In need of better understanding

Hi everyone,

I had a brain AVM bleed on Dec. 6,2009 and underwent an immediate craniotomy that night. I remember very little from the hospital and rehab, so I’ve mostly relied on the medical documents my mother received when I was discharged. Anyways, I’ve been having a lot of stroke-like symptoms since then: temporary numbness or tingling in the arm and leg, occassional blurry vision (more than what I already have because I have slight blurry vision and field cuts), and pain behind my eye. There was one time where the left side of my face had a numb feeling for over 10 hours. There’s also been a few times where I’ve had these very quick sharp pains in my head in the exact area of surgery. I had fear for the longest time that I would have another stroke. The procedure that was done was complete obliteration (or a complete removal of the AVM) and they put a clip in my brain, so I am AVM free. However, I know that the AVM caused an aneurism that led to the hemorrhage, and so I did some research. I found this medical journal where they said that it is unclear why, but that even after a complete removal of an aneurism an aneurism can still develop over time. Here’s the link to it=

I have abnormal blood flow because of the clip they placed in my brain after surgery (they did an ultrasound test), and one of my neurologists said that it is likely I could have another stroke because of that clip. My neurologist also said that I have simple partial siezures according to my latest EEG test and he has me on 1200 MG of medication. He thinks that the symptoms I experience are a result of the simple partial siezures, but how the hell would I be able to tell the difference?? What if they are stroke like symptoms and I’ve mistakened them for “simple partial siezure effects?” How will I know when I should really be worried and go to the hospital and when not to be?

It’s driving me crazy thinking about all of this, and I was just wondering if anyone has experienced something similar or if anyone has already went to a medical doctor for the same issue, and what did they say?

Thanks a lot! I really appreciate it!

Hay, I don’t have any answers for you. I do have seizures and they are called facial seizures and they are like mini strokes on my right side as well as I and can’t talk, they can last up to 15 - 20 min with me if it lasted any longer I guess I would get to the hospital to make sure all was ok,

Kia Kaha Tiaki (stay strong and take care)


I hear a lot of people on here talk about scar tissue problems. Perhaps this is the source of your pain. Best descriptions of types of seizures I found on this site…
Don’t forget…
Carpe Diem!

The best person to set your mind at ease about partial seizures vs. stroke symptoms is an epileptologist. This is a neurologist specializing in epilepsy. All neurologists and neurosurgeons will say that they treat epilepsy, but in our case, those types of doctors have made huge mistakes. An epileptologist will most likely be able to tell you whether your symptoms are seizures or whether you should go back to your surgeon, and they might want to talk about switching to a different medicine that can give you better seizure control or fewer side effects.

If you follow Barbara’s link to the Epilepsy Foundation, you can find contact info for the nearest branch of the Foundation. You can call and say you’re looking for information on epileptologists in your area. They will know the doctors who work with their clients, the doctors who are on their board, etc.

Trisha, what I would write is exactly what Barbara and JH sent. I just found a neuro that specializes in Epilepsy. She hasn’t called me yet with an appointment, however, going to my current neuro doc has not helped my issues, so I’m excited that I’ve found a epileptologist in my area. Let us know if you find a great one in your area! Keep the Faith!

Thank you all SO much! I’ve copied and pasted some of the information you guys have given me and I will definitely be looking into it all. This stuff has been driving me nearly insane so I’m really grateful to have gotten some responses!! I will let you know what information I find out whenever I end up getting an appointment. THANKS AGAIN!!! Sending big hugs!

Hey, I know this sounds easier than done, but don’t worry too much. You may be struggling with the emotional worry and stress as much as from the AVM/surgery itself! Give your mind and spirit a chance to heal. I too have those terrible apraxia (sudden pains) near the location of AVM, and get so nauseated and headaches that I have went to the hospital expecting to wake up three days later under a knife with a major bleed.

But worrying about it 24/7 is not the way to go. Listen to your heart, but not your fears. The moment I decided to stop looking at MRIs, arteriographs, all the sites on AVMs, and live life, I began to heal faster. Not that your going to stop worrying 100%, but I’m talking OCD behavior with your ordeal…not healthy. If you look at my posts, I am worried about some very important decisions, and taken in stride with good information and help from others, I feel like I am doing what I can, and allowing God to what he can too.

I made a list of goals and ways to deal with my fears when they came, or when symptoms came very strong, and they are as small as ‘take a long bath’ or ‘clear your mind and count your blessings’ and so forth. I just hate to see you get to the point I did and worry so much that you can’t heal. Talk to others on this site, and many will say the same…keep balance in your life, keep balance in your emotions, and that may mean taking a ‘break’ from all the health worries and woes… Hope any of this helps.

Thank you so much for the link on aneurisms developing over time even though fully removed.
As a mother to a (then) 7-year old boy who had two avm ruptures in March 2011 and barely survived, this has been my greatest fear. We live in Norway and my feeling is they don’t know enough about this condition over here as it is so rare. (We are a small population in Norway).
My son’s avms have been completely removed and clips have been put in and we have been told that everything should be totally gone now. But I can’t relax knowing that these horrible things can come back! I am forever grateful to find links like yours in order for me to put more pressure on the doctors in charge of my son’s follow-up in the years to come.
Thank you;o)