanted to post a small update.
I spent just over 24 hours in the hospital. I was able to get up and around pretty quickly, so they sent me home before lunch on Friday. The procedure itself took a bit longer than expected, I was in there for about four hours. The neurosurgeon ended inserting tubes into both legs to make sure they got all of the fistula. He told us that he’s 98% sure he got it all. I’ll have a follow up visit with him in a couple of weeks and then another arteriogram in six months to make sure it’s all gone. This really is the best possible news.
The most noticeable thing for me is the pulsing sound that I’ve been hearing for about five years is completely gone. It’s a little hard to get used to it not being there, especially at night.
I basically I feel like I have the worst hangover of all time. I didn’t sleep much at all the night before the surgery and I haven’t really slept much in the last five days, which I’m sure it due in part to the steroids.
Yesterday the neighbor a couple houses down from us decided to have her driveway ripped out by a couple of noisy dudes and a bobcat. Even with earplugs in, I could hear the rumble of the engine, the crashing of the cement into the dump truck, all of the the yelling. I was ready to murder someone. I know it’s not their fault, they have no idea. But jeez, of all days they could have picked.
My procedure has been scheduled for March 27th. I really wish it was going to be sooner; I’d like to get past this particular portion of life. It was the earliest day they had available, however. I’ve been pretty busy at work lately and for once I don’t mind so much. It helps me keep my mind off things. The weekends are not so easy, I have time to sit and worry. On the plus side, I don’t feel quite as guilty sitting around playing computer games all day. They are a great distraction! I played through both Portal games again and started playing Borderlands 2.
We just met with the neurosurgeon at KU Med to look at the images they shot during the angiogram. He had told me after the procedure and again today that he was correct in his initial assessment, it is a dural arteriovenous fistula. Today he went into a little more detail about the procedure. Basically, they’ll send a catheter up my leg into the veins in my brain near the fistula and inject glue to seal them off. If they are not able get everywhere they need to they might have to go a different route (the other side of my brain). Thankfully, I’ll be under for this procedure. They really need to be able to seal off all of the fistula otherwise it will slowly come back. I compared it to the four year fight we had with the bamboo in our backyard. If you don’t kill it all, it will keep coming back. That stuff is tenacious!
I will have to stay at the hospital for a day or two afterwards. Yay hospital food…
He did talk about this procedure in terms of it being a cure, but he also mentioned that we’ll have to monitor it to make sure it stays cured. They’ll be imaging during the procedure, he said the results can be seen immediately.
I am very lucky that this was discovered before it caused more damage. If the veins do give out, they can cause brain damage and even death depending on the amount of bleeding. Most people that have this condition don’t find out that they have it until after it starts bleeding out.
It’s serious, scary stuff and I’ve been feeling simultaneously sad and angry about it. Please have patience with me if I seem overly moody. I’ve been trying to keep busy to keep my mind off of the situation, but I’m also finding stupid little funny things that help me cope too. I really hope I don’t get an annoying song stuck in my head during the procedure, it might be permanent! I’ve got something on my mind, literally! Yeah yeah, I won’t quit my day job.
I should hear from scheduling soon; the doctor is expecting that I should be able to get in by early March, which is’t even a week away.