Does anyone know someone who didn't have the surgery?

Hi, all i would like to know does anyone know someone who has an AVM that bleed once and didn’t do anything else did they ever have another bleed? How was life for them knowing that it could but did nothing and lived a good productive life without surgery?

Hi Sheree, well I did not have the surgery, but I did have Gamma Knife.
I wrote a blog about my GK experience and I update it from time to time.

I had a stroke from a bleed on 12-12-08.
The doctors gave me another stroke 4-16-09, when they tried to embolize my avm.
After the second stroke, I went for GK instead of craniotomy.

This is what I believe, I bled several times before the stroke and I was misdiagnosed.
I had problems since I can remember, they seemed like little things, but I never forgot them,
I did not seek medical attention for all of the problems. I know now that it was the avm.
I’m going to name a few of the issues, I might not remember everything, but I’ll name what I can think of.

• burning feeling on thigh, it did not happen really often(nerve damage from avm)
• arm would not move for a few seconds when I was 18, I’m now 51
• fainted when I was 17
• severe headaches when my period came on(could of been hormonal)
• delivering my first daughter, doc try to pull her with forceps, she would not come, my leg started to go up and down on its own, doc said he hit a nerve, he had to do a c-section.
• 3 years before the first stroke, I went to emergency and the doc said I had a neck sprain.
He was wrong and I paid the price for his error with a stroke.
• a weak knee from time to time when I was in my twenties(it always seemed to happen after a concert)
I suspect, I was screaming a lot so it may have caused a bleed or some kind of problem.
• I lost my voice a lot, sometimes completely, most of the time I was just hoarse.

I’ve done a lot, but I never felt real good. People would say remember when you were young and had a lot of energy. I would say, “no, I don’t”. lol I have never required a lot of sleep, but I didn’t have a tremendous amount of energy either.

This information is for your FYI.

My avm is stable, but it is still there, I thank God it is stable. It takes up to 3 years for GK to get rid of the avm, if it is going to get rid of it.

Remember, every avm is different, but the more we know, the better decision we can make as to what we are going to do about the avm.

Peace,
Ameenah

Thanks for your reply I will go read more more on your blog , I have read a little about the GK but if it is the same as what my doctor was telling me about he has told me because mine is so large that, that wouldn’t be a good treatment for me. Good you are stable right now just new to all of this so I value what everyone has to say. God Bless

Ameenah said:

Hi Sheree, well I did not have the surgery, but I did have Gamma Knife.
I wrote a blog about my GK experience and I update it from time to time.

I had a stroke from a bleed on 12-12-08.
The doctors gave me another stroke 4-16-09, when they tried to embolize my avm.
After the second stroke, I went for GK instead of craniotomy.

This is what I believe, I bled several times before the stroke and I was misdiagnosed.
I had problems since I can remember, they seemed like little things, but I never forgot them,
I did not seek medical attention for all of the problems. I know now that it was the avm.
I’m going to name a few of the issues, I might not remember everything, but I’ll name what I can think of.

• burning feeling on thigh, it did not happen really often(nerve damage from avm)
• arm would not move for a few seconds when I was 18, I’m now 51
• fainted when I was 17
• severe headaches when my period came on(could of been hormonal)
• delivering my first daughter, doc try to pull her with forceps, she would not come, my leg started to go up and down on its own, doc said he hit a nerve, he had to do a c-section.
• 3 years before the first stroke, I went to emergency and the doc said I had a neck sprain.
He was wrong and I paid the price for his error with a stroke.
• a weak knee from time to time when I was in my twenties(it always seemed to happen after a concert)
I suspect, I was screaming a lot so it may have caused a bleed or some kind of problem.
• I lost my voice a lot, sometimes completely, most of the time I was just hoarse.


I’ve done a lot, but I never felt real good. People would say remember when you were young and had a lot of energy. I would say, “no, I don’t”. lol I have never required a lot of sleep, but I didn’t have a tremendous amount of energy either.

This information is for your FYI.

My avm is stable, but it is still there, I thank God it is stable. It takes up to 3 years for GK to get rid of the avm, if it is going to get rid of it.

Remember, every avm is different, but the more we know, the better decision we can make as to what we are going to do about the avm.

Peace,
Ameenah

Hi Sheree,
Doctors say to do the GK, the avm has to be 3cm or smaller, embolization made my avm small enough for GK.
If it is not small enough some doctors are willing to do GK more than once. I guess they do half at a time.

Whatever you decide God Bless, at least you can make the decision. Some people get rushed into surgery or whatever and they don’t have a decision, it is made for them.

Peace,
Ameenah

Hi, yes mine is5cm, I haven’t had my first embolization yet am a little scared about that to but I know it has to be done. I go at the end of the month so see when the first embolization will be done. Thanks

Ameenah said:

Hi Sheree,
Doctors say to do the GK, the avm has to be 3cm or smaller, embolization made my avm small enough for GK.
If it is not small enough some doctors are willing to do GK more than once. I guess they do half at a time.

Whatever you decide God Bless, at least you can make the decision. Some people get rushed into surgery or whatever and they don’t have a decision, it is made for them.

Peace,
Ameenah