what things do you like to do
and does your avm keep you from it?
how do you cope with the frustration?

i used to play a computer game competitively
now because my left side is paralyzed i can’t play anymore.

I know what you mean about putting on weight…within a month of my first surgery i put on 20 pounds and now it 30 pounds. My one year anniversary for my second surgery is getting really close and it is hard to believe that I have 2 of them. I used to love being out side and playing Frisbee and soft ball and all kinds of sports for fun but now that I think about it I have not play a sport in a long time. I have also thought about getting into yoga or something of the sort…but I think I need to get my headaches under control a little first.

I used to play sport a lot! AFL, touch, running, swimming, and now I can barely do any of them. I’m only allowed to swim now; definitely no AFL which I’m struggling with a bit. But I always try to look on the bright side and I’m still here so that’s about the biggest positive that can come from having an AVM that ruptured. As soon as I can run again though I’m going to train for the 10km at the marathon next year so at least that’s something to aim towards…

It is very frustrating…I used to always be up early, busy all day with a job & the kids and all their sports…it was our life;)
Now after the whole AVM surgery I drag myself out of bed & force myself to exercise…even tried yoga and starting Tai Chi this month. Need a Darvocet every afternoon to keep the head from aching too much. All in all…I’m getting there (Ihope) The worst was when They took away my license!!! Took a year…but got it back:)

did your surgeon restrict from swimming?
i swim competivley and my first surgeon said no but i got a dif surgeon who was specialized in avms and he said there was no medical reason y i couldnt, just to watch my pulse and not let it get too high (about 170)

Pfff weight is a big problem for me I was never slim always a big girl but these days its out of control i have gained over 40 pounds since xmas, all this siting on my big fat (and getting fatter) bum is a nightmare. i use to like swimming but I can’t even do 1/4 length as now feel like someone strapped a lead weight to my right arm but i am detemined I will get there again, it’ll just take time, and since I am not at work just now what else have i got to do ;-(

My neurologist said I could swim and walk. They’re the only two forms of exercise I’m allowed to do at the moment. But I’m going back to see her on October 15th so hopefully she’ll say I can start running etc again

ahh ok…
oo, i hate running…im allowed to but i only run when i have to for gym…
good luck!

I try to do many of the things I used to do before this continuous bleeding from the gut due to AVM in my small intestine. Maybe I should call it a name like “Vampire”. The anemia gets me real down. Once, while in the hospital for 4 units of whole blood transfusion, I was thinking so very dark thoughts about how I don’t want to live if this is the future for me and considered just not going in ever again and just fade away. But damn it all, my background gave me the widest strip in my soul to keep living inspite of everything. I know there is hope somehow. I do admit to being very afraid. My hobbies keep me going and now my job is improving. My little sister wants me to cross-stitch this big afghan (coverlet for you Brits) of hummingbirds, her favorite bird. Mine are chickadees. Such tiny birds who are so tough, survives the very cold winters and still fly with joy. I love watching them tumble about in the air. Robins are the bullies but are easily chased by the little guys. Magpies are clowns. I am tall and built like some living Valkrie or Amazon warrior (without the big bussoms) but the anemia has frustrated me so much by limiting my physical activity. I am obese about 100+ lbs about (11 stone) on a 5’10" frame. Big belly, Buddha belly. But the iron IV is giving me a better chance at more activity now. Besides water aerobics I have started cycling and later will get into weight strengthening and belly dancing. I have 1+ acre of land about my house to manage. Before all this I had planted 100+ trees (broadleaf, pine, fruit, nut and everygreen) besides other things. My older brother, Mike, helps (he has hydrocephletis(?) which I heard may be caused by AVM on the brain). His showed up in '77 when he was working on a missile as a soldier and he fell with passing out. Luckily he was in the military and so he is retired with the VA paying for his treatments and surgeries and a monthly stiped since he isn’t allowed to work. The bills are like over $1M but the government pays for it all. And he can go to Salt Lake for the nearest VA facility for his treatments. He is married to a real stupid woman (IQ of 90 whose family deceived mine with lies) and they had three kids who are the lazest bunch I have every met (and they beget 5 kids). That is another story. Together, my bro and I, we support each other. The other siblings aren’t so understanding but hey, maybe they will have something similar and they can join the club. I really would not like that, I won’t wish this on my worst enemy (but maybe again I would on Osama, hah, ha). Just so tired of this weakness. I sympathsis with you others who have AVM on/in the brain. Those headaches and the seizures and such would really cause me some real depression. Take up hobbies, do something to give yourself a vent or expression when things get you down. Have to have something to do other than dwell on the health issues. Hey, I am re-studying my college courses, talk about headaches from doing the analytical math. But it is fun to know I live.

