AVM Again?

I know it has been so long since I had my AVM removed. I haven't been feeling well and they have sent me to have MRI's and all that they always do. Did any of you ever have any thing happen to you after having the surgery done? Is it possible for me to still have problems in the future with my AVM. It's gone and although I will never be me again I have been ok with the fact that I am still here but is it possible to still have problems years after?

Without knowing the specifics …it would be difficult to say. There is a search box on the top right hand corner of this page. You could type in the symptoms and see what pops up.

Alma, I am sorry you haven't been feeling well. What kinds of symptoms are you experiencing?

Hi I have had really bad headaches that have lasted for days. I was having problems understanding what people where saying. My left side has been hurting that is where my AVM was located in the left temporal lobe. I quit working and I am finally feeling better but I still get twinges of pain in my left side they don't last long and the moment I think I might get a headache I slow down. I will get the results from my MRI soon and hopefully nothing shows up. And please don't tell me it might be something else I don't want anything else no matter what it is! I almost didn't survive my avm rupture I had to go to speech therapy and all that. I cant do that again. So have any of you had any problems after surgery later on?

I also felt as if I was going to have a seizure. I haven't had one for 12 years now. Of course the AVM brought the seizures. I have had only 3 my whole life that in itself is frightening. I am taking my regular med again as my ins tried to only cover the cheap kind. So that feeling of having one is gone thank goodness. I have always know I need to take them for the rest of my life. But they were so strong that it was scary to drive.

I see you are thirteen years past surgery, Alma. You have had your MRI, which is good. I don't think anything we say here will tell you anything more than the MRI will. I know it is hard to wait for the results, but I think it is best to do just that and not speculate based on feedback from this website. We are rooting for you, and hope your docs get to the bottom of this soon. Please keep us posted.

One question I would ask is whether you have recently changed any other medications or started using hormonal contraceptives or therapies. Those could have an impact on symptoms. Make a list of all meds for your docs and check it twice.

Thanks! Fingers crossed.

ok thanks for your advice!

Now they want me to have an MRA done so I still don't know what is going on and I have to make an appointment with the Neurologist. I hope they are just trying to make sure everything is fine and not that they think its something. I don't want to ask until I see my dr.

Suspense is the worst. I hope you have answers soon.

Please let us know how it turns out. I'll be watching this thread with interest. I'm 9 years past surgery and generally all clear. But, your post describes my climatic concern.

I just had my MRA done this Monday June 2 that they insisted I need to have done also. Are any of you familiar with that. I have always had MRIs and real angiograms. I was nervous as I don't really remember what they did to me when they removed my AVM it was an emergency since it ruptured. They wanted to know if I had clips or any thing metal? I really didn't know. I will let you know what happens when I find out myself.

I have had an MRI and MRA done, today I got the results although my left side of my brain is fine. That is where I had my AVM removed in Jan 2001. The radiologist has found something on the right side. My neurologist says that it is small and he can't seem to even see it. I am having another MRA done with contrast dye just to make sure it is what they think it is, of course I don't know what exactly it is yet or even if it is there. Of course I always hope somehow they are wrong. And at this moment I don't want to panic. So when I get done with the MRA and get the result for that hopefully I am going to be fine. I am not going to lie and say I am not scared to death. I am. But I also don't want to fall completely apart yet. I am hoping for some good news.

Hang in there, Alma.I hope you get answers soon.

Thanks trying to be as positive as I can possibly! But I have gone through all of this before and at this point I am not certain I can stand going through this again. All I know is either the Radiologist is wrong or the neurologist is. I hope it's the Radiologist and I had so many things done how can this show up now? So I just have to hang on for one more MRA. Then I will see what needs to be done or if I am ok. Thanks for your great advice. When I had my AVM at first I never spoke with anyone about it. I will never do that again. So I will keep talking because it makes me feel better.

I'm glad it makes you feel better to talk, Alma. I have a mantra I say to myself sometimes: "Relax nothing is under control." It is really true, you know. Life just happens, we can act but there is so much that will happen regardless of our interventions. And if we can learn to accept this and relax, then we are truly secure. Easier said than done in your present situation, though...

Well here is the latest they call me to come in right away to have the MRA with contrast dye today. So I did as I am there I asked for them to give me the results from the MRI I had done on May 24 and the MRA on June 2 both without contrast. I found this (Findings: There is evidence of arteriovenous malformation in the right temporopartiel region of the brain.) I had the MRA with dye done and as I am having it done I almost have a seizure. I have't had one in 12 yrs. I will get the final results for the new MRA sometime this week. I will let you know what I find out.

Alma, it is certainly not news anyone wants to get than an avm is back after treatment. However, members who have had this happen have dealt with it and been okay. Call it a "curveball." But know that you can handle this, too, if this is what the final results are, and we can help. Keep us posted.

I still have not received the results for the last MRA. I am shocked because I thought I might have problems with my AVM surgery on the left temporal lobe. I did not expect at all that they would find another one and this one is on the right. So I don't know what to think. Has anyone ever been told that they had another one years after removing the other one? I am baffled.