Tag Archives: Personal

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.