Hi, I’m Loz (38), I just found a link to this site. So I’m not the only one!!, what a relief! I’m really struggling at present. About 9 weeks ago I had a bleed in the part of my brain which deals with my sight. Partially lost my vision in my right eye, and this hasn’t completely returned. I’ve had 2 CT scans and an angiography. I have a small AVM, and it looks like I am a good candidate for the gamma knife. What could be more simple than that?? Only it doesn’t feel that simple to me. I’m constantly tired, my mood ranges from being totally low to being positive to being angry with the whole world. I have some psychological problems with hospitals due to past experience, and I’m so frightened when I go near a hospital. I don’t trust medical professionals. I can’t sleep properly. I feel vulnerable when I’m outdoors because everything looks different and I can’t see properly. I get confused easily and can’t concentrate on what I’m doing. I’ve recently returned to my job to try to restore some normality to my life because thats the only way I can take my mind off everything else, but even that is so hard for me. My partner is a fantastic support, but is not always sure how to help me best, and I can’t tell my partner how to help me because I don’t know what help I need. Has anyone else felt like this?, and will I ever feel normal again?
We are here for you. It took two months for me to recover after my bleed so give yourself lots of leeway and time to absorb what has just happened - both physically and emotionally. What you are feeling is completely normal; I had bouts of depression, anxiety, and everything in between.
Feel free to rant as much as you like, it helps and no one here will judge. We’ve been there. There are members who have had a bleed many years ago and they might be able to better reassure you that you will adjust over time.
When I had my bleed it took me 3-4 months to feel better, but since I was misdiagnosed, I didn’t even know what was truly wrong with me! Since I have been diagnosed (while being checked for something unrelated) I have felt so many of the same ways that you describe. Tired, cranky, mood swings to the extreme, I also am terrified of doctors and the hospital, and I am not sleeping well either. I have had nightmares. Somehow, I have made it this far since being diagnosed in April, and somehow I am dragging myself to the hospital Monday for surgery, even though it scares me. All I know is that things will get better, they have to. I am very scared, and unable to work or do many of the things I used to do (limits from the hospital). I really have to give Jason lots of credit for listening to me complain on the phone almost every night and dealing with my crankyness. While I don’t know what will happen down the road, I really understand how you are feeling! Family and friends of my parents have tried to comfort me, but they don’t really understand how this all feels, even though their intentions are good, but this site has really helped me in the last few months. Well, I am rambling now and not even really sure if I am making sense so I’m cutting myself off!
What you’re feeling is perfectly natural, Loz. Feel free tro read my page too and you’ll see that I’ve had my times when I just have to enjoy a good “pity party” LOL My husband is such a wreck with this whole thing and I try not to worry him, so I come here and talk to my friends. This new famiy will help you so much!
I agree with everyone else that has already responded. It does take a long while before you start to really comprehend what has happened to you. As for feeling normal - well I definitely feel a lot better than I did few months after my bleed, but I am not sure you can go completely back to how you were before because this experience is so life-changing. I believe once you slowly start to accept the situation, you will come out even stronger (that’s what Liam tells me!).
Take care, Soili
We have all felt like you have! So you are not alone my friend! I had my AVM removed 9mons ago and still feel like you! Some people progress faster than other’s and some don’t. I feel like my whole life has changed friends included. What you describe sounds like panic attacks! I had those too. Yes hospitals are scary for me to! Hate them and the profession …so I hear you!!!
However these are your choices , you take care of the darn thing or it will take care of you! Life will not be the same. So please tell you mate that all that you are feeling is the AVM. And true love will be tested durning this time! At least it was for me! I can’t speak for the rest but I hear you and have felt the same! Just hang on dear friend…It gets harder before it gets better! Just go on faith…Good luck…Stand strong…you can do it! We are Survivors!
Sending Angel light and love…d
I think we have and are still there with the feelings you have described. took me months to be able to step down one sep to outside after bleed but i’m out and about now, still not back at work but i will get there. I don’t know if i’ll ever feel as normal as i did before so normal now has changed but i think i feel normal ish not much help sorry. Take Care, Amanda
HI, my name is Rosie. Just in november of 2007 I found out i had an AVM in my left frontal lobe that is 5 cm. I couldnt have surgery because it would be too risky. So, three months ago I had the gammaknife radiation treatment. Since the radiation i have been having seizures non stop. My right hand is always in discomfort. I’m basically living on adavan to mellow my nerves, but as well as dilantin and lamictal. I also just found this sight, but you seem to feel just how i feel right now. To just think three months before I was living a normal life with no pain no seizures. I’m only 23yearsold and i cant do anything that I use to do. I’m suppose to get married this august, but i wont beable to drink,party, or go on any rides…nothing that brings my heart rate up.
