I am new to this site. I just recently found out that I have to have surgery to remove my AVM. I have no idea what to expect and know that everyone's situation is different. I am nervous what I am going to find out and going in for brain surgery.
I have heard that someitmes you have to be awake for this type of surgery? Also Iwas told that with this surgery that my seizures should stop as the AVM is the reason for my current seizures. Does anyone have any advice what I can expect and has anyone been seizure free after a surgicial AVM removal?
Any thoughts and advice is greatly appreciated!
Hi Amanda. I just read your other comment about having Grand Mal seizures. Yikes...you have been through a lot. I did not have seizures before my bleed. Luckily, I did not have them after surgery either.
Since the meds are not really helping you...I'd say you do not have much of a choice in this matter.
As far as surgery goes...expect to be tired for a long time afterward. However as my Mother always says...this to shall pass!!
Hello 'Amanda, welcome to this great site. As you said, every AVM is different as in the size, the depth etc, etc.
Personally, I have never heard of anyone being left awake through a crainiotomy, I know that I waas asleep for the whole time and for time afterwards.''I wish I could help you more re: seizures as I didn't have any before surgery....again, just gotta fimd out after it's over I'm afraid.
Try not to worry too much (I know it's hard not to); if you have faith in your surgeon, let him guide you through your fears before surgery as this really help you. Tale care Amanda, my thoughts and prayers are with you, Lesley.
Hi Amanda I had a seizure 4/29/04 and that is the reason I had a CAT scan and discovered my AVM.I have had 2 embos and Gamma Knife 1 time.I havent had a seizure since.I am on Dilantin and have been ever since my 1 and only seizure.I also didn’t have crainiotomy either I don’t know if that makes a difference.I wish I could be more help to you.
Hi Amanda I am going thru surgery on the 15 of March a little scared I was not told I would be awake or be woken up during the procedure. Just that it was six hours long. I’ll be sure to let you know how it goes. I don’t know where yours is located but my AVN is in the right frontal lobe. Tonna
this will make you feel better have my Crainiotomy march 1st im home at march 4th and yes you will be tierd but and head pains just stay positive and have faith before they put you to sleep just think of happy things and i ask ny nurse what is this stickers on my arm is like 4 of them she told me thats how many time they wake you up i said wow i dont remember anything. Hope this help you some you will be in thoughts and prayers stay strong
Thank you everyone for your comments, replies, and posts. I did find out that I will be asleep for this whole procedure; which for me is a HUGE relief. I am scheduled to go in on March 21st for a cranitomy. That is as long as all of the other tests go as planned and results come back good. I had blood work done yesterday, go in for an angiogram on Wednesday (which doesn’t sound too enjoyable and other preadmission testing that day, and then an MRI a week from tomorrow.
At least you have a plan now. I will be praying for you!
Amanda, I’m a little late with this, I somehow just saw your post, so sorry! I’m glad you found this site before your surgery. Lots of wonderful people to offer support and answer questions. We’ll all be thinking of your on the 15th. Please let us know how you are doing once you are able. Good luck!
HI, WELCOME TO THE SITE I WILL BE PRAYIN FOR YOU ON THE 15TH AND WILL BE WAITIN ON YOUR REPLY TO LET US KNOW HOW YOU DOIN STAY PRAYFUL AND GET SOME REST ONLY A FEW DAY’S LEFT TAKE CARE GOD BLESS
I too am a little late commenting on this but I'm glad I was able to post this before the surgery on the 21st. I had a brain AVM removed back in late 2006, it too was in my brain and was about 4cm large located to to my brain stem. I can relate to what you're feeling but I digress... All you can do at this point is trust in your doctors, stay positive and sleep a lot. Not too difficult, right? :-)
A lot of people are pulling for you and I don't know if you believe in this, but a lot of people are praying for you as well. This is an awesome site with some fantastic people are on here that "get it" or have been there themselves. If you ever have any questions, concerns or just need to reach out for a little support - please don't hesitate to ask. Good luck with the surgery.
So the angiogram wasn’t as bad as I thought it would be. It did hurt some but the pain meds helped a lot. I know this should be the least of my worries bit after all the doctor appointments it sounds like I have going to be losing a lot of hair when they shave it off. My hair is down to the middle of my back and I am going back and forth on whether I should cut it short or not??? My AVM is on the right back side of my brain. Has anyone been able to keep their long hair after surgery and cover up the shaved spots? I would rather get it cut off before I have staples in my head. Thanks again for everyones thoughts and prayers. I will post an update after surgery next week.
Unfortunately the surgeons cut it whether you want them to or not. Something about lack of infection or something.
