Since my surgery in March 2011 I have gone back to work was doing great for a month. But then severe depression set in over everything that has gone on since the diagnosis of the AVM and everything that I had to go thru. everything has finally sunk in and i am trying to deal with it and it has been really hard. Its hard to look in the mirror and see the scar going across my head and alot of what ifs run thru my head and I start to cry. I seem to alot of that lately. The head aches are back I can barley touch my head because its painful it hurts to brush my hair. The migranes are 10xs worse than what they where before the surgery. My life is now consumed by pain. I have been seening my nuerologist and has started me on new meds to help control the pain and the increase in seizures that have started occuring. i feel like my life is in a tail spin and i have no controll. I can no longer drive and am losing my independence! I can’t seem to catch a break since all of this has started to happen! will this ever be over? I’m tired of the pain and crying all the time. I just want to be the person I use to be. I miss her!! Thanks for letting me vent! I jsut need someone to listen and hopefully understan. I hope everone else is doing good. Love and prayers your way!
Try to keep strong! At least you are alive to fight! Hopefully things will settle down!
Tonna, I recognize a lot of the feelings you’re describing, and I’m sorry you’re going through them. If it helps at all, keep in mind that a few months is still very early in the recovery process. We all want to snap back, and I think sometimes the doctors encourage us to think that we will, but the brain has to take its own time. I bet that you’re going to see more progress. There will be plateaus and steps backward along the way, and those might be very disheartening, but you still have a long time before you have to think about the endpoint of your recovery. Does that make sense? I mean to say that there is a very wide window of opportunity for you to recover further. Traditionally, doctors call recovery complete after two years, but recent research has shown that people recovering from brain surgery still see improvements happening for many years after the operation.
If the new pain and seizure meds don’t give you the results you want, you might want to ask your neuro about sending you to a “specialist’s specialist”–another neuro who focuses mostly on migraines and seizures. (An epileptologist might cover both–migraines and seizures have a lot in common, neurologically.) Your doctor won’t see this as a criticism–you would just be looking for someone who focuses all their attention on a small number of conditions, and therefore has time to keep up-to-date on the most recent research. My husband saw a HUGE improvement when he switched from an ordinary neurologist to an epileptologist.
After my recent (non-AVM) surgery, my scar bothered me a lot more than I expected…it was the look of it, and all the doubts it put into my mind about whether I would recover or not. I think Mederma helped since then, and I’ve tried rose hip oil, too. Keep it out of the sun (or use sunscreen) to help it heal. If your hair’s not back yet, don’t worry–it’ll grow!
My mom likes to say, “Don’t borrow trouble,” and I’ve found that to be true…try not to entertain the "what if"s as they go through your head. As much as you can, focus your energy on what you need right now.
JH-- tHANKS FOR THE PEP-TALK, i needed that too. i too am 2 years post-crani. as of the 18th, and I find everyone standing around me each morning waiting for some amazing hocus-Pocus, that i will crawl out of bed and with a lightening bolt boom become magically the “old-me” as if i wasn’t frustrated enough with this intruder who has assumed my body and my life. I have everyone i Know hovering around waiting for me to"snap out of it" NOT that this is any advicw or any help, SORRY, i’m in the same sinking boat-- forced to move back in with my parents at 41! i left home at 17 to attend the O. University apparently, I am no longer responsible enough to care for myself. i haven’t drove a car in 2 years either. and about the Crying my Neuro referred to it as “leaky eyes” not full-blown depression, but I am not a dr. You should definatly consult your own neurosurgeon. I do myself prefer the "leaky eyes " diagnosis, but that’s between you and your doctor! Good Luck,
Nicole at 2years post : (
Tonna…You need to vent. I had my AVM surgery 3 1/2 years ago. It took me a year before I could do anything…However, trust me…it gets better as time goes on…but you’ve only had a short period of time since your surgery. Did I have depression, yes, did I have head pain, yes, what I angry about what happened, yes… So I totally understand how you are feeling. Hang in there sweetie and if you ever need to talk to someone who’s been through it…there are lots and lots of friends on this Network that have been through what you are going through. Keep the Faith.
One of the things that has helped me through my AVM journey is that I’ve encounted people here an on Facebook that I never would have had the pleasure of knowing if not for the AVM. I’m dealing with problems with some similar medical issues, and it’s hard from getting discouraged. Btu the members on here know exactly what you are going through when those areond you may not, and it always helps me to come on here. May this be and continue to be a place where you can gain emotional energy to fight all the physical, mental, and emotional things that are going on right now.
Just like the others have said…we’re all here for you. So many of us here have been through what you are going through, including myself.The pain does get better, progress will continue. It takes time. If the sadness doesn’t seem to be getting better, talk to your doctor. Don’t let it get to the point where it’s overwhelming. I found that an anti-depressant helped. I only took it for a few months. After that, I could handle the little bouts of sadness with a good clansing cry! It is ok to cry, you know? Sometimes it’s therapeutic.