And now I ask will I ever feel normal again?
NO I HAVE BEEN SEARCHING ON THIS THING FOR ABOUT TWENTY YEARS NOW AND BEN FINALLY DEVELOPED THIS SIGHT FOR AVM VICTIMS. IT IS PRETTY NEAT THOUGH.
I KNOW WORK IS A RESTFUL PLACE FOR ME.
WHAT DO YOU DO? I AM A DESIGNER/DRAFTSMAN FOR URS, INC. WHICH IS A WORLDWIDE ENGINEERING FIRM.
NOT TO MANY PEOPLE AROUND MY AGE AND YOU SAY YOU ARE A THIRTY-EIGHT YEAR OLD FEMALE. WOW WHAT A TRIP…
I AM A THIRTY-NINE MALE. MY AVM IS LOCATED CENTRALLY IN MY BRAIN. IT IS 5CM IN DIAMETER. I HAVE BEEN SHOT THREE TIMES FOR IT. AND ACCORDING TO MY NEUROSURGEON ABOUT A MONTH AGO I WENT TO GO GET AN MRI OF IT, JUST TO CHECK ON IT. HE SAID THE 5CM IS STILL IN THERE. BUT HE SAID THAT THE RAYS MAY OF HIT IT AND MADE IT STRONGER. HE SAID THAT I CAN NOT GET ZAPPED AGAIN UNLESS IT BLEEDS. SO IT IS A WAITING OR MAYBE NOT A WAITING GAME FOR ME… I JUST PRAY EVERY DAY THAT IT DOESN’T BLEED AGAIN.
YES I FEEL LIKE THAT ALMOST EVERY DAY. EXCEPT I EXPRESS MYSELF. PEOPLE LOOK AT ME KIND OF FUNNY AND SAY OK. LIKE DISBELIEF BUT YOU KNOW I HAVE TO GO ON… FEEL FREE TO TYPE ANY TIME TO ME BUT I AM HERE M-F 06:30AM-4:00 PM MOST OF THE TIME ANYWAYS. EEEHHHH!!!
It’s taken me a while to respond, sorry. What you say makes perfect sense to me. My mother’s answer to how I’m feeling is clean some windows and I’ll feel better - lol. She’s from another planet. My partner really tries, and is holding me together psychologically and emotionally at present. I just keep hoping that it’s all a dream and I’ll wake up. After hearing about some of the people on here I guess it’s early days for me.
I’m sure I’ll find this site really useful too. My partner is working all the hours god sends at present, 7 days a week where possible 6am - 10pm. It just adds another worry to the pot. Just trying to compensate for the reduction in my income because I’ve been off work sick, and permanently tired. Today my employer has decided to cut my hours and salary because she doesn’t think I should be trying to return to work. I’ve only been back there for two weeks. Whatever happened to listening to me? I know what I’m capable of, or am I being totally unrealistic? I just don’t know any more!
I think my biggest problem is that I cannot accept what has happened to me, and I don’t know how I ever will. Everything just seems so raw to me at present. I’m trying to take one day at a time, and just get through them.
Thank you, everyone is so supportive on here.
yes you just got to wake up… and have some fun… for you know and i know we do not know when we are going to meet our maker.
Well my work is kind of easing up. But that’s because I have experience on this computer working the program(acad). But when they really need someone to take care of the work quickly and not to many mistakes except the designers then they call on me.
isn’t this site just awesome… I enjoy it also…
It hasn’t just happened to you. You have been living with this thing for thirty-eight years and doing just fine at that. So just continue to live your life and be happy. eeehhhhh!!! and not shocked.
You had just found out about your problem.
Wow, you certainly put my situation in perspective, along with many others on here. Can’t anything be done about your seizures? Is it the radiotherapy treatment that started them off?
I do not have any seizures. I have only had one and I do not want another one. I had one many years ago when I was in the hospital the first time.
They are freaky. It’s like you just can not stop shaking… It is weird… But any way just live life one day at a time. Wake up in the morning and thank your higher power and just take one minute at a time.
yes you will, you have to feel that you are going to get better. Like me I was asleep for thirty-days the first eppisode of this thing and I woke up said hello to my mother and father and everything was koshier. I had my fights in high school, had my drinking days and of course another bleed again and I was asleep for about seven days. And oh well I went to go get an MRI a month ago and they told me that it was still in there or their. But hey I am living my life just one day at a time. And another thing I have been getting these damn MRI causes muscle pain mailing flicks on the computer. Without the darn MRI with the dye they never would of found my (AVM). So what can I tell them… Stop sending this advertisement to me…Of course I have had a few angiograms but you know that is before your treatments mainly.
But MRI’s I will continue getting one with the dye every year that I am on this great planet… They save I. and so on and so forth…