Last year on the 23 June - my life starts to turn upside down, when I had my luckily first and last Grand-mal seizure...followed by ct, EEG, MRI , angio and finally craniotomy for my big AVM. All seemed t be well - untill my first follow up check - MRI on the 6 June this year, on which my Neurosurgeon seemed to see a big drining vein again and ordered another angio to get sure. U can imagine, that I was terrified - coz I thought this chapter of my life was done. I was also terrified from thinkin about another treatment or even another crani again...now that things turned out to get a bit back to "normal" again after 8 months.
Had this angio yesterday - and - the radiologists told me - no chnage from the angio post op - which means - I am AVM free still. U cannot imagine how lucky I was hearing that. So - its a double shot for me - 1 year seizure freee - and finally AVM free !!!!
Congratulations and God bless...im happy to hear the good news
Manux, that’s great news!
So happy for you!!!
We were advised, once my husband was AVM free, to get copies of the lastest scans on CDs. This way, any subsequent scan can be compared to one that you know is clear. If you change doctors or hospitals, you can take the baseline, AVM-free scan with you. It helps prevent a mistake in the future...if someone thinks they see a draining vein again at some point in the future on a new scan, they can compare and see that that's just how normal looks for you!
We called the one-year mark his "brainiversary." I hope you are celebrating!
One for the inspirationals! Congrtulations Manux!
Congratulations, Manux! Isn't knowing that you are AVM-free great!
Hello Manux- you may still be celebrating...as newly diagnosed I can just imagine how it feels to be on the other side of the treatment "mountain". Did you have any symptoms prior to your seizure? Have you had any recovery of deficit since your treatment. I'm trying to gather information to help in deciding how to procede with my avm...i am 65 and newly diagnosed(pre rupture) much as you were....had an mri ordered my an ent to check for tumors and ms....once again, congrats on the craniversary....bballokie
That's great news!
Congratulations, Manux!!!
Good health & best wishes to you.
Thank u so much XXXX
Thx yes - even we can get good news at timees, take care pls xxx
Yes I think u´re right - maybe this is how my brain looks now - but its just normal.....Thank u xxxx:))))))
Thank u so much xxxx
Thank u :))))))) xxxx
Thank u so much, i am happy....itds a good feeling, xxxxxxx
Thanks so muc, same to u xxxxxx
Hey hey...I know how u feel newly diagnosed - its no easy thing to deal with - but somehow we AVM ers are all great and strong fighters and Im sure it will be all well for u - I nrver had any symptoms - only this one seizure - I mean at least i dont know if I had symptoms - could have been everything or nothing....I think I didnt have some. And since my crani its not like before - im partially blind on both sides to the lower left and have some mental issues too - moodswings, anger, anxiety - such things - and - Im sooooo tired at times ... but I can live with that - i have to - so i try to make the best of it - why worry - it doesnt help- so - best advice for me to u i s- stay positive , even if its not that easy at times - and take care pls XXXXXXXXX
Yes indeed - thx xxxx
Thank u so much xxxx
Good news! I can't wait to be avm free!!!!