It has been a year after my surgery and I still feel bad!!! My avm was at the left temple lobe. Everything is like a dream, Im get angry very easily and still have headaches. Everyone ask me how you feel and I cant explain to them. Its like my head pulse I get dizzy, like I see my mom, my girlfriend or friends and they seem like I don't know them but I know who they are. Weird!!!!!!!!! """WHY!!!""" I have small seizures (but doc. said that was normal after a year. Just wish I was normal again.
I am also one year post-surgery. My AVM was right temporal lobe. I had a massive bleed March 2011 that caused left-sided weakness which is most likely permanent (I know I'll never be 100% again). But I have a lot of the same questions. Why do I still blow up randomly? Shouldn't I be past this stage of "recovery?" Why do I still get dizzy when I bend over? I ask my Dr. some of these questions when I'm not in some memory reducing fog but the answer is always the same, no matter the question: "sometimes these things take time. The signs of recovery eventually go away and sometimes they are permanent." I have no idea how long one year is in recovery time but I feel like it's been long enough. I know how you feel...i wish I was normal again, too.
Why? Because they don't know enough about the brain to give us the answers. My AVM is on the left temporal also. While I am only 5 months past my surgery, I was told that it was not responsible for my all of a sudden "mood disorder" that I did not have before my surgery. All of my symptoms, the dizziness, the visual disturbances, the migraines, having issues working my job, etc., they look at me dumbfounded and say, "boy, most patients go back to work and have no issues, we can't understand why you are having all these problems." Now I have seizures that I never had in my life until my surgery. But it's all caused by this avm that I never knew I had. Wow docs, really? It never bothered me until you all fried it. Now it bothers me everyday. Thanks guys!
Hi Eford - It will be 4 years post bleed for me at the end of July, and things are still changing (and WAY different) for me. I read somewhere on here that changes can occur 6-10 years post surgery - I think of it as a marathon or journey and not a sprint or a destination.
Erford,
I've always stayed on the positive side of things, but yes this thing is more than frustrating. I'm going on 6 years post surgery when October rolls around. They say they got it 100% which is a good thing but there were side effects from the surgery. It's the brain, and they really don't have all the answers (to steal from Zilly74). They told me I would go back to work in three months, yeah no. I wrote this response under Zilly's response because before the surgery I never experienced a problem and was very active. Not so much now. At first I did a lot of thinking how it used to be (had a career, built a home, had a lot of toys, etc.). But you know what? As much as it stinks to have this AVM experience, it brought a lot of positive things to my life. I just had to recognize that, and it’s a really hard thing to do. It takes time, because the alternative is just not an option. Best of luck to you (and you too Zilly74!). Heck, best of luck and much love to everyone. :J
Eford..It will be 6 years on December 24th when I had my brain bleed..also on my left temporal lobe. To be honest, I don't remember much about the first year after my bleed, but what I do know is that while it is a slow process, it keeps getting better over time. Hang in there. We are here to support you whenever you need us!
Thank you everyone!!!! I'm sorry I'm like poor me and boo hoo, but needed to know if anyone else has the same problems. I'm just glad we all came out of it and get to see the next day!!! I look at life in a total different way now!!! Thankful and grateful I had a good Surgeon at Duke!!! I was miss diagnose for 3 years till I went up to Duke!!!! Almost didn't make it!!! But just wish I felt better but it could be worst!! There are people on this that have it way worst than me and my thought and prayers are with you all. Thanks again everyone and to the person or people that put this web page up!!! LIFE IS GREAT NO MATTER HOW BAD IT GETS!!!! Just go out side somewhere with a great view and look how beautiful the world is! The mountains or ocean or park and all the animals (maybe after you have taken your pain pill!! just kidding) :-) and just watch and be thankful your here to see it!!! Thanks again and we all are very lucky and to those that going to have surgery or just found out you have a AVM - your going to make it and everything will work out!!! I was just wondering why I feel the way I do. Its better than I felt before my AVM!!!!! TAKE CARE EVERYONE! Prayers are out there for all of you!!!!! ERIC FORD :-)
Hey hey - I know how u feel - I had my AVM right temporal and I am almost 9 months post op now - and Im sometimes better - sometimes worse....can i ask u - u say u have smalll seizures - how are they and did they test it? I hope for u it will all get better soon - Im sure it will - I think the thing we post-surgery patients need most - is patience -with ourselves and anyone alse....its not easy..and the worst thing about t - in my case at least, are the expectations I have for myself ...i still stress myself too much.. shouldnt do that - but its not that easy to get the Old me and the new me together.....take care pls XXXX
I know how you feel too I still have mine but they can't take mine out i am getting ready to start radiation mine is in my left tempral lobe and I always feel like that on a daily so I think it is normal for a year past your surgery that really isn't thaat long to adjust when your brain is used to having it and usually feeling like that it needs time to adjust . my docs even told me if there is a chance that without surgry they might be able to get rid of it i might feel likethis for a long time after even when it is gone so I think it it sucks but it is normal.