Cerebral (Sulcus region) AVM and Jacksonian Seizures

General
#1

Hi everyone,

I am just looking for some advice or possible clarity.

My AVM is as described in my angiogram "Large left parietal arteriovenous malformation: With a nidus measuring approximately 2 cm in maximum dimension. Dominant feeders via right MCA insular branch. Further feeders via smaller right ACA branches. Cross filling during the left internal carotid and vertebral injections via ACOM and PCOM respectively."

I have no idea what all that really means. The neurosurgeon has mainly spoken about treatment. He has ruled out Embolism and surgery, which only seems to leave radiation :/.

They also discovered I have a 2mm PCOM aneurysm and the conclusion was "Conclusions:Right superior parietal arteriovenous malformation with a nidus estimated 2 cm and no evidence of deep venous drainage. Allowing for the position and the size of the abnormality, this is most consistent with a grade 2 cerebral AVM as per Spetzler-Martin classification"

It is all very confusing for me and I guess the one BIG positive is there is no deep venous drainage?

I have had 1 seizure since the angio, which I was informed is called a Jacksonian Seizure, where my left arm and left side of my face felt as if I had no muscle tone what so ever with numbness and facial drooping (almost like I had just had a stroke). I am on Keppra 500mg twice a day and have been for some time now.

I found during the angio I had a VERY intense stabbing headache, which I was informed is normal however these are the same types of headaches I get on a daily basis they last a few seconds and are quite sharp. I have also had the feeling of pressure as if my face is swelling.

I do apologise for being all over the place with this post. I am just not sure what is normal and what isn't, I would seek the help of my GP however he has retired and I am not quite sure I feel comfortable with the new GP as yet.

If anyone is able to help I would be extremely grateful.

Thank you

#2

Hi, shannski, I'm not sure there is a "normal" with avms. They are abnormal to begin with, right? No deep venous drainage is good news, as deep venous drainage can raise the risk of an avm recurring. Stage 2 is also good news, as is 2 cm. Not too large or too far progressed to be unmanageable. Get several opinions before deciding on a treatment plan, and ask the neuros to "translate" your results to you and what they might mean for your prognosis. They should take the time to explain things and answer your questions.

#3

Thank you Dancermom. My next appointment with the neuro is in May, I am still waiting to hear back from the oncologist (hospital that found my AVM with MRI are not answering his requests). I think that is what I am struggling with most at the moment is all the waiting for answers.

#4

I got a call the other day from the Oncologist, He had been speaking with my Neurosurgeon and they decided that radiotherapy is the way to go. So on Thursday I go in to be measured for my mask and have another MRI as last was done in October last year.

The ball is rolling and rolling fast!! I am unsure of what to expect with the radiation, but I am hoping the oncologist will talk to me about that. He has also requested I take Miss 12 with me so he can tell her she needs to be nice and look after me lol. (She is being quite the typical pre-teen hormonal Miss)

Does anyone have any suggestion as to what to so after the radiation?

#5

lol.. I think I like your oncologist already :)

#6

LOL he seem pretty nice, has already been soooooo helpful.