Here is my problem: About 6 months ago, I started hearing my heartbeat in my head.
It only happens when I get up in the morning, after 30 minutes it is over and all is well until the next morning.
An MRI and MRA showed a dural AVM, about 3 cm, behind my left ear.
The Intervention Radiologist who interpreted the images suggested immediate onyx embolization. My family doctor says: live with it.
I am 72 years old and of very good health. I would love to just leave it alone.
However, I am afraid that such a decision could cause a worse situation in the future.
If any of you can give me a suggestion, I would be very thankful. I am totally confused, but must make a decision soon
Another thing, I live in Central Florida. I don't think there are any doctors who have dealt with AVMs a lot. If I get it done, I would like for someone with experience to do it.. Any suggestions?
It is your decision. There are risks with any procedure. There are also risks with leaving it alone. It is playing the odds. Personally if I was thirty years older than I am I would leave mine alone. Research that I have done has been with cerebral avm's. Do a search for dural AVM's above and read all you can.
Look at the risks with embolization and then your yearly risk of rupture. Dural AVM's are suposed to be lower risk of rupture. It doesn't sound like you have major side effects that are hindering your quality of life. You will get many opinions but if you have been with your family doctor and they know you well then that may be an opinion that carries more weight then the Intervention Radiologist.
Robin
Dural avms behave differently from other brain avms. They represent 10% of brain avms. Dural avfs generally respond well to a single embolization, but dural avms may not. They can require a large number of repeat embolizations, up to 15. Members here have had some significant negative outcomes from embolization of dural AVMs. Some have been able to have their dural avms successfully removed surgically.
It is possible that medications can have an effect on these avms. If you are on hrt, or have started any new medications in the last five years, it could be affecting your avm.
Hi Gerda,
Tough Call, and one only you can make. I don't have any experience with dural avms.
I would be a little concerned that you have only heard the bruit in the last six months. Others, like my wife, have heard it all their lives and assumed everyone heard that in their head.......... If your's only recently started, it might indicate that your AVM is active or growing.
Another thing to consider, and since I'm 62, can more easily relate: 72 isn't very old anymore. If there is a good chance to fix it now, it might be wise. Any kind of AVM treatment most likely gets harder with age. Right now, you say you are in good health, but later, if something else comes up, it might be harder to treat. (My jaded opinion is if you have ONE thing medically wrong with you, Drs seem to do well to treat it; have two or three things wrong, it gets much more complex.)
Best wishes,
Ron, KS
Thank you, Ron, for your message It was very interesting to me.
Your wife is the first person I have actually heard about who is hearing the bruit and has heard it all her life. Does she hear it constantly? I only hear it when I lie down, or get up, for example in the morning. After that I have no sign of any problem.
After reading all the complications with embolization, I am more than ever leaning toward
leaving the thing alone.
I would love to hear from other people with Transverse-sigmoid sinus dural arteriovenous
malformations. Have they had it always? Have they decided to get it repaired? If not, how long have they lived with it?
Hi Gerda. There is no right or wrong answer on how to deal with a dural AVM. Whatever you decide we will support that decision. I did do a search for you on the word bruit…http://www.avmsurvivors.org/main/search/search?q=Bruit
You are definitely not alone!
Thank you so much for your wonderful messages. I may have sent you this reply before, but I have a new computer (Windows 8) and I am not used to it. Things appear out of
nowhere and disappear into cyberspace. But even if I repeat myself, you were the first
message at a time when I was very frustrated. Your suggestions are right on target, and the websites you sent me give me a chance to hear from people who have more or less the same problem I have. I saw that you respond to many requests, and I am sure you are
a great help to all these AVM sufferers. Thanks again.
Dear Robin, thank you for the excellent advice. I'm so glad that I have found this website. It is the first time that I can share my feelings to others and know that they understand what I am talking about. I now have several fact-finding researches going, and am confident to make some type of informed decision soon. Thanks again for helping.
Thank you, Barbara, for your help. I am fortunate to have found so many interesting people who have become so knowledgeable due to their health problem. I am in the process of learning a lot myself. Thank you!
Hi Gerda, I have a scalp avm above my left ear. I found the avm in the fall of 2011, and I started to hear my heart beating in my ear about 7 or 8 months ago. As well, if I am laying down and then get up to do something and then lay right back down I get a very loud high pitched sound kind of like gurgling or something draining in my ear. It drives me crazy. I am 56 years old. I am waiting for an angiogram & then back to see the neurosurgeon. For me, I am relatively healthy so I want to take care of it now and not wait til I am older & possibly have complications. It is a personal choice one that you have to discuss with your Dr. Get a second opinion if you are not comfortable with what you have been told.
Take care,
DeeDee
Hi DeeDee, it is amazing how much your experience is identical to mine. I wish you a successful procedure and a speedy recovery. I am still in the wait and see mode.
Thank you for sharing.