I just keep thinking about what I want to say and make this to be about. My AVM was discovered a year ago and my craniotomy was done in November 2016. So, I have been through so many different things over that time. I jump between starting at day one and giving all of the good, bad, and ugly things up until now. At the same time, I want to start with where I am now because now is when I seem to be struggling the most. My brain is part of that problem. I have trouble focusing sometimes and if I don’t write down the thoughts I have on my mind I tend to forget them when I do decide to write a post.
So, maybe I will start with today and go back as I feel like it. A craniotomy isn’t a fun thing especially when it involves the speech area. I still have problems every day. I’m working, but I’m not happy working. I do it because I have to pay my bills and keep my health insurance. It’s hard when I look exactly how like looked a year ago, but my mind doesn’t function the way it did then. People that don’t know me and even those that do know me don’t really understand the difficulty I have. I’m an accountant, I prepare the financial reports for the company that I work for. It was tough when I first went back to work two and a half months after my surgery because I actually had to re-remember things that I could do in my sleep before. It was overwhelming and it still is today. I find little things that I still forget how to do and try to avoid questions from co-workers because it is just too much sometimes. I tell people to email rather than call so I can make sure I understand what they are asking me and I can put together a full response that makes sense. I’m in a tough position because some jobs may be eliminated where I work and I can’t help but worry that mine will be one of them. I can’t blame my employer if they go that way because I’m not the person that can just jump in and cover all the bases. On the other side I need them to keep me because I feel that I won’t be able to find another job. My mind is in there, it is just not as sharp and quick as it used to be. Who will want to hire a person that takes too long to learn things, can’t make sense in conversations or answer phone calls. I stress over this every day.
I guess in writing this it makes me really want to make others understand what a brain injury is like. Like I said before, I look like me. People that meet me for the first time would not know that I had brain surgery. They probably just think I’m a little weird if I simply smile or defer to someone else to do the talking or say “what” multiple times because I couldn’t follow the whole conversation. I feel like I need to tell every person I talk to that I had brain surgery, and I won’t always say the right thing or that I can’t always remember the word in that sentence. I don’t want to have to tell everyone, but I want them to understand why I am the way I am. On many days I want that shaved head back so I don’t have to tell people why I have to leave a room if there is too much noise going on.
My life today is not different from it was last year, but it is more difficult. I have to pay attention to my body, turn down the noise around me, avoid all the stress going on(so far the hardest thing of all) and get help when I need it. I’ve been considering making this a private journal for myself, but I guess if anyone reads this and understands or finds some help I would consider it a success. We’ll see how it goes anyway. Feel free to ask or comment on anything. Thanks.
A brain arteriovenous malformation (AVM) is a tangle of abnormal blood vessels connecting arteries and veins in the brain.
The arteries are responsible for taking oxygen-rich blood from the heart to the brain. Veins carry the oxygen-depleted blood back to the lungs and heart. A brain AVM disrupts this vital process.
An arteriovenous malformation can develop anywhere in your body but occurs most often in the brain or spine. Even so, brain AVMs are rare and affect less than 1 percent of the population.
The cause of AVMs is not clear. Most people are born with them, but they can occasionally form later in life. They are rarely passed down among families genetically.
Some people with brain AVMs experience signs and symptoms, such as headache or seizures. AVMs are commonly found after a brain scan for another health issue or after the blood vessels rupture and cause bleeding in the brain (hemorrhage).
Once diagnosed, a brain AVM can often be treated successfully to prevent complications, such as brain damage or stroke.
AVM’s are considered to be congenital and are rarely passed down through families, with the exception of Hereditary Hemorrhagic Telangiectasia (HHT). I am not familiar with HHT, but plan to look into it more and share what I can on it.
An AVM can happen anywhere in the body where arteries and veins come together. The way it was explained to me, there should be capillaries between the arteries and veins, but in an AVM the cappillaries do not form. This ends up causing a tangled mess of arteries and veins. They are often in the brain or spine, but can also be throughout limbs of the body. My AVM was located in the left temporal lobe of the brain. A scary thing for me because that area deals with speech.
Finding an AVM can happen in different ways. Some people will go their entire life and never know there was an AVM and my come to light only in an autopsy. There are symptoms like headaches and seizures. They can be found when the blood vessels reach the point that they rupture. Some people find theirs when having testing done for other injuries that have nothing to do with an AVM. They can be found at any time in life from children to elderly people. I began having seizures and through testing my AVM was finally found through an MRI. I’ve met people online that found out about their AVM after waking up from surgery because of a rupture. Everyone goes through their own journey, but it all comes back to having and AVM somewhere in their body.
This is a quick overview of an arteriovenous malformation(AVM). Please feel free to leave any comments or ask questions. Thanks for reading.
Hello to anyone out there that gives this a read. If you have ever had a “rare disease” you might find yourself in the same position I am in. Everyone understands what cancer is, what a heart attack or stroke means, it’s easy to know that someone has broken a leg when they have a cast on. I tell people I had brain surgery because I had an AVM in my left temporal lobe and I get a lot of blank stares and comments about how good I look now. I do look good, you would never know there was anything wrong with me and that’s because my damage is literally all in my head.
My surgery was nearly a year ago now, but I still have some lingering affects and I really don’t know if they will ever go away. The brain is an amazing thing, but when it doesn’t work the way it used to, life becomes a struggle. I have issues at times with my short-term memory, problems with noise, having conversations with people, both in person and especially on the phone, can be a challenge. Seizures are still happening. Anxiety was a bit of a problem for me prior to my surgery, but now it has really kicked in and I believe there is a some depression as well.
So, I started this blog to share what an AVM(Arteriovenous Malformation) is and what I have been through since it was found and removed. I jumped in full force a few weeks ago with posts and after reading them, they didn’t make enough sense to me, so they were removed and I am starting over new. I hope to give you some information on AVM’s, who has them, where they come from, how people live with them. I also want to share my story, what it’s like to have brain surgery, any brain injury really, and how life can change.
I am open to comments and questions along the way, so feel free. Thanks for your time.