Hi,
I was diagnosed with a Dural Arteriovenous Fistula in my Occipital region in October of last year. After numerous doctor's appointments and 2nd and 3rd opinions I have scheduled my glueing for May 22. Can anyone tell me side effects/experiences they have had with this procedure? Also my doctor at Johns Hopkins is not sure if I have a DAVF or an AVM of the diploic space, he says he will decide what to do once he gets in there.
Embos are scary, but in the giant scheme of things, probably pretty safe. Will likely have a big headache following, plus pain where they go in (groin). Sore for a few days, then should be fine with no restrictions.
My wife suffered foot drop following one embo, and that required follow up treatment/surgery a few years later.
Best wishes,
Ron, KS
Having had 5 embolization procedures I can safely say they are not all that bad. A headache for a few days and a sore groin is as bad as it ever got for me.
Hi Shelby!!! I was terrified before my first Embio!!! Just had it on March 15th and I am going in for my second one on May 10th. For me I have a DAVF on the left occipital side. The sedative they gave me before going in to the operating room put me out so I didn't feel a thing they did the Angiogram and the Embio at the same time and 5 hours later woke me up. I had a headache but not worse than what I had been having before I went in and I had a very stiff neck through out the night in ICU. I didn't need to take anything for it though it wasn't that bad. I went to my friends house when they let me out of the hospital so I didn't have to spend the first night at home alone since I just live with my doggie and that is it. My leg where they went in at was sore when I tried to walk and a little weak for a few days I had trouble with the stairs but managed ok as long as I went slow. I had the Embio on Thursday, out of the hospital on Friday, home by Saturday and back to work by Tuesday. All in all just headaches which if I put ice over where my DAVF is then the headaches would subside for a while before coming back...strongly recommend ice packs!!!! :) Hope this helps you honey! All the best to you and let us know how it goes for you!!!
Hi Shelby,
We tried an Embolization 1st for my treatment of an Occipital/Parietal AVF. It is a conservative approach and can be very effective. I had a small headache when waking up, but it subsided quickly. The puncture site was sore for about a week or so, but not terribly so. However, his decision to decide what to do during the embolization is a bit unusual and in my opinion not the best plan. An MRI/MRV/MRA should present a clear picture as to what he/she needs to do. Best wishes to you!
Sorry to hear your in the group. But keep positive, I think how you approach this helps with the outcome. I had 4 embolizations in 2009, followed by two proton radio surgeries. I had a huge avm. I still have it, but it's smaller. The first procedure was just time consuming. Mine was so large, they spent many hours mapping it. I had a headache, and neck ache afterward. If pain relievers don't help, I liked ice packs. My dr.s didnt use glue though, they used onyx. (not the stone, but a thicker compound then the glue, sort of moves slow.) When things went normal, I was back at my job, three days later. keep positive!
I have had 5 embolizations and they weren't that bad even though it can be a little scary. my groin was sore for a few days and had a head ache for a few days also but nothing that my Tylenol didn't take care of
Thanks to everyone that replied to Shelby's questions here. I have the same question so you were all very helpful to me. I'll be going in soon for an embo for a DAVF. They are going to put in a long coil in mine. Lucky me they are going to have to use both sides of the groin to go up both sides. Said there is a 75% chance he can get to it that way, if he can't then it'll be the knife.I'll be sure to put some ice packs in the freezer!
I had a dural AV Fistula, left temporal lobe, which they embolised with a glue-like substance (Onyx). I had a bleed and a stroke. They didn’t find it for several days because it didn’t show up on the MRI (only angiogram). After the surgeon embolised it, I had facial paralysis on the left side and my left hand was curled,up like a claw. They say you run more risks with an embolisation than with an angiogram. However, do not worry as I had a lot of trauma to my brain. I suffered a bleed and a stroke. They thought I had a blood clot so they gave me blood thinners until they diagnosed me with an AVM. I am pleased to report that with accupuncture my facial paralysis is gone. One week of physical therapy resolved my hand issue so that my left hand is as strong as my right hand.
I have had two embolizations with onyx glue March 21 and June 6, 2012. I had side effects of major headache and fatigue. My hair has fallen out along the back of my hairline. I am scheduled for gamma knife radiation at Mayo soon, as the emobolizations have not been totally successful. You ?
It's been a while since I've been on here but my embolization went well. I was only in the hospital overnight and hod no problems other than corneal abrasions in both eyes from the procedure. It took five hours and Dr.Gailloud said it was very large and required alot of glue. He got 90% of the AVM (of the diploic space) and also glued an unruptured aneurysm I did not know I had..I will be going back in December for hopefully my last embolization.
So glad to hear your Doctor was able to get 90% of it.