Dural avm = safer surgery?

Hello, everyone. I am looking for an opinion on something. My AVM is in the dura of the brain, which is the tough protective covering of the brain. First, has anyone had an AVM aka “fistula” in the same part of the brain; secondly, am I right or am I being overly optimistic that since it is not actually in the brain that this makes the craniotomy to repair it safer? Any thoughts on this?

Yes I have one…actually more rare. No they pose their own problems I am told. I hade four embos and well tomorrow I go back to see dr. to see how I am doing. I am here if you need any help…Pease let me know and keep posistive xoxo Mare

I go for my first embolization on Tuesday… I was thinking the same thing but my doctor told me that they can pose there own problems! I thought from everything I read that they are easier to treat as well but that does not seem to be the case!!! Good luck

Hi. I believe my friend John Hoarty…
http://www.avmsurvivors.org/profile/JohnHoarty
and Jaime G…
http://www.avmsurvivors.org/profile/JaimeG
may have some thoughts on this subject.

It sounds like there is less of a chance of damaging any grey matter. So, less of a chance of permanent post op deficits due to brain damage. My AVM was just under the dura on the surface of the brain and my operation went really well. I also had a large bleed, that complicated things further and all I’m left with is a small scar they can hardly see with a CT scan. Sounds like you have very good odds. A little optimism never hurts anyone. Hang in there.

NBuddle,

Thank you for the information. I was thinking the same thing, but it’s nice to hear I might be right Trying to remain positive about this. My craniotomy is the 15th.

Hi Rachel, there is the benefit that since it is not within the gray matter there will be a reduction of the number of potential side-effects or peripheral damage, but not necessarily the severity. Remember, brain surgery is brain surgery. No matter what part of the brain.
Having a Postive and Optimistic attitude is essential! I wish you all the best.

Well Hello! You are one of very few people I have met that has the same thing I had, which is a dural AVF. My doctor was fantastic. His name is Dr. Germanwala and he practices at UNC Medical Center. He called me upon review of my angio and told me the news. He said that a dural AVF is a much better diagnosis than an AVM. Mine was in my right occipital lobe, and it affected the vision in my left eye. Also, I could literally feel the pulsing in the back of my head. I had regular headaches that I swear were “sinus”. I mean, decongestants made them go away, but nothing else did. It’s wierd but I don’t get them any more at all. And the pulsing is gone.

Nobody ever told me how big it was, or gave it any labels at all really, other than “dural AVF”.

Anyway, mine was completely treated by embolization … the glue type. It took them about six hours to get the job done. Then, they claimed to have gotten 90+ percent of it, but said that there may be more on the sub-dural side. The problem was that they would have to reroute the catheter and spend so much more time to go after the rest that they decided to let me come up for air and heal some first. So, we rescheduled a follow-up for several weeks later. Well, in the interim, my hair fell out and they realized that i had suffered some radiation damage from the imaging. So, we put off the follow up for severl months.

In the end. I went back for my follow-up on December 30th, 2010, and they did an angio and determined that I was completely healed after all. No more AVF! I was discharged and I don’t even have another appointment. I am now taking Hapkidp and Taekwondo with my daughter and camping and hiling with my son on a regular basis. I actually feel better (at 50) than I have felt for the last twenty years! What a blessing.

I wanted to give you my whole story because I would definitely like you to make sure that embolization is not an option for you before you go through a cranio. I mean, a cranio has its place, to be sure, but I feel so lucky that I was able to avoid that and still get a perfactly excellent outcome. So, at least it’s worth asking the question, if not getting a second opinion. I’m sure your doctor has really good reasons for suggesting a cranio. I am curious about it though.

I’m really glad Barbara H put you in touch with me and thanks for the friend request. I will certainly be thinking of you and sending you positive thoughts, prayers and good healing energy during the weeks to come!

To answer your question, I definitely believe that any “dural” diagnosis is better than the alternative, and yes, I believe your surgery will be a measure safer. Hopefully the recovery will be a bit easier as well. Mine was dural but had deep veinous drainage. I don’t know if you have that issue, but it was a minor complication.

Best of luck and keep in touch. I know you will do great!

John

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John,

Thank you so much for getting back to me! It’s nice to talk to someone who had the same thing as me. The neuro doesn’t think the glue is a good option for me since mine is located in the left parietal lobe and he said it’s a long way to go with the glue. He is afraid that since the vessels are so tiny once you get to that area, the glue could be dispensed too early causing a blockage and a stroke, or he could damage one of the tiny arteries, also causing a stroke. He also said that due to the location he can get a much better look at it directly with the cranio. He feels the cranio is safer than embolization due to the reasons above. I am very worried about the big things - death, stroke, a major debilitation afterwards, etc. I just want to get it over with. It consumes my every thought. I have this horrible habit of every time I do something thinking, “this might be the last time I do this”, and it’s hard to remain positive.

Rachel, I am facing the same thing now. From what I have read what you say is true, but the staging of the dural fistula seems to determine treatment options and risk. I am having a 6 vessel angiography on Aug. 31. Has your fistula been staged yet, and what are your symptoms?

Brittany