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[PSA] Arteriovenous malformation-cerebral (AVM-cerebral)

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T_Yamamoto

T_Yamamoto

Lifer
Many of you have probably never heard of AVM.
Probably for the fact that it affects only 1% of people.
This has many nicknames, the one that makes the most sense to you guys (or gals) is "The Teen Stroke"

Here is a brief definition defined my Mayo Clinic
A cerebral arteriovenous malformation is an abnormal connection between the arteries and veins in the brain that usually forms before birth.
Causes, incidence, and risk factors

The cause of cerebral arteriovenous malformation (AVM) is unknown. The condition occurs when arteries in the brain connect directly to nearby veins without having the normal vessels (capillaries) between them.
Arteriovenous malformations vary in size and location in the brain.
An AVM rupture occurs because of pressure and damage to blood vessel tissue. This allows blood to leak into the brain or surrounding tissues, and reduces blood flow to the brain.
Cerebral AVMs occur in less than 1% of people. Although the condition is present at birth, symptoms may occur at any age. Hemorrhages occur most often in people ages 15 - 20, but can also occur later in life. Some patients with an AVM also have cerebral aneurysms.
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My dear friend, Madeline Ray, has this.
She is only 16, the same age as me.
She has had chemo, twice, but it takes atleast 3 years to see if it worked (to shrink the blood vessels).
She has had her third stroke, 1/3/12.
I will never forget that day.
I just want everyone to know that this could/can occur to your child, your daughter or son.
I thank God that shes still with us today, she has changed me for the better.
She is finally going to come home Friday. I've visited her at the hospital (two different ones, she transferred recently to one in Charlotte).
Shes such a sweet, loving, beautiful girl and she deserves much better than being stuck in a hospital and such.

Me and Her 🙂
38608429910954964971235.jpg



That teddy bear's name is Cool Bear

This is just my little PSA about Teenage Strokes, and that it CAN happen.

Thanks for reading all this.
 
My brother had this, but nobody knew until he was 37 and started having seizures from where the area around the AVM had calcified through the years.
 
I wish her the best. As a cancer survivor, I know what it is like recovering from a big sickness... extremely difficult.
 
Pliablemoose said:
Is she not a candidate for embolization of the AVM? We do that in my department every day. I assist with those kind of procedures. The gamma knife stuff is old school compared to what we do.

http://www.youtube.com/watch?v=6MJWJZeGyk8

We use a polymer, Onyx, and/or platinum coils to do it.
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Gamma knife is a very good way of treating AVMs (as long as they are small enough to fit within the radiation field, which is quite small on gamma knife). It's particulary good, if the AVM is causing seizures, as it also seems to stop/reduce the seizures more than any other kind of treatment. The problem with gamma knife is that it takes up to 3 years to have its effect (although as experience with it increases, it is being recognised that things can continue to improve for 5 years).

Superglue or onyx embolization is effective, and because it works instantly, is better than gamma knife. However, it is much more dangerous than gamma knife - the guys I work with tend to warn prospective patients of a 5-20% risk of serious stroke during the procedure. The other big problem with embolization is that if the entire thing isn't taken out, the AVM tends to regrow - somtimes with a vengance. Often a good compromise is to embolize the bits that can safely be embolized, and gamma knife the remainder.
 
MAXIMUM FRIENDZONE level 99


😛


In all seriousness, I wish her well, and I also hope she won't take your friendship and care for granted.

But seriously, we also don't want to root for/support/get-trolled-on by yet another fuzzybunny user here
 
T_Yamamoto said:
Is he better?
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Depends on your beliefs - he died shortly after surgery.

Keep in mind that my brother was 37 years old and his condition (which he didn't even know existed) was considerably worse than your friend's because of his age. The relatively minor procedures mentioned in this thread were not an option for him. Since your friend is young and they found the condition early in life, I'm sure she'll be fine.
 
Mark R said:
Gamma knife is a very good way of treating AVMs (as long as they are small enough to fit within the radiation field, which is quite small on gamma knife). It's particulary good, if the AVM is causing seizures, as it also seems to stop/reduce the seizures more than any other kind of treatment. The problem with gamma knife is that it takes up to 3 years to have its effect (although as experience with it increases, it is being recognised that things can continue to improve for 5 years).

Superglue or onyx embolization is effective, and because it works instantly, is better than gamma knife. However, it is much more dangerous than gamma knife - the guys I work with tend to warn prospective patients of a 5-20% risk of serious stroke during the procedure. The other big problem with embolization is that if the entire thing isn't taken out, the AVM tends to regrow - somtimes with a vengance. Often a good compromise is to embolize the bits that can safely be embolized, and gamma knife the remainder.
Click to expand...

I think that's what she's doing because she told me it'll be like 3 years before she finds out if it works or not
 
NuclearNed said:
Depends on your beliefs - he died shortly after surgery.

Keep in mind that my brother was 37 years old and his condition (which he didn't even know existed) was considerably worse than your friend's because of his age. The relatively minor procedures mentioned in this thread were not an option for him. Since your friend is young and they found the condition early in life, I'm sure she'll be fine.
Click to expand...

I'm so sorry. These things are hard to find.
 
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