Post embolization side effects

Can anyone give me any insight? My husband has an AVM in his left occipital lobe. He just had his first of two embolization that will include open surgery. He has had a constent headache with aura and is pretty much non-functional. He will not get out of bed and barely eats. His pain medication barely last until the next dosage. Has this been anyone elses experience with embolization? I am so scared for him!

Julie, I’m sorry to hear that your husband is having such a tough time. I’ve had 4 embolizations within the last 7 months. Was he sent to ICU for a night or two following his embo? How did he feel at discharge? I felt great after my first, only to get home and spend a sleepless night with a dull headache, which progressed to vomiting. I was then readmitted and diagnosed with acute hydrocephalus, which required a shunt later that month. 23 days in ICU for November! My next 3 embo’s however, went without a hitch! When I did return to the ER following my 1st embo, the first thing they did was a CT to rule out a bleed. Best of luck to you and ur hubby, keep us posted. -GK

I only had on embo, but I remember I was like a creature of the night and couldn’t deal with any light of any kind for the first few days after. Then is slowly got better. I was in the hospital for 4 days and when I got home I was in so much pain. I honestly think I had more pain from my embo then my surgery after leaving the hospital. All of my headaches before my surgery were the most intense pain I ever felt and had light auras that looked like jagged prisms or had blotchy black spots. I haven’t had one of those headaches since my surgery and any ache I have in my head now will go away with a couple of Tylenol. I hope your husband starts to feel better soon! In a very big way I feel lucky to have been the person with the AVM because I am not sure how strong I would’ve been having to watch someone I loved go through all of the pain not being able to do anything for them. Many prayers for your husband and for you.

I am sorry to hear that. I had two embolizations one in Dec 08 and one in Jan 09 and I felt fine. I did have some slight head pain for a couple of days but other then that I didn’t have any side effects. My avm is in my left parietal lobe. I’m sure that where the avm is located as well as the size, etc… will depend on what kind of side effects one has.

Please let him know I’m thinking of him…
Rachel

hi julie, sorry to hear of your husbands pain after embo, please be assured though that it is common. I ve had 3 in the last 2 months and the pain following each has got worse with every one. My pain lasts for about a week as intense then usually becomes more manageable. I get the aura aroundu eye and also numbness and even hearing probs temporarily. My last one plus the crani is due in 3 wks. Fatigue is another big problem. I hope he is soon feeling much better. Good luck.

Hi Julie,

I have an AVM in my right occipital lobe and had my first embolization in October. Right after the surgery I had headaches, which seemed to only get worse when I got home. I was basically bed ridden with these headaches, and had to keep all lights off and wear ear plugs. I was taking 2 extra strength tylenol and advil every four hours for almost the entire week… even setting an alarm during the night or the pain would wake me up if I didn’t catch it. About a week after my surgery I woke up at 3 am with the worst pain I had experienced…I was convinced it had ruptured. My parents drove me back to the hospital and the MRI looked normal. After that the headaches seemed to decrease and were eventually gone! I hope your husband feels better soon.

Hi Julie, my son had an AVM in his left occipital lobe as well. He had two embolizations, both not being a positive experience. He had severe pain, physically could not move his head and vomited constantly, left him without any vision. His second one, 8 days after the first was even worse, he was completely non-funtional, the pain meds did nothing for him either, and the only nourishment was his IV for those two weeks. 7 days after the 2nd embo they did a 17 hour surgery to remove the AVM. It was a horrible time, and feel your fear… I hope he is feeling better!!

I've been reading through all the discussions, comparing others' experiences with what I might go through. I'm going to be having an embo soon, date not set yet, and it seems that practically everyone has had a bad experience. I was glad to see Rachel's comment about coming through hers OK. I'm going to think positive, and pray that God delivers me from all the terrible problems everyone else has been through. So far, I've been blessed; I don't believe that I have suffered as much as any of you other than the emotional factors. Thank you all for sharing your experiences. It helps more than you know. I wonder if Ben ever thought this site would be such a blessing to so many people!

Rachel said:

I am sorry to hear that. I had two embolizations one in Dec 08 and one in Jan 09 and I felt fine. I did have some slight head pain for a couple of days but other then that I didn't have any side effects. My avm is in my left parietal lobe. I'm sure that where the avm is located as well as the size, etc... will depend on what kind of side effects one has.

Please let him know I'm thinking of him..
Rachel

Hi Ms G. I just happened to see your post here and wanted to reply. Yes, from reading this thread it sure would appear that practically everyone has bad pain and experiences from embos. And while they obviously are no walk in the park, I think this thread is a bit misleading. Not intentionally and not in a bad way either! I would guess that many of the people that read it and posted replies were drawn to the title and wanted to share their side effects with Julie. It's definately a group to share and validate each others feelings!!! And that is totally what Julie was looking for was to make sure her experience wasn't completely off base. But those people who have had rather "easy" embo's may not have read this. Or may not have felt they had anything to add to the discussion, or really didn't want to rub it in that they had it easy! :)

So, my enitre point is not to think that you absolutely WILL have a rough time. I would be as bold as to say that maybe even half of the embo's are uncomfortable, leave you exhausted and sore, but not in as much pain as poor Julie's hubby or some of the people who replied. I think you have a very good chance of just having a "sucky few days" but not as bad as you may now be expecting.

Good luck of course and I'll keep my fingers crossed that you are lucky enough to get off better than all of these folks :)
Shalon

PS- I'm not sure Ben initially imagined this site would touch so many lives. But I can tell you for certain just how proud and inspired he is because of it. (He may not be so bold as to actually say that, but I will do it for him!) While he has changed many lives with his support groups, each of you and the sense of community that YOU all create, that WE create...it's has absolutely touched his life for the better as well. And continues to everyday. We are all absolutely grateful to him for this and I know the feelings are reciprocated.


MS G said:

I've been reading through all the discussions, comparing others' experiences with what I might go through. I'm going to be having an embo soon, date not set yet, and it seems that practically everyone has had a bad experience. I was glad to see Rachel's comment about coming through hers OK. I'm going to think positive, and pray that God delivers me from all the terrible problems everyone else has been through. So far, I've been blessed; I don't believe that I have suffered as much as any of you other than the emotional factors. Thank you all for sharing your experiences. It helps more than you know. I wonder if Ben ever thought this site would be such a blessing to so many people!

Rachel said:

I am sorry to hear that. I had two embolizations one in Dec 08 and one in Jan 09 and I felt fine. I did have some slight head pain for a couple of days but other then that I didn't have any side effects. My avm is in my left parietal lobe. I'm sure that where the avm is located as well as the size, etc... will depend on what kind of side effects one has.

Please let him know I'm thinking of him..
Rachel