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.

2 thoughts on “What’s going on in my Brain or Somthing on My Mind…

  1. Ana

    Jake, I’m so sorry to hear about this. Let us know if there’s anything we can do for you. Anything! Thinking of you!


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