This is my first time reaching out for any kind of any way. So a little about my AVM...

My AVM presented itself in seizures when i was 21 years old. I dropped at work; and continued to seize 4 more times in the hospital before getting into a CT scan and sent to Stanford. I was in the ICU for a week attempting to slow my seizures and confirm my condition. My medical team decided the course of action should be CyberKnife, followed by Embolization, and finally Removal. All these treatments were based on the fact that my AVM is located in my left cerebral cortex and is 6cm. The size has created pressure on my language center; so they are concerned that removing one of this size is too risky at this time. The CyberKnife will be over the course of 3 years; and won't show a difference until it is complete.

My head aches have gotten worse since the treatment; and my doctors assure me that it is part of the side effects and that it is just inflammation. I have started to have absence seizures almost daily (if not multiple daily), with full seize almost monthly. I've been on Lamotragine, Neurontin, Klonapin, Ativan, and Keppra - all don't seem to provide too much relief. I work for a large digital media marketing company that is incredibly supportive and understanding of my condition (mostly because they've had to ambulance me out of here 3 times now) I'm absolutely terrified.

When i was first diagnosed and treated, i was so positive and so excited that there is this hope to get rid of the damn thing. but as time has gone by, with almost increased symptoms...i'm losing faith. I just want it gone.

I have lost the person i was because i'm so scared and emotional all the time. I just want to give up and go away. I'm an emotional wreck so often i can barely get out of bed some days. I feel like no one gets this, and keep thinking that i'm weak for not being able to accept this, and deal with it. I feel so stupid knowing there are so many others that are so much worse off than me...and they handle it so much better with so much positivity and hope.

Why can't i get over this, and be hopeful again? How can i not feel so alone? I get so angry that i snap on people that attempt to give me advice because they don't understand and they don't realize that saying 'you just have to be strong' just makes me feel weaker. I'm terrified of losing my job because of how often i work from home, and how little responsibility they give me. When i express this concern to my boss she assures me that they wont do this and that they just want me healthy again. That anything they can do to promote that and limit my stress - they will do. But i can't help but feel i'm just kept around out of pity.

I don't want to be pitied. i want to be better and not feel like such a waste. My family is having such a hard time staying supportive when all i do is push them away and snap on them. I've pushed the small group of friends i have away because i'm too bitter to listen to their advice. I feel like i've lost all of my independence and am longer my own person.

I'm so depressed it's almost like it's making this worse than it should be. I want to just go away and stop being such a burden to everyone in my life.

I don't share this, i don't feel like anyone takes me seriously anymore. I feel so stupid and alone and useless and like of lost everything that made me, me.

What do i do? How can I find my independence...the thing that i treasure most. I need help...and advice from someone that understands these feelings of complete and utter hopelessness. Help me...

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Devongrace, I am so glad you posted. You have already started to help yourself just by doing that. And not only that. You are already helping yourself by reaching and responding to Saurav as you did. Well done!

AVM and radiosurgery can bring a lot of difficult emotional side effects. The anger and depression you mention have been experienced by many others here, too. It is hard on family and friends sometimes, but perhaps harder on yourself.

If you can visit a neuropsych, you may be able to get some help with the emotional side effects. If a neuropsych is not available in your area, a skilled psychiatrist can also be helpful. Keep posting here, keep reaching out, and in awhile you will look back and see how far you have come. We are glad you are here.

Devongrace, I'm really sorry to read your story, you describe your feelings so well and yet you arte not alone as I could have written what you did. You are not alone here and there eloquent knoweledgeable people here who can perhaps give advice and an ear to listen to your feelings. I'm no expert - I've my own woes and baggage too, friends giving opinions and suggestions and all you want is for them to shut up... sometimes I think others just feel the need to offer comfort but all they do is aggrovate me.

Try to take one day at a time, I've had my goals and been dissapointed when they're not achieved, but just set another, ride the rollercoaster of life as it is now because some days will seem better than others.

I've had Cyberknife, was expecting a result but it could be years yet for me, but everyone is different and react differently. The anger and frustration wasn't something I recognised in the old me... but I do now. I'm looking into neuropsych too - I've clinic with my neuro next week so I'm gonna ask him for more help.
Another young person today had another bleak story of low feelings - Saurav... I wish you both well and keep asking for help too...
Keep in touch and keep a log/diary/blog - might help quantify to look back if anything triggered good times or bad...


