Brain AVM & Fistula

General
1

anyone can share with me about avm, fistula and black onyx.

we found out that my husband has avm/fistula in 2008. a neuroradiologits advised that black onyx is the best way to go. the black onyx gave a complications and my husband had to do a plastic surgery.

this year, the neuroradilogist found a small avm/fistula again.this time, the doctor did a percutaneous approach instead of the catheter that was done on the initial procedure.

my questions are as follows:

- will amv/fistula go away
- does black onyx gave anyone complications?
- anyone experienced avm/fistula on the head that can share us helpful advice

thanks in advance to all

2

jrj6, what kind of complications did your husband have from the onyx? Were the complications on the scalp? Scalp avms tend to be more "dynamic" necessitating more treatments. Getting some additional opinions from other doctors may help you determine whether continuing the onyx is the best course of action.

3

dancermom, yes the complications are on his scalp. both procedures, he had to go through plastic surgery to remove the onyx that is being rejected.

we just saw the plastic surgeon yesterday and he cant explain why the onyx is still there.

what doctor should we see? neurosurgeon?

it seems so hard to find information from people I talk to since they never heard of this. im so glad this website where I can get more info from people who is aware of this.

many thanks for your response dancermom. I really appreciate it.

4

I would suggest you read Mountaingirls's story (http://www.avmsurvivors.org/profile/Mountaingirl), and I think she would be interested in hearing from you. I would also give you the same advice I gave her, which is to consult Dr. Suen at UAMS. I will happily give you his email.

5

Sorry, I'm going to ask another question: what symptoms indicated that the onyx was being rejected? And what symptoms (or test?) showed that the onyx is still there? Just trying to understand whether there is an allergy or something else is going on.

6

the procedure done through catheter in 2008 did not have the same complications that we are experiencing now.

is it because of percutaneous approach that is causing for the onyx to be rejected? we don't know and its the question we are trying to get an answer.

certaing area on his scalp where the onyx are pussing.

7

I will definitely read mountaingirl's story.

what is UAMS stands for?

8

University of Arkansas Medical Services.

9

I have heard of onyx causing inflammation or an allergic response some time after its initial application. Your husband's case should be reported as an adverse effect.

10

Here is some information about Onyx:

http://www.accessdata.fda.gov/cdrh_docs/pdf3/P030004c.pdf

The possibility of a subacute inflammatory response is mentioned, as well as allergic "hypersensitivity."

11

I would love to have Dr. Suen's email. Thanks dancermom!

12

should I report this to the doctor?

13

it wouldn't hurt. Sometimes doctors need educating, too. :)