Blog
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.
Feeling pretty floaty
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.
Less than a week until endovascular embolization
In less than a week I will have superglue injected into my brain. It’s been a rough month of waiting, dampening the joy of the first days Spring and our birthdays. I would like to thank everyone who has offered their thoughts and prayers and help. I am very grateful to all of you. Particularly my wonderful wife and awesome coworkers who have had to deal with my black cloud daily. They have helped me try to stay positive and with the heavy lifting.
If you’re curious, here’s a video illustrating the procedure:
[youtube=www.youtube.com/watch
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.