Camille who is 9 years old has alot of frustration about all the things she can’t do- no gym and recess at school. No running, jumping, no sports- you all know the list- and it’s all the things a normal 9 year old gets to do. Imagine being nine and knowing that you could fall and it would change your life forever! We try to focus on the positive-like the fact that she is still with us! And we try to find nice quiet things- like drawing and painting-great outlets to frustration by the way. Plus she loves TV- can you imagine being able to beg your child to be more of a couch potato? We also have discovered the Wii-which allows Camille to play any sport she wants. We are on a desperate search for a Wii fit- she wants to ski with it!

i am a huge shopper and being in the hospital for 6 months definately saved me money. now i have found shopping on the internet.

School was always my relief. It still upsets me that my AVM had to blow senior year. It ruined a lot of high school, but why did it have to take away that little piece of paper? Now though I’m full of hope that a degree may be within reach. Anti-seizure meds make me think slower, so it is a bit more work.

I practice yoga and actually enjoy it much more than I did before my bleed. Find yourself a class! Keep in mind that they’re are many different kinds of yoga and lots of different kinds of yoga teachers, as well. Some instructors (more than I’d like to admit) take themselves very seriously and make you wonder if they practice what they preach. If you ever feel like you took a class with someone like that, move on! but don’t give up on yoga. They’re are too many amazing, encouraging teachers out there to waste your time on one who’s busy listening to themselves rather than your needs or your body.

As for types of yoga-- yin and hatha and less intense (yin being “restorative”), ashtanga is pretty intense (I’ve worked my way up and now really enjoy that style, lots of movement), and vinyasa (or “flow” – movement with breath) and anusara styles are somewhere in the middle. Anusara (also called “heart yoga”) classes are becoming more popular because of their focus on natural body alignment and bringing joy to your practice. Anusara teachers are usually balls of positivity. I smile just thinking about mine.

Yoga’s not going to change your body overnight but I noticed a difference in my body by the end of the summer when I upped my classes to three a week. I find I stand up taller, sleep better, wake up feeling better when I practice. My roommate is a tough girl who’s had her share of health problems most of her life. she took her first class this summer, cried at the end of it and fell asleep outside in a chair for three hours afterward (in the florida summer heat). It was a cleansing, healing experience for her. I’ve had similar experiences but none as intense.

I think yoga is a good idea for people in our situation. It doesn’t get our blood pressure too high but it does increase muscle tone and flexibility. And a good yoga teacher will tell you in the beginning of class that it is not a competition with yourself or anyone else. But most of us have already learned that in recovery. ; )

Sorry to give unsolicited advice but I haven’t been able to go back to all my former activities, either (or former body) and like to encourage people to give it a shot because I’m glad that I did.

YAAAY! I went to yoga last night. It’s usually no more than 6 people but no one else was there so I got a private lesson. It was wonderful.

Hatha should relax you before bed. I wish you well! Big smiles!

Namaste ; )

technically it means “the divinity in me recognizes/bows to/respects the divinity in you”

the teacher usually says it at the end of yoga class and the class says it back. (here’s my secret- I teach sometimes) It’s a word of gratitude. I tell my class to draw intention into the word before they say it and internally thank themselves for coming to class (for doing something good for their bodies and their minds) and thank the rest of the class for sharing their energy with us.

hi again my son always used to play his playstation and cant because of his left side,he now plays a nintendo ds lite,some games only require one hand and he enjoys this.i hope it helps!!!