:-) The good news is that it grows back. But hey short hair can be cute too! I'm Hungarian and SNL even had a skit about how... um... hairy we are...(and I'm definitely not an exception) point is that it grew back really fast and I really didn't notice it at first. I really think it depends on where they are doing the surgery though. But it never hurts to relay your anxiety to the surgeon. That may help. Good luck again and keep us posted!
So the angiogram wasn't as bad as I thought it would be. It did hurt some but the pain meds helped a lot. I know this should be the least of my worries bit after all the doctor appointments it sounds like I have going to be losing a lot of hair when they shave it off. My hair is down to the middle of my back and I am going back and forth on whether I should cut it short or not??? My AVM is on the right back side of my brain. Has anyone been able to keep their long hair after surgery and cover up the shaved spots? I would rather get it cut off before I have staples in my head. Thanks again for everyones thoughts and prayers. I will post an update after surgery next week.
HI, I CAN SAY THIS ABOUT THE HAIR I WOULDNT CUT IT BECAUSE IT'S LONG, THEY WILL SHAVE THE SIDE WHERE THEY ARE GOIN TO CUT AND LIKE MOST OF THE WOMEN WITH LONG HAIR ONCE YOU HAVE HEALED YOU WILL BE ABLE TO GET A STYLE THAT COVERS THE SCARE SO DONT EVEN THINK TWICE ABOUT IT, IT'S REALLY NO BIG DEAL, I WILL KEEP YOU IN MY PRAY'S FOR NEXT WEEK AND WILL BE LOOKIN FOR YOUR POST WHEN YOU ARE FEELIN BETTER. GOD BLESS KEEP THE FAITH.
HI, AMANDA WELL I DIDNT HAVE ANY SEIZURE’S BEFORE MY AVM WAS REMOVED AND THANK GOD I DIDNT HAVE ANY AFTER MY SURGERY, I WAS ON KEPPRA JUST IN CASE BUT I DIDNT HAVE ANY THANK THE LORD, WHEN YOU FIRST COME HOME THEY WILL GIVE YOU SON ANTI- SEIZURE MEDS TO MAKE SURE YOU DONT BUT IF YOU DO MAKE SURE YOU LET SOMEONE KNOW CALL YOUR DOC RIGHT AWAY BECAUSE HE MAY HAVE TO CHANGE YOUR MEDS. KEEP THE FAITH IT’S IN GOD’S HANDS AND HEALED ME I AM SURE HE WILL DO THE SAME FOR YOU.
I never experienced seizures before my AVM bleed, just migraines. I had the GammaKnife procedure. I was not awake during it, because I was sedated. I would receive anti-seizure medication after my procedure for two days, but the doctors never officially prescribed anti-seizure medication after they discharged me. I would get a seizure seven months after the GammaKnife. I would take anti-seizure medications for the next eight/nine months, and I've been seizure free ever since.
I am aware that almost every AVM is different, and almost everyone has had different experiences with their AVM and surgery and recovery.Things may be different with the Crainiotomy. Good luck with your upcoming procedure.
Just wanted to give an update on how everything went. My surgery went well for the most part, took 5.5 hours in total. After surgery, I was told that I actually did not have an abnormal blood vessel, it was a tumor. They are doing more tests on the tumor to see what, if anything else will need to be done but the inital results did not show as being cancerous. I had surgery on Monday the 21st, and was able to come home on that Tuesday the 22nd. I am still recovering and actually just had a partial episode (not a full blackout seizure) yesterday. I go in for a follow up visit next wednesday, will be getting the stitches out of my head and also go in for a CT scan. Besides headaches and migraines since surgery, I have noticed that I am having issues with my eyesight. I was told this is common because of where the tumor and surgery was performed was close to my vision part of the brain.
Also I want to apologize if this doesnt make sense or is really scattered written, as I am having problems focusing and being able to read full sentences.
Amanda you did just fine. I was wondering just the opposite of how quickly you posted an update after your surgery. Glad you’re home. I can’t advise on the eyesight thing because everyone’s surgery is a but different based on where the AVM was discovered (focus on those who had brain surgery) but vision problems and some nausea is common I’m told. Good news is they subside. Hang in there girl… you’re doing great!
HI AMANDA YOU DID JUST FINE WE CAN ALL READ WHAT YOU WROTE, SO GLAD YOU ARE HOME AND FEELIN WELL ENOUGH TO EVEN TYPE THAT MUCH NOW GET OFF THE COMP GO GET SOME REST WE WILL BE HERE WHEN YOU ARE FEELIN BETTER. GOD IS GOOD ALL THE TIME AND ALL THE TIME GOD IS GOOD. TO BLESSED TO BE STRESS.