I can feel your frustration, anger, fear, and pain in your words, and I'm so sorry you're going through all this. It's so very unfair. No one should have to go through what you're dealing with, and what a lot of people here are dealing with. Please know that we're pulling for you here, we understand how much this sucks because it robs you not only of the things you used to do and feel you should still be doing, but it can also seem to rob you of the person you were.

You have every right to every single thing you're feeling, whenever you feel it. It doesn't matter how many other people "have it worse", your challenges and your struggles are tough ones, there's just no denying that. Let yourself feel what you're feeling and give yourself permission to react to what's going on in your life right now.

Going through treatment and having the symptoms get worse before getting better is so painful to take - not only the physical pain, but the fear that it won't get any better, or that it will get even worse. I know, because I've been there and I felt like there was really no point if the treatment was going to make me feel worse.

It does get better, it's just that the "better" part can be impossible to see when you're smack in the middle of the "sucks like nobody's business" part.

Please ask to see a neuropsych - it's their job to help people process exactly the things you're going through. They understand, because they deal with this every day and they know how to help people work through the tough emotions, come up with adaptive ways to deal with the worst of the symptoms and be the person they want to be despite the medical treatments that seem to get in the way of a person's life even while they're saving the person's life.

I promise you that you haven't lost yourself - you're still you, you're just facing an immense challenge. Your personality comes through loud and clear in your post. I really get a strong sense of your emotional turbulence from your writing and your grief about those things you want to be able to do and can't right now.

Ask your doctor for a referral to a psychologist or counselor - a neuropsych would be the most helpful because as I said, they deal with people like us every day.

Please keep us updated on how you're doing and how things are going in your treatment.

Hi Devongrace, I read your post and I am also having problems with depression. On may 23rd of 2014 I came home from work early because the dr office i worked at closed at noon that day. The last thing I remember is sitting on the edge on my bed to change clothes to clean my house. I have been told what happened after that but I do not remember anything. At 3:00 pm that day i called my husband at work and told him I had a really bad headache and neck hurt and i needed to go the hospital. He said I was disoriented but awake and talking. My neighbor brought me to the hospital and that is when they found my brain bleed and avm. They sent me by helicopter to university hospital in Shreveport. I was in ICU for 8 days and on may 27th they coiled the ruptured aneurysm's. I was told daily how luck I was and how well I was doing. I was a good patient I was very determined to get well and return to old self again. I pushed and pushed myself everyday after I got home from the hospital in June. I had a lot of friends and family calls and visits. My employer said he would work with me to come back to work. Everything was going good, I made goals for myself and met them. In september I went to work for a few hours a day a few days a week. I did insurance and billing for a family practice doctor for 17 years. I even did pretty good in October when my youngest daughter got married. But then at the end of October my family dr whom I also worked for took me off work because of headaches, dizziness, fatigue,depression,nausea, hands and feet swelling. First part of November my doctor closed his practice of 32 years to join some others doctors so I no longer have a job and everything has gone down hill from there for me. Of course the friends don't call or visit and the cards stopped months ago it's like I am alive but nothing to get well for. I have a 6mooth follow up appt this month to see if the gamma knife i had to my avm has helped but they even said they did not expect any change for the 1st year. If you ever want to talk just contact me I am an emotional rollercoaster but i understand exactly what you are saying.

I wanted to add a bit more - after reading the other comments - I too decided today to go seek more professional mental health support from my GP. For me the stigma of being 'not in control' has passed to the point where I felt so low I had to do something. So thanks, everyone, for the wise words and life stories shared. I too will take the same advice and go get help with my emotions...

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That's great, Wozza. I hope you see improvement soon.


Been there done that. All these feelings that you are going through, they are normal. We are faced with great challenges. But we are a special breed: we are SURVIVORS. Having said that, it is important that you get emotional support from a Counselor or a Psychologist. Even though these feelings are normal, they are normal in that same sense that your knees hurt when you fall down, and you go to the doctor to get your knees checked. Having an AVM is sort of like that, it is bad news, and we have to learn how to deal with that, and there are professionals that are trained in just that.

