Avm News... not mine

Not Me... but a real good post.

Mel's case updated 01

I brought Mel for check-up on 3/2/2009, we reached Tawakal Hospital 12:30pm which the appointment has booked before CNY. We were waiting for around 30 minutes in order to see the doctor. Just because the doctor went to ward visiting.

To be honest, Mel was prepared for the admission to do the angiogram test, and the doctor told us is only 3 weeks the case happen, and worry about the blood clot still unclear, it is better to wait for another week. And next appointment is booked. I'm just curious, since if he knows the test only can be done after 4 weeks, why is he put an appointment after 3 weeks? And RM150 is paid for the short consultation.

He did mention after the angiogram, and it depends on the report, maybe send her to Ampang Puteri Hospital to do the Embolization.

I have done some survey about the embolization:

What is Embolization?

Embolization is a technique in which the blood vessels of the AVM are plugged with non-reactive glue. Under x-ray a catheter is guided from the femoral artery in the leg into the area to be treated. This is repeated for each vessel that feeds the AVM. Patients sometimes require this procedure to be repeated. This method is frequently combined with other treatments. Although embolization can be a complete and successful treatment in its own right; there are occasions when it's not possible to completely manage an aVM with this treatment. In this instance, embolizatin is used as a precautionary measure to reduce risk to the patient whilst undergoing other procedures.

Occiptal AVM before embolization (L) and after embolization (R)

Occipital AVM before embolization (L) and after embolization (R)

What are the Side Effects?

Every patient is different. Some minor side effects maybe observed shortly after embolization of na AVM by some patients, but most feel perfectly fine. The side effects are usually temporary and should subside within a few days to weeks.

Headaches are not infrequently reported. They will usually subside, but if they are persistent, the doctor will prescribe a short course of medication and this will usually take away the headache.

Other possible complications include stroke like symptoms such as weakness in one arm or leg, numbness, tingling, speech disturbances and visual problems. The risk of embolization is low for serious complications such as permanent stroke or death. The estimated risk should be discussed with your doctor.

Bleeding After Embolization Treatment

It is important for you to know that embolization will not usually completely close off an AVM. A person may still bleed from an AVM in such a case. It is not known whether or not partial embolization treatment reduces the risk of future bleeding.

What are the Advantages of Embolization Treatment?

• Embolization is very useful in making the AVM smaller in size in order to be suitable for radiation treatment.
• Embolization is very useful to reduce the blood flow through the AVM just before surgery. This makes it much easier for the surgeon to remove the AVM.
• Can be early repeated and staged.
• Chances of a cure with embolization alone are about 20%.
• No open surgical procedure.
• Short hospital stay.

What are the Disadvantages?

• This form of treatment can only be done if the AVM is made up of vessels that can be reached with the catheters.
• Multiple sessions may be required.
• There is a small chance of a stroke in about 1-3% occurring as the result of the treatment.
• The chance of bleeding every year in a partially treated AVMs is likely reduced by embolization, but not eliminated.
  

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He seems to be straight about the head.... too bad that is not what they say about me....

I got no news when it comes to my favorite subject... me. I still manage to have a bit of a cold... yuck.
And I'm tired.... gonna go back to bad.... uuuuuuummmmm bed!!!!
on that note.... off I go.




Yesterday.


All You Need Is Love - The Beatles


The Beatles Hello Goodbye

There are some really good videos of the Beatles on youtube... go give the a look....

AVM News!

Not me... but worth the time...

Stuff the bus for Steven Styles

By Elizabeth MacFarland

A second grade class at Kirk Elementary School in Millington is stepping and helping one of their own, 10 cents at a time.

Ms. Damm's class is trying to stuff a school bus full of pop cans to help their classmate Steven Styles. Last May, 8 yo. Steven Styles learned about a spot on his brain. Doctors diagnosed him with AVM, a medical condition similar to a brain aneurysm. And when Steven stopped coming to school, his classmates wanted to help.

So far more than 100 bags of cans have been collected for Steven, a young boy fighting for life, an inspiration to all those around.

"He is just a joy," Ms. Holly Damm said. "He has touched everybody's lives in that classroom, he enjoys life and has the biggest heart for anyone and everyone. He does so much for kids."

As for Steven's parents, they say Steven has good days and bad days, but one thing is for sure.

"We can't look at the bads, we have to look at the goods," Steven's father Patrick Styles says. "We have to keep going and say everything we do for this boy is going to make him better."

If you'd like to help stuff the bus for Steven you can drop off your pop cans at Kirk Elementary School in Millington.

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And thats all... I'm still sick... dagnabit!
Good bye... for now.

I'm Sick...

I'm NOT going to try to talk to you... I've got a cold.Here have some stuff...


okay... that was a little big rough...

Try this...

okay no was your answer...
Try this one...


alright... enough...


And no news on the AVM front.
yaaaaahhhhhhh!
gotta go... good bye for now...

AVM News and my cold.

Last month you will recall that my buddy Ben Munoz and I launched LivingWithTN.org. 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 AVMSurvivors.org. 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, LivingWithAtaxia.org. 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 LivingWithAtaxia.org. Cheers.

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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).

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

hip hip hooray... splat!

i really did not feel like getting out of bed!
had something to do with my company for sure!

plus today is my last pt !

i has gotten kind of cold here as well... that just sucks!
oh well....

i have a good Duke Lacrosse bit in my head... we'll just have to see how it turns out on paper.

thats it so far... good day.

what do we do...

yep... it is cool