AVM

[LinCod]

In Nov 2006 my husband had 250 pds of cast iron pipe fall on his head and continued from there on in to have headaches and memory loss that they thought was going on too long for a post concussion so he had an mri.  Mri revealed an abnormal vascular structure in the rt posterior parietal lobe, suspcious of a dural av fistula.  He went on to have an angiogram which showed an avm in the rt parietal lobe, fed by an enlarged rt parietal artery from the middle cerebral artery & a mildly enlarged angular artery contributing to an approx, 1 cm nidus.  

1st question:..they say there is a possibilty he was born with this? I have found that this can also be cause by a trauma to the head, thus damaging the nervous system? And it ia awfully small to have been born with it, as from what I read, it grows with age? How can they state with certainty he was born with this and it was not a result of the accident? He was a normal 55 yro prior to this...never a headache, etc.

Secondly, they want to do embolization since it is so small.  Is this a good choice? They feel they can completely eradicate it in one 'shot' of the glue.

[Marla13]

There is another parent looking for support with a similar situation as yours. Look at the recent postings for 9/27/07. I metioned to post here and that I would mention for you to post there. I might be nice to write to one another for support.
Marla13

[Marla13]

Have you checked with local hospitals about a support group?
I know there is a lot of support groups for people who have aready had some type of brain injury.
You're right in the fact that someone like your daughter who has a condition but no injury really could use some support also. I would think there has to be something out there available.
The school social worker may also be able to help you out. Just a thought

[AVMOM]

My daughter was diagnosed with a large AVM - 4 to 5 cm and we've had her medical information evaluated by doctors throughout the country. Most encourage us to wait it out saying that the technology to fix her AVM safely and successfully doesn't exist. We've had to give up soccer and all team sports and that has been very hard on her. She's entering her teen years and I can tell she thinks about "the thing in her head" a lot - unfortunately focusing on what she can't do instead of what she can do. Are there any support programs out there that can help teens adjust and help them face the obstacles they've been dealt and go on living happily?

[vpozie]

I was diagnosed with an AVM a couple of years ago.  My docs have also said I was probably born with it.  I had Gamma Knife, which is much less risky than other treatments and can be done if the AVM is small.   The only trouble with Gamma Knife is that it can take a few years to completely get rid of the AVM (this is normal according to my doctors), which is frustrating for me.   Mine still hadn't changed as of one year post-Gamma Knife, but I'm due for my next MRI this winter (2 years out) to see if it's shrinking yet.  The great thing about Gamma Knife is that it's an outpatient procedure, and you can go back to normal activity the same day or day after the procedure.  Nothing has a 100% guarantee, but I think Gamma Knife is certainly worth a shot if your husband is a candidate for it.  The risks and recovery are so much less than other AVM procedures.

[Cleveland Clinic]

Thanks for the note. We don't know what causes most AVMs. Most likely this is congenital in nature (born with it). AVMs do not appear to be hereditary. AVMs occur about equally in both sexes and in different races. An estimation of 3 million people in the United States are born with vascular malformation, 10% of which are AVMs. AVMs may be caused by a rupture or clotting of a blood vessel during fetal development. Treatment options include surgery, stereotactic radiosurgery or interventions such as embolization/glue or coiling. The vascular surgeons tell you that you can never be sure that you can cure an avm with embolization but it is possible. The risk is very dependent on the user. Since the lesion is small, radiosurgery with a Gamma Knife would also be an option with less up front risk then embolization. It is hard to know which options is best without seeing the patient. Since the lesion was probably found incidentally, Gamma Knife may be a better upfront treatment based on risk. We wish you the best of luck and would be available for a second opinion if he would like to be seen at CCF.

[Marla13]

My son just had an AVM bleed in his frontal left lobe in June. They said he was just born with it similar to any birth defect. I would think the doctor could tell the difference in your husband's case why his is there. My son had the embolization done as a temporary fix so he would not have a second bleed. He had the AVM removed a month later. I was under the impression embolization is temporary thing. That it may need to be redone. You  have a small risk of stroke with the procedure and there isn't a 100% guarantee it won't bleed. The percentage is high that you won't have a bleed... don't misunderstand.... but it's just not 100%. My sons AVM was removed July 3rd and I'm happy to say other than some memory issues  he is doing really well. I'm hopeful things will continue to get better.

[agent99]

Hi,
My sister had the AVM surgery and she is ok now. But it was hard on her for about a year. She had a stroke during the surgery, she did get better.

She had hers at Duke University.

It has been about 8 years ago. She is 47 now.

I hope he does well, I will remember you both in my prayers.

Kaye