Electrodes removed

After over 72 hours of wearing the ambulatory E.E.G. device, I am pretty tired of it. Although it is not heavy, it pulls on your head so many times that your head gets a bit sore, and your head really starts to itch from the glue. After 72 hours with no shower, I think my wife is ready to get this thing off my skull as well... all-in-all, it was not so bad. Just a bit un-confortable. If you have not had one before and are going to, don't worry, it is not as bad as you might think.
Once the EEG tech removed the electrodes by melting the glue with acetone(really stinky stuff - same as nail polish remover), I was still left with a lot of glue stuck to my skull, but at least I can scratch it!!!

Called in to work...

My boss called me in to work today to fix a computer. I had to go, so I slapped (er, carefully placed) a hat over the wrapped electrodes and Christa (my wife) took me in to the office. I ran into a few people, it was not that embarassing, but I did feel a bit awkward.
My scalp is really starting to itch... but I can't scratch... :(

Ambulatory E.E.G.

Today I got hooked up for an Ambulatory E.E.G. test. They take a pretty serious glue/iron-hard-epoxy-stuff and attach your standard set of electrodes to the top of your head. The leads are attached to a small WalkMan sized recorder. It runs on a couple AA batteries and contains a micro-drive that records up to 72 hours worth of electrical activty coming off the top (or the sides) of your head. I will be wearing this for the next few days...

MRI

Concerned that the increased seizure activity I was experiencing could be related to the Cavernous Angioma that I had surgery upon earlier in life, I scheduled an MRI to determine if it had grown or there was any other tissues that might be causing the problem. The MRI turned up nothing obvious that might be causing the increased seizure activity. This was frusterating as I was hoping that the test would turn up something "fixable"... a confusing wish... not that I want a brain tumor or strange tissue causing problems in my head, but it would be nice to have something concrete and identifiable that was causing my epilepsy.
The best thing about the whole experience was that I did get to keep the images generated by the MRI... as it turns out, they all go directly to a computer. I politely asked for them and the techs were able to save them to disk for me. I highly recomend this if you have to get one. The images are facinating... plus, you can prove to your friends that you have a brain!!!

VNS Presentation

Christa and I went to Dr. Dean's office to see a presentation on the VNS Therapy. We got to meet several people who currently had the VNS devices implanted. The effacacy of the device varied between the three people. A man, whose seizures most matched mine, was now completely seizure free. A woman, whose seizures were fairly similar to mine, now had a reduced number. Another woman, whose seizures did not match mine, did not have much improvement from the device, although she did indicate that it helped with recovery after a seizure. These results are consistant with the clinical trials conducted for FDA approval of the devices.

Although each of them had different experiences with the device, all of them indicated that they would stay on the treatment and would have a new device implaned once the old one ran out of battery power.

The devices are quite small. and you could not see the wires in their necks. The man had the oldest model of the device and it protruded quite far from his chest. The newer models are much smaller and are less visible. The Model 102 is 5.5 centimeters in diameter and 7 millimeters thick; it weighs about 25 grams.

After the presentation, I told Dr. Dean that I would like to have an MRI and Ambulatory E.E.G. before I decided on whether to get such an implant. She scheduled them, I will be having them in the next few days.

Birthday seizure

I had a seizure last night on my 32nd birthday. It happened unexpectedly while waiting at a Japanese restaurant for some chicken and shrimp. I had taken all my medicine. Fortunately for me, Christa saw me about to go into the grand mal seizure and was able to lower me to the floor before I crashed to it. I am so very lucky to have her in my life.

This one really got to me because I had gotten plenty of sleep, was not stressed out, had taken my medicine regularly, and had not had many of the smaller seizures that day. I called Dr. Dean and requested an appointment. The nurse recommended that I come in to see a presentation that they were doing on a "new" treatment called VNS.