I’m not sure it’s really a story, more of my journey. I consider myself very lucky that I did not have a rupture but this has most decidedly affected my life.

So, where to start, it actually began in 2007. I was going through a divorce and was driving from Seattle, WA to Oklahoma to live near family, but on the drive I began having some weird things happen. We, my 2 kids, and I drove the whole distance and I would notice that when we stopped for gas or to get a snack, hotel, etc. it would feel like my head was still traveling at 70 miles per hour. Once we got to Oklahoma this went away a bit, but I kept getting dizzier and just felt really off. I noticed that the sensation in my right side would leave me for a bit, but it always came back.  This kept getting worse and worse however, so I started worrying. Part of me even thought it could be due to the stress of going through a divorce. I actually felt silly even worrying about it and never even thought of an AVM but went ahead to the doc to see if it might be MS. I say MS because I have family members with it, my MD agreed that it should be checked out so an MRI/MRA was done.
He called me that same week on a Sunday…that scared me, receiving a call from a physician on a Sunday. He said the good news was that I did not have MS, however they did see a large AVM. I had to look it up because I didn’t know what it was. From there I was sent to see a neurologist, in fact I saw 4 of them before I was comfortable.
I believe that a person should feel very comfortable with the physician they choose.

Where the AVM was located was tricky, as it involved the cerebral artery in the left side of the brain, and my doc said it laid directly on the motor strip. Because of the location a craniotomy was out, as they told me I would most likely end up paralyzed on the right side, it was that close. So I could choose the glue or gamma knife. My physician, neurosurgeon Dr. Charles Engles, who is great by the way, talked me through the whole thing, risks, side effects, advantages, etc. He even sent my scans to the best AVM physician in the US, who said that gamma knife was probably my best option. So gamma knife it was. From there a radiation oncologist got involved, another neurologist, and an interventional radiologist.

The big day came really fast it seemed like and on December 22, 2008 I went through the process. The halo was not fun, however it was pretty simple at the time and about 6 hours later I was on my way home. Easy peasy right? No.
Actually I was doing well until February of 2011. The morning started out fine and then at 10 am my thumb on the right hand just went numb, within seconds my entire right side was just gone. My son was home with me, he was around 18 at the time (my daughter was about 15) and even though I was having what seemed like a stroke, I was more worried about him than me….the look on his face, it still gets to me when I think about it. I’ve never seen him that scared. I didn’t have a stroke but was having a seizure and over the next few days I had about 2 to 3 seizures per hour, they lasted about 10 minutes to 15 minutes at a time. One minute I would be fine and the next I was pretty much paralyzed on the right side, I couldn’t move my hand, arm, eye lids, mouth, etc., the right side of my face drooped, and the upper half of the right side of my body was just gone, all of it was just gone, I couldn’t even talk…OK I could talk it was just that no one could understand me. So after another round of MRI’s it was seen that I had some swelling in the brain from the radiation, a fun side effect let me tall ya (yes, sarcasm).

I had some effects of the right side before, of it just feeling heavy and have been on steroids more times than I can count, this time however I was placed on a massive dose of steroids and seizure meds. The seizures stopped, but my right hand, and arm is shot. Sometimes the right side of my face as well. If you’ve ever had your arm fall asleep and that tingly feeling you get when it wakes back up, that is what it’s like…all the time, it just never actually wakes up, it just tingles.

After about 6 months even with the seizure meds, the arm kept getting worse and worse and eventually I woke up one day and felt like my right arm was no longer mine. Rationally I could look at the arm/hand and I knew it was attached to my body and knew that it was mine, but my brain did not feel that way. I had to concentrate on not ignoring it. I would catch myself looking at it and thinking “where did that come from.” I could move it but had to really think about it and force it to move, which is not conducive to my job as I type a lot with work. Then came disability for a short time (thank goodness I had that option with my job) and was able to concentrate on trying to get better for about 6 months. My seizure meds were tripled, physical therapy helped with muscle atrophy and I went back to work in March of 2013. I still can’t feel my hand or arm, but I can move it so I can work. I do compensate with my left hand a lot and I have to make sure that I use an oven mitt when taking things out of the oven. I say that because I took a hot pan out of the oven once and thought I had a pot holder in the right place, but didn’t and when I finally set the pan down, I had burned my hand pretty bad, but I just didn’t feel it.

Now here it is April of 2013 and the seizures have started once again, they are in the process of adding another seizure med at this time. I’ve been placed on Lyrica, Neurontin and Gabapentin in the past for the neuropathy but my body does not like those drugs at all and I’m no longer allowed to take them.  Let’s just say that the side effects for me were very, very bad. Now I’m on 2 seizure meds, which are very expensive, and I still can’t feel my right arm, right hand and sometimes the right side of my face still goes numb and does the right side of my tongue. Having your tongue fall asleep feels really weird I might add. My concentration sucks, my memory is horrible and I’m quite dizzy all the time, and at times I get really bad headaches. They had talked about even doing a boost of radiation to the area, but with the side effects I’ve had so far it was decided that additional radiation would not be a good idea. I have a lot of nerve pain as well, if you can imagine an ice pick stabbing you in the face then you know what I feel.

I am lucky though, my last MRI notes that the AVM is pretty much gone, but there is artifact left. My neurologist says that the area is encapsulated which is good in a way. That is the area that is giving me the seizures and because it is only in that one area I only have seizures that mimic strokes instead of having grand-Mal seizures, which is what he thinks I would be having.

So that is where I’m at. It’s 2013, 5 years now since the gamma knife. My life isn’t perfect and there are a lot of things I cannot do, but there are a lot of things I can do. I work (I thank God every day that I am able to work from home) and I have 2 great kids that help me in every way they can.
I don’t look sick and I try as much as I can to hide that anything is wrong at all. People look at me a bit funny sometimes when I stumble or when I slur my words and some people have even gotten mad at me because I don’t remember who they are, but I try no to let that bother me. I’m doing the best I can and that is all I can do. I hope that one day the seizures will stop and I hope to have the feeling back in my hand, arm and face, but I may never get it back and I have to just deal with that.

I know I’m lucky I didn’t have a rupture, and I’m glad that I had the original symptoms that led me to question what was going on, because I know that most people don’t.
All in all this has been a horrible experience but an enriching experience at the same time, and if you have gone through anything like it then you know what I mean.
I know that people have gone through so much worse and at times I feel guilty because of that, like my AVM doesn’t mean that much because I haven’t had worse things happen…I know that sounds crazy but it’s just the way I feel.

Anyway, that is my story so far. They tell you that 3 years after the gamma knife there is an 80% chance that the AVM will be gone…it is, but the side effects continue. I wonder at times what else will come but I have to take this one day at a time because right now that is pretty much all I can do.

I’m not sure of my story will help anyone, but there it is.