To minimize AVM from growing

Symptoms & Treatment
1

Hi Everyone!
I am a new member of AVM survivors.
I am from Myanmar. I am 32 years old now and I have had AVM since birth.
I have had many minor surgeries since 6 months old. My major surgery was 2001. It is my last surgery to date. The doctors tired to removed AVM ( on the head, outside the skull ) completely. I was almost dead. but I am alive. I lost skin and hair on 1/4 area of my head but it's okay and I still have confident about my appearance. After 3 or 5 years, I and my family noticed that I still have an active AVM on my skull. But it is small. Now over 14 years it is a little bigger.

So, this discussion is about "How to minimize AVM from growing".
With this rate of growing, I may live full life ( 65+ years ) without doing another surgery. But my fear is AVM grow rate might be exponential. My AVM was ever growing since my brith. As my understanding it is because my body is also growing because I was young. Now I am now 32 years old and my body is not growing anymore. So, it should be able to put under controlled without any surgery. I want to slow the progress of it.

This is my experience so far for this topic.

1. Don't do exercise too much that can increase blood flow. such as weight lifting. Sports that can occur high heart rate.

2. Even if you have to do/ want to do exercise, Don't hold your breath. If you hold your breath during exercises, blood vessels will become bigger.

3. Try to Sleep with slightly upward positioned bed. ( My AVM is on the head, If I lay down flat, I can notice that my AVM is filled with more blood and pushing the skin to allocate more blood )

Please share your experience or thoughts about this.

Edit: 4. Don't drink alcohol.

  1. Cover your head(AVM) with a cap from directly hitting with sunlight especially when the weather is hot.

  2. Stay in a cool area as much as possible.

2

Hey... I have also had my AVM all my life. It is in my right occipital lobe. I have had many symptoms and also a very high bloodflow witch showed severals of aneurysm. The doc. told me that it should be treated, because of the risk of bleed would be over 70%..! I got my first embo. on the 15th of january, and next step will be Gamma knife. Starting proces on the 30th. og january ;-)

The things you write about keeping the bloodpressure down, is always a good thing (I think) as long as the AVM is active. Have you not thought about getting treatment?

3

Thanks for replying Allan. I am still thinking about getting more treatments. for my AVM, the doctor can remove it if it doesn't get too big but it would make me lose more hair in the process. My AVM doesn't give me any trouble if it stays in this size. I wish to keep it under control for next 10 years.

4

Hello, Chan, scalp AVMs are challenging to control, as the area has a lot of blood vessels, and AVMs in this area can get quite aggressive. I would suggest that you email Dr. James Suen in Arkansas at UAMS and send him your scans. The difficulty with having repeat surgeries is that the AVM may grow back more aggressively if it cannot be removed completely. There are other treatment options in addition to surgery which may be somewhat helpful in controlling the AVM. Your tips are really good, and I appreciate that you have added them here.

5

Thanks Dancermom.

6

There is some good information on the Facial AVM subgroup, Chan. Just click on "Groups" at the top of the page to find it.