It will take a little time to deal with the not being the woman you were. I cried all the time after my surgery which was 26yrs ago. I was 20 and just starting my life. I had just started a new job four months after the surgery and it was so hard. (it was with the I.R.S.) I didnt drive for a while bc of the seizures. I had to go for counseling to deal with everything I lost, which was everything to the left. I was paralized and lost half my sight. I never knew I had a stroke after surgery until a few days ago? I just thought the surgery caused it! MY Mother took me to a new dr and she told the dr about it. I was blown away since it’s been 26 yrs and I didnt know.
You will come thru this if you give it time. I had the attitude of “Hey I"m alive” I was still alive in 85!
Go and talk with someone and you will see how much it will help you.
I’ll check back if I can find my way. lol
btw, how old r u?
I am 35 yrs old. I think what makes all of this even harder for me is that i am also a 5 year cancer survivor. So i just startd getting on with my life from that when I got hit with this. I just keep feeling like what else can go wrong. 3 weeks after my brain surgery I had to have emergency gall bladder surgery. I always feel like something else is going to wrong. Just when i start to feel better something else happens. Its so hard to stay positive. But i keep trying. Thanks for the talk.
Hi Tonna. I just turned 53 yrs. young…hehehe. They say that what does not kill you makes you stronger. Well some of us should look like Hercules by now…LOL!
On a more serious note…I hope you feel better soon!
Well Tona I would say that the fact that you are still going and that you havn’t given up yet makes you one dang tough woman! And I know that having your brain messed with changes things more than any other medical procedure you could be dealing with and you are not yourself and you don’t understand this new you and how to be a you you understand. My advice to you is to surround yourself with love and support and educate those around you about what you are going through because they have no way of understanding on their own. It does get better as the synapses in your brain heal. But it takes a long time and its easy to be angry and to lash out in the mean time. But that is normal. The good news is you are far from alone.
I hope your reading all the replies Tonna.
There are so many ppl out there that care and who can relate to what your going thru. It will take time and time will heal. I was mad at the world. I would start fights with strangers bc they would stare at me or make a comment about my hair? (they only shaved half of my head) I started a new job four months after surgery. I think it was bc of my Mother’s help and just pushing me not to give up. I hope you have supportive family & friends that will see you through your recovery.
Hang in there
TAKE A LITTLE TIME TO RELAX MAYBE GOIN BACK TO WORK A LITTLE TO SOON AFTER SURGERY. GET YOU SON PRAY TIME IN ALONE AND JUST LET IT ALL OUT BETWEEN YOU AND THE LORD HE WILL HEAR YOU. IT’S OK TO VENT WITH US WE DO UNDERSTAND. SLOW DOWN A LITTLE DONT LOOK IN THE MIRROR PUT ON A HAT DONT LOOK AS MUCH GIVE YOURSELF A LITTLE MORE TIME TO HEAL. U HAVE TO UNDERSTAND YOUR BODY HAD MAJOR SURGERY AND IT’S GOIN TO TAKE SOMETIME TO GET U BACK. MY HAIR IS JUST NOW STARTING TO GROW BACK AND I DONT LIKE IT MUCH BUT I DO DEAL WITH IT A LITTLE BUT I DO PUT SOMETHING ON MY HEAD WHEN I AM OUT IN PUBLIC. I HAD MY SURGERY IN OCT AND HAD A HARD TIME LOOKIN OR FEELIN MY HEAD AT FIRST BUT NOW IT’S OK. I DO HAVE ENOUGH HAIR BACK THAT YOU CANT SEE IT ANYMORE BUT I CAN STILL FEEL IT. YOU WILL SEE A NEW YOU MAYBE NOT THE OLD YOU BUT A NEW YOU THAT YOU LOVE VERY MUCH JUST BECAUSE YOU ARE ALIVE 2DAY. NOW DO SOME PRAYIN AND RELEASE SOME OF THAT BUILDED UP STRESS YOU HAVE AND JUST RELAX AND TAKE YOUR MEDS TO HELP WITH THE PAIN. I WILL BE PRAYIN THAT YOU START TO FEEL BETTER SOON. GOD BLESS TAKE CARE
hey! I understand… If i didn’t know better i would say i wrote that letter… I had my avm removed in 08 and ever since I have developed severe depression and almost like multiple personalities… I also now have epilepsy and can’t drive… Everyone either treats me like a child or like I am crazy… They don’t understand how it feels to have all these feelings that you can’t control going through your head… And sometimes these thoughts are very scary… I cry all the time, or I am angry and I miss my old self too… God i miss her… I don’t have the urge to do anything anymore, I sometimes feel like life gave up on me before i gave up on it… I am sorry you are havin these problems… just know you are not alone… I pray god heals your mind and eases your pain…
God I miss the old me in some ways. Like no pain. No worries. No scars. No avm that I knew of. Friends. And I didn’t need help in everything I do. Damn it sucks. But I cannot change now. That’s hard. Not being able to fix me but I fix everyone else. I’m here if u ever need a venting or good cry. Much love. Super Jen
Hello, how are you doing now? I feel similar to how you felt. I hope you are okay.