Things are worse then they expected

My AVM was found by accident after I was in a car accident. My first surgery which was an embolization & an angiogram showed my doctors that my AVM was worse then they thought. It is fed by 3 major arteries & was actually pulling in so much blood that the rest of my brain wasn't getting enough blood flow. Also so much blood was flowing in that there was enough veins for the blood to flow out that the blood in my brain was actually flowing backwards. After my first surgery, which blocked off 40% of the blood flow to my AVM, I felt very dizzy & out of it. It was hard for me to focus on the conversations that I was having with people. I don't remember much of being in the ICU & much after. My doctor told me that he wants to do another embolization before he cuts my AVM out in order to make things safer for me. On Tuesday May 29th, I woke up with a really bad headache, so I decided to go back to bed. I woke up to find my grandmother standing over me telling me that I had a seizure & that the ambulance was here to take me to the hospital. At the hospital I had a CT scan done, & it was normal. So on Thursday May 31, I went to speak to my doctor about what was going to happen next. He said that I need to drink lots of fluids & to take it easy. I am not allowed to drive for at least 6 months. I was put on 1000mg of Kepra twice a day. My doctor told me that I should be on the anti-seizure meds for at least a year after my brain surgery that is if I don't have anymore seizures. Unfortunately I just don't know what to think because I am just trying to graduate from high school. If anyone has suggestions on how they are dealing with their emotions please let me know. I am extremely lucky to have such an amazing family supporting me with friends who care so much about me. I am just having trouble dealing with my emotions of seizures & my up coming surgeries & I am interested in how other people are dealing with their problems. Thank you for any suggestions.

Hi Mickey. There is a sub-group here you may wish to join…http://www.avmsurvivors.org/group/teenswithavms
Lots of members here are on Keppra.

Mickey, I'm on Keppra (the generic brand). I take them as suggested by my neuro doc, on time twice a day, as recommened by the doctor. Please don't stop taking the med unless you see your doctor. I only cut back on my med 2 years ago and I had a grand mal seizure...so you I have to follow your doctor's suggestion. Hang in there Girl!

Kayla,

I think one thing to recognize (and allow) is that it’s NOT easy. It’s not a fair situation, it’s not fun to have restrictions, and it’s especially not cool to have this sort of thing when you’re young and just want to enjoy life. But, am I to understand you have not had your AVM totally removed yet? I have not yet either, but what keeps me going is the thought that, once it’s removed, once everything is said and done for, we can be normal again. Yeah, we can’t drive, or drink, or exert ourselves too much…but it’s temporary. And these are all choices we get to make. I could go out and down a bottle of Jack with my seatbelt off and Thunderstruck playing at top volume down the highway if I wanted to! It wouldn’t be a good choice, but it’s within my power to do so. Just like you, recognize that you COULD do these sorts of things if you wanted to, but the idea of restrictions is to keep you safe from yourself, not just to make life miserable. I am trying to come to terms with this myself! But you know, there might be opportunities to learn more about yourself during this time. Like me, I don’t get to draw or read as much as I would usually like. Since I’m supposed to be taking it easy (no heavy lifting or running, at least for awhile), I now have the time to try doing more of those artsy things.

Never underestimate the power of taking a walk, either. Since your AVM is more serious, you might want to find a walking buddy first, but you really get a different sense of the world when on your own two feet, rather from behind a steering wheel. Who knows, maybe that’s just the medication talking! But you know, someday you won’t have to take anymore pills either, and you’ll be back to normal. Not everyone with life-affecting diseases gets to say that. In a world where people get burned, maimed, shot, sick, and many other things through no fault of their own, having something that doesn’t show outwardly is kind of lucky.

Hope this at least helps some!

Wow! I don't have much advice! All I can say is that, from my own experience, keppra is a b***h of a friend to have. I hate her LOL. I had a seizure some 4 months after my crani. I'm on 1000mg 2x a day and like everyone else I found that taking it on a schedule has really helped with the emotional instability I feel is caused by the Keppra. You are very lucky to have your family and friends. You should only surround yourself with positive people; people that encourage you to work hard and steady at getting better but don't persecute you when you need to take a break, that is a part of what real support is (in my own opinion).
I know you want to graduate high school (we've all been there) but don't overwork yourself to make the deadline. I'm sorry you have to focus on surgery and seizures instead of whatever high school people are thinking about (I just made myself old) but like one commenter said "there might be opportunities to learn more about yourself during this time," which is essential for the next stage in your life regardless of any medical conditions you may or may not have.
Good luck!

Its hard i wont lie or sugar coat it...BUT you need to stay positive and be grateful for everyday you have on this earth. Live life and stay around the ppl who keep you smiling and really love you.

Hope it all works out for you and keep us posted please. God bless

I don't know what it's like to deal with my AVM while attending high school, but I can understand haw hard it may seem. You do have to stay positive and I compleatly agree with only surrounding yourself with people who are supportive, the rest will just hold you back. Although I did go through grade school fighting cancer (2 1/2 years of chemo) and a brain biopsy while in high school. I was a slow learner (not literally :) )I didn't learn to shakeoff the ones pulling me down until I had to deal with my AVM (as a mother of 3). Keep your family close they they do love you, even when you feel they may be sufficating you-they just want to be there. You just deal with it one day at a time, take lots of walks and "look" at life all around you, it's beautiful. You will learn a lot about yourself during this journey, wish you the best.

Hi, Kayla. I know how hard this all is to deal with. I think that Chris gave you some really good advice.

i thinks it's very important to remember that you're not alone. There may be times in the future when you feel like no one understands what you're going through. Don't keep it bottled up inside...it can really eat at you and lead to some mega pity parties (I've held more than a few for myself! lol). We are always here and someone will totally get what's going on with you. We can give advice or just be a shoulder to lean on when you need us.

I don't know if you are religious, but I have found prayer very comforting. I also try to keep my mind occupied when I'm feeling overwhelmed with things like crossword puzzles, reading, soduku, Facebook (I'm addicted to Pioneer Trail!), scrapbooking, and long walks.

Well after my second embolization which my doctor said went very well all I can think about how the big surgery is just getting closer & closer. Luckily my family have been there for me through every step. I do thank everyone who has given me advice & to allow me new ways to look at things. It really does help.

Glad to hear your second embolization went well Kayla. Is there a reason your doctor has spread out the dates of your surgeries like this so far? My doctor has scheduled me for an embolization, followed by a craniotomy immediately the next day to remove my AVM. Personally I don't have a problem with getting it all out of the way all at once, but I just wondered if there would be a good reason to separate the surgeries.

I'm kind of worried about my big surgery coming up too, but I just try not to think about it. Instead I think of all the stuff I want to get done before that time, since I'm going to be in recovery mode for a good while after. "Keep yourself busy" is the best advice I can offer. Do homework, hang out with your friends, enjoy the summer weather with your family... you know, normal high school stuff. :) The surgery will happen when it happens, and worrying about it won't change that. Run your life, don't let it run you. ;)

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