Wednesday, December 31, 2008

AVM News and my cold.

Last month you will recall that my buddy Ben Munoz and I launched It's a site devoted to patients with Trigeminal Neuralgia (TN) helping other patients with TN. It's modeled on the community that Ben founded after his AVM aneurysm, called AVM Survivors consists of over 500 folks and I'm happy to report that LivingWithTN has about 70 folks actively participating.

Given how well both networks are going and the personal satisfaction we get out of helping out on them, Ben and I decided to start another network, We're kind of making this up as we go, but Ben and I felt confident we could handle another network because the participation at existing ones are so strong. We chose Ataxia because it's a neurological issue and a lot of people, 150,000, suffer from it. The network is off to a good start with 90 members already. The growth is mostly due to Alan Thomas, an incredibly inspirational guy, spreading the word. You can find Alan's blog here.

Anyways, I thought I would just give a quick update on our efforts. If you have ideas, suggestions or anything else you want to share, shoot me an email or check me out at Cheers.



Mike’s brain problem (AVM)

This is the story of my experiences into the unknown and heretofore unheard of world of Arteriovenous Malformations (AVM). My name is Mike and I have one. I have also begun this blog to give personal and ongoing testimony to the fact that, as the Bible says, God causes all things to work together for good to those who love Him and are called according to His purposes (Romans 8:28). Many kind people have asked me to keep them up to date on what is happening. This is my attempt to do just that. I knew that the day of October 23, 2008 was not going to be a typical Thursday morning when I awoke to a man trying to place an oxygen mask on my face as I regained consciousness from a severe seizure.

It was 5:30 a.m. and I awoke to a room full of people and a crying wife. I was confused and could not comprehend what was going on but I knew enough to apologize to one of the Earlham First Responders for making him get out of bed at 5:00 in the morning! Dan kindly explained that I had just had a seizure and that they were there to help me.

I then sat up on the edge of the bed and I remember the words of Psalm 73:26-27 coming directly to my confused mind: “My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” Nothing else made any sense to me at that moment, but that comforting promise from God’s Word calmed my soul like nothing else could have done. I am a follower of Jesus Christ. For twenty eight years I have sought to live my life in a manner pleasing to Him. I am also the pastor of Crossroad Evangelical Free Church in Earlham, Iowa, but don’t let that impress you, for I am fully aware of the great Reformation principle of simultaneously justified and yet still a sinner (simul iustus et peccator).

Though I have been cleansed by the blood of Christ through faith in His finished work on the Cross and His subsequent resurrection three days later, I am also painfully aware of the fact that I still sin against God every day in thought, word, deed, as well as in those good things left undone. Nevertheless, the grace of God to me on this surreal morning came with an unmistakable promise from God’s Word to my confused mind.

I then stood up and walked over to the dresser to put some jeans on over the boxer shorts I had worn to bed the night before. With all of the people in my bedroom it just seemed like the right thing to do. I think the medical personnel were surprised to see me hop up out of bed so quickly…from a state of apparent unconsciousness to jumping out of bed. I think it’s funny.

The medical personnel then explained that they wanted to take me to the hospital by ambulance. I put up a weak resistance because I knew that this was nothing to trifle with. So, I walked out to the front porch where the paramedics strapped me to a gurney and loaded me up. It was a rather pleasant 30 minute trip to Iowa Methodist Medical Center. Upon entering the E.R. we noticed that there was hardly anyone else in there. Good. I could receive the full attention of all the doctors.

As my mind began to clear up a bit I began to process what had happened and I reasoned that the seizure was just a fluke thing. After all, lots of people have a seizure at some point in their lives. Then began the battery of tests. The first test I was subjected to was a CT scan. My wife Karla became concerned when the test went on long past the time the techs said it would. Not long after this was completed an ER doctor entered the room to explain that I had a rather large AVM and briefly explained what it was. It was then that I was informed that I would be required to stay in the hospital for more tests.

I was extremely disappointed to have to stay overnight in the hospital. I hadn’t done that since I was five years old and had my tonsils out. For lack of space on other floors they put me on the heart floor with lots of truly sick people. I entered the room and sat on a chair next to my wife in blue jeans and a t-shirt. Minutes later a doctor entered the room and asked me if I was the brother of the patient…apparently since I was not in the bed. He did not notice the IV on my opposite arm.

I explained that I was comfortable where I was and that I didn’t see any need to get into the hospital bed. The nurse explained that patients normally lay in the beds with the hospital gowns. And here is the highlight of these two days. I politely but firmly refused to put on the ridiculous hospital gown with the wide open back door. Though I was still in somewhat of a loopy state, even Karla admits that I refused in a way that was as polite as was possible. An understanding nurse asked me if I would be ok wearing doctor’s scrubs. I said “Yes.” And that’s what I wore for two days and one night…to the amusement of doctors, surgeons, interns, and med students alike. To have even a bit of control over a difficult situation is not only comforting but it’s also a bit fun.

(Please click on the next entry Tests, More Tests, and Some Tough News if you want to find out important details about what was really going on with me).


Me... I got a cold... and really don't have much to say. So I'll say goodnight.

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