health
Today is my one year Brainiversary!
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!
The Dural Arteriovenous Fistula is Gone!
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 CURED!
Feeling good 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!!
Neurologist
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!
More Waiting
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.
Good news/bad news
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!
MRI & MRA
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.
Scheduled
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.
Bamboo in my Brain
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.
Brain Update
The Arteriogram was yesterday. It went well but it wasn’t the most pleasant experience. I now have a hole in my upper leg/groin area that hurt like a @#%(!.
The day was very long. Originally we were supposed to be there at 11:00 to sign in and prep for a 12:00 procedure. It got bumped back several hours due to an emergency. The scheduling nurse came out to talk to us and offered to let us walk around and she’d call when it was close to time for us to come back. We live five minutes from the hospital, so we just went home for a little over an hour. I watched an episode of Dr. Who and caught up on some email.
We got the call and went back to wait some more and then finally went to the prep room where I changed into one of the wonderful backless robes and got all plugged in. We waited some more for the room to become available and then I was finally being wheeled into the operating room. I met some very nice folks who explained everything clearly and even gave me a nice bikini line! She told me a story about an 80 year old gentleman who she had prepped a while ago. He was obviously very nervous and uncomfortable and while she was shaving him, he asked why they had to do both sides. She replied that they might have to switch entry points and besides his wife had entered him into a bikini contest! He laughed and was much more talkative and comfortable after that.
The procedure itself was weird. I was awake with very mild sedation because they wanted to have activity going on in my brain (yeah, I know what your’e thinking now…) They ran a very small tube up into my neck where they would inject dye that would make it’s way into my brain as they were shooting x-rays. Every time they injected the dye, I had to be completely still, with my eyes closed; no breathing, no swallowing, no moving. My neurosurgeon was the one running the procedure and he would repeat that, mantra-like every time. It was almost hypnotic. The dye made my face feel like it was on fire. I could feel it in the back of my throat and at the bottom of my ears but it spread to my cheeks and nose a little. It was kind of like a wasabi rush, very uncomfortable for a few almost unbearable seconds then gone. During a couple of the shots I could see what looked like a million shooting stars. He also said they might make me feel dizzy, but that was not terribly accurate; it was more like the entire world twisted in incomprehensible ways and I was at the center of it.
After the procedure, I had to lie flat for two hours to make sure there was no bleeding or excessing swelling. Never in my life have I had so many different people check my groin so many times. We came home around 7:45 and ordered a pizza. I hadn’t eaten anything in twenty-four hours at that point; I was so hungry! I’m very glad I took a couple of days off from work, I’m feeling okay, but it’s very sore and I’m supposed to be off my feet as much as possible. Walking around is okay, but bending over kills.
I’ll meet with the neurosurgeon next Wednesday to go over the findings and figure out what’s next. He did say after the procedure that he was correct in his initial assessment; it IS a dural arteriovenous fistula. He said it definitely needs to be taken care of soon. I do feel like I’m in very good hands with him. Besides the obvious risks of the fistula, I am really looking forward to not hearing this damn pulsing in my ear any more.
What's going on in my Brain or Somthing on My Mind...
As some of you may know, a little over a year ago I had a mass removed from the crown of my skull. Initially my physician and the general surgeon that he referred me to thought it was just a mass of fatty tissue. It had been there for a couple of years and never really bothered me.
I was on the table and prepped, Maura sitting nearby. The surgeon had the needle with the local anesthetic to my scalp when he realized that his fingers were bouncing with my pulse - there was blood flow in the mass. He quickly pulled the needle away, and explained to Maura and I that he couldn’t proceed with the procedure without a scan and a proper operating room. If he had inserted the needle the mass probably would have started bleeding uncontrollably.
Within a few days I was admitted to the hospital to have the mass removed. The procedure and recovery went well. In my follow up with the surgeon, he told me that what he had removed was a kind of disgusting mass of veins and he told us that it was an arteriovenous malformation (AVM). At about the same time that I had started to notice the lump, I had also noticed that I could hear my pulse very loudly in my ear, much louder in my left ear. With that diagnosis, it made sense that I was hearing it and it should have gone away after removal. The surgeon told me that I would need to talk to my physician if it didn’t go away.
Well, it didn’t go away. It might have faded for a while, or that might have been wishful thinking on my part. But it was definitely back.
About a month ago I talked to my physician about it and he decided to go ahead and do an MRI to see what else might be going on.
After talking to my physician about the results of the scan, it was evident there was something else inside my skull. He referred me to a neurosurgeon, who suggested that I talk to someone at KU Med. This week I finally got in to see a neurosurgeon there.
The good news: I do have a brain, I saw pictures! I almost asked them to email me some of the images, but I didn’t. They were pretty cool looking. It’s really surreal to actually see the inside of your head. I’ll ask them next time I’m there. I know many of you will need to see proof…
So, it turns out it’s not an AVM. The neurosurgeon thinks it’s a dural arteriovenous fistula which is similar to an AVM but not congenital. Blood is traveling through veins that were not designed to handle the pressure. They do the best they can, but they can only take so much so they start dumping the blood out in other places. The thing that I had removed was part of the fistula. It turns out that removing it was probably a bad idea. I’m pretty lucky that it didn’t make things worse inside my skull. If left untreated, it will most likely cause major problems.
I’ll be going in for an angiogram in the next couple of weeks which will provide a very clear 3D image of the area. I’ll be awake for this test, which won’t be fun, but the surgeon assures me that it’s not as bad as it sounds. Plus, I’ll have some sort of drugs to relax me.
After the angiogram, I will most likely have a non-surgical procedure in which they inject glue to fill the blood vessels, through a long tube going into my brain - similar the the angiogram but I’ll be knocked out. It will probably be followed by a focused radiation treatment. The surgeon said that surgery is necessary only 1% of the time in cases like this.
The only symptoms that I’m aware of right now is the pulsing in my left ear. He did several quick tests today to see if anything else was off, and he seemed satisfied that nothing major was wrong yet. As to how it happened, he thinks it could be from severely high blood pressure, which I have dealt with in the past as a result of my thyroid issues.
Small update: The angiogram has been scheduled for next Monday.
Resolutions
It's the beginning of a new year; a chance to start fresh. All of the bad habits from last year can stay in the past. Whatever. There's actually only been one year in my entire life that I actually followed through with all of my resolutions. My friend and I set some very specific, achievable goals and held each other accountable for them. At first I wasn't even going to bother with any, I usually don't, but as I thought about what I would want to achieve this year, I managed to come up with a few that I could deal with. So here they are, in no particulat order:
- Develop a thicker skin - I resolve not to let people get to me and make my life miserable, even (especially) the stupid people.
- 100 pushups - My wife and I have tried this program a couple of times, but some thing kills our momentum and we stop. Not this time, this time I resolve to trudge through the arms feeling like jelly phase and eventually reach 100.
- Second tattoo - I already have the designs of the next two chosen, I just have to get someone to draw the third one. I resolve to finally get my second tattoo.
That's it for now. They're nothing big, but they are very specific and definitely achievable.