In regards to "having lost yourself" I doubt that is the case. But most certainly you are not the same person. You have grown. When faced with challenges, we all grow. Right now you are in the middle of that growth, so you might not see it.

Keep your head up. We are survivors, and we have to be proud of that!


I think you are brave for posting. I understand having a large AVM causing issues. When I had my AVM removed (via open brain surgery), it caused some swelling in the area the doctors worked on. That happened to be my speech and vision centers. So I had aphasia. I stuttered, had double-vision, and could not think of the word for certain things very often. It was like the whole it's-on-the-tip-of-my-tongue thing, but every couple minutes. I also couldn't read or write properly for about a month and a half. This was really tough for me because I love reading, and I'm normally really talkative. It was like those things had been taken away from me, and because of my issues talking, I couldn't even explain what was wrong at the time, so I just cried.
And I understand the social part too. When I came back to school, people wanted to know where I had been, so I told them. But then they treated me differently because I had brain surgery. This, for some reason, made people think I was mentally handicapped even though my surgery had nothing to do with cognition. I was mad and depressed for a long time. I stopped talking to people about it, for fear of what they would think.
As hackneyed as this sounds, the best thing to do is soldier on. Hopefully, the support of people like me can help you to feel better. You can find yourself again, I know you can. I did, and when I found myself, it was a stronger me. I want the same for you and I know you can do it. Just keep holding on, because you are stronger than you realize.

I know what you are talking about. I felt like I lost my whole life. My bleed was back in 2006. I lost my friends/girlfriend/everything except family. People act like they can relate and can see where you are coming from but they can’t. I felt like there was no way out. It’s a long road but things will get better. My life is honestly better now than it was before my bleed. Just hang in there and keep your head up as hard as it is. You WILL get your life back.

The words by the others here are very good. I wish I could speak that well, but I’ve never had that skill. They are doing a good job of describing the difficulties ahead of you and your drive to succeed.

One thing I have slowly learned is that success has changed for me. Before all this AVM stuff, I was going to be a very successful chemist developing all kinds of patents and new inventions. Now, my viewpoint on life has changed to thinking survival is success for me. If I can just keep my job, that is good. This is good to learn how I have changed. Of course there are still lots of frustrations and panics that a headache could really mean it’s back.

I have been working with a psychologist and that helps. I wish you good luck on finding someone to help you.

My doctor informed me that people who suffer from seizures also have a higher risk of depression. I don't know why but this made me feel a little better about what I was going through. I think before then I felt like I was so depressed because I wasn't strong enough mentally. I take medication for depression and I'm sure a lot of other people on this site do as well. Tell your doctor how you're feeling and don't be afraid to ask for help. Waiting for the gamma to do it's thing will be the longest wait of your life, at least that's how it feels for me. I have felt everything you are feeling. Just because nobody in your inner circle can relate doesn't mean you are alone. They don't understand what losing all control of your life can feel like. We are here for you and you are not alone!

Thank you so much; all of the support here is incredible.

Always feel free to reach out to chat :-)

I feel the exact same way - I know people are here...but they aren't here. It's so hard to find things to keep getting you out of bed when there's nothing to get out for.
I, too, am a total roller coaster. I'm lucky my work is so understanding - i can't imagine being let go because of this.
I've decided to take a few weeks of short term disability in order to really rest and self reflect.
but there is only so much time you can take before the 'understanding' wears off...really makes me nervous

I'm always here to chat - it might be delayed, but please feel free to chit chat and vent.

That is incredible! It helps so much knowing that we really are in this together and can help.
Keep us posted on your progress!

You're right; we are special - the reminders are huge!
thank you for your advice!

Thank you so much; where was your AVM located? Mine is on my language center and that tip of the tongue word loss is what happens to me when it swells. I can look at words and get the idea of what it's saying kind of and then slowly can't figure it out what so ever and get so frustrated.

Hi devongrace...My AVM issue is also in the language area..the left temporal lobe. And yes, you are can be very frustrating. What we have is called aphasia which I was informed about when I had testing by a neuro-phys doctor. Have you had any testing?

I've had a few functional MRI's and they just tell me that it's swelling pressing on the left temporal.
I think my next step is to find a neuro-phys dr.

what would you say makes you feel like life is so much better now than before? I always wonder if this will be almost a way to filter through the positive and negative people around me.