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:
The new drug from the neurologist seems to be working! I haven’t had a headache all day – even the nagging little background headache that’s tolerable but annoying! I’m still pretty tired, but the neurologist said that that side effect would fade in a few days. I definitely have a much better understanding for what it’s like to not be a morning person.
I’m hoping to get back to work next week – I’m still waiting on word from my doctor. I’m amazed at how good I feel – living with that kind of pain for that long and then not feeling it all of a sudden. I’m listening to music again! I’m so freakin’ happy!!
I just met with the neurologist. I passed all of her neuro-tests with flying colors, which means there is no new reason for the headaches. They are simply a result of my brain dealing with the embolization. As she put it “Your brain is mad at you.” She prescribed some painkillers for when it’s really bad and something else that should help with the pain long term. We’ll spend a week or two figuring out the proper dosage of the new drug.
I am, of course having another bad headache now after going to the doctor and then the pharmacy. Every time I try to be even a little more active, I get these headaches – it’s beyond frustrating. She said it could take a few days for the new drug to really start helping. She generally prefers to have patients start it on a Friday night so they have the weekend to get used to it. Since I’m not working right now, I can start it tonight.
The good news is, I should be feeling somewhat normal again soon!
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.
I just talked to my neurosurgeon’s office about the MRI I had on Monday. My doctor said everything looks great. Unfortunately, I’m still having the headaches. They have referred me to a neurologist who will help me with pain management. Hopefully they’ll be able to help and I can finally rejoin society!
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.