Since I was diagnosed with Ulcerative Colitis and Epilepsy in a 2 week period in 2005, I have tried to find a connection between the two. I strongly believe the Asacol I was on greatly contributed to my seizures. Many times I have wondered how else they were linked. 

Today I found an article that relates intestinal problems and epilepsy. Furthermore, it refers to my exact type of epilepsy and problems with the amygdala. I found this very interesting and wonder how many more people out there suffer from abdominal epilepsy, temporal lobe epilepsy, ulcerative colitis, or some combination of those. 

Read the article and let me know what you think. I would be really interested to find anybody in a similar situation.

​http://www.meridianinstitute.com/abepilep.htm

It's been a little over 3 years since they took a chunk of my brain out. In some ways I don't think I'll ever be the same - remembering new faces is very difficult, I'm a little more forgetful than my old self, and have a little less vocal filter. I met with my surgeon recently and there's really no change in my MRI since surgery. That means I shouldn't need another MRI for 2 years.

Overall I must say I am very pleased with the outcome of the surgery. Dr. Paul House at the University of Utah Hospital performed a right medial temporal lobectomy a little over 3 years ago on me. I've only had a couple of seizures since then and they were brought on by dehydration, lack of sleep, little illnesses. My concentration and short-term memory for most things has improved. My piano playing is great for the amount of time I have to practice.

I'm out to prove that I can improve my ability to learn new faces. I've started learning to draw faces. The process has been very tedious. At first all my drawings - men, women, children - all turned out looking like ugly guys. I really couldn't figure out why. I've kept trying and I'm gradually getting my drawings to look somewhat like the pictures I'm drawing from. I've started to pay attention to facial details that I've really never noticed before. The book I'm currently using describes noses, ears, lips and more - pointing out things I can't believe I've never noticed. Hopefully not having the right fusiform gyrus can be compensated by some other area of my brain, reducing the amount of prosopagnosia that I have.

I had an MRI the end of September. I had been nearly 2 years since the last one. The MRI showed no new growth, it looked like it did after surgery 3 years ago. That's good news and means I shouldn't need another MRI for another 2 years.

Well, I had a Neuro-Psych eval a few months prior to surgery, when I had been off medication for about 2 months. About 15 months after surgery I had the follow up evaluation. I got the results last week.  

The main highlights are: 

My overall I.Q. increased slightly - we suspect this is due to not having interference from seizure activity.

My problem solving went down 0.5 Standard Deviations, but is still above average.

My visual memory went down 1.5 Standard Deviations, and is now near the low end of normal.  

The fact that my visual memory declined so sharply is not surprising, given the fact that I have markedly increased prosopagnosia compared to before surgery. I can learn new faces to an extent, but it is much more difficult. I also can't just picture somebody's face at will. For most people, all I can visualize is a the corner of the mouth with a small amount of cheek, and/or an eyebrow with some forehead. At times I've noticed a more complete face, and they nearly always are smiling. That being the case, I try to picture people smiling when trying to recall a face. Has anybody else noticed such a connection? If you have prosopagnosia perhaps you can try picturing people smiling and see if it helps.

So, I had my annual MRI and then visited with the neurosurgeon the other day. He told me I was doing so well that I don't need an annual MRI, I only need one every two years for right now. He said they still are unsure what caused the abnormal cells in my brain, but that the worst case scenario was that they were a slow-growing, pre-cancerous bunch of cells. The types he referred to he said take about 15 years to recur generally. He said if I start having a bunch of seizures I need to get checked out, but otherwise not to worry. He pointed out rather nonchalantly that if that area starts to grow or become a problem, he could go back and take twice as much out as last time - and that I would probably not notice any problems and would be back to work right away. Seems funny to me that he talks about brain surgery like it's no big deal. Great news though. I'm really happy to be so much more active and not on any medication. Hadn't been like this for years prior to right medial temporal lobectomy.

Back in high school I remember so many people saying they were bad with names, but they never would forget a face. I thought, hmm wouldn't that be nice to remember faces so easily. When I was younger I think I remembered them more easily, but as I got older I had more and more problems remembering faces. After my surgery I noticed the problem was much worse than before. People I had known for several months, I could still recognize. People that I had known only a couple weeks before surgery, or anytime after the surgery, I could not recognize. I am good with voices, so I would quickly memorize a person's voice and use that to help recognize a person. I also make an effort to remember a person's body type and height, hair color, and things like that to help me remember them.

So many people's faces just look the same to me, until I know them for several months. It turns out that there is an area called the fusiform gyrus in the temporal lobes of the brain. Since my right medial temporal lobe was removed with the lobectomy (to correct seizures), I am missing the right fusiform gyrus. Somehow I am still able to learn faces, it just takes a really long time. Another difference is that I can't mentally picture a face. I remember as a child being able to picture a face whenever I wished, but I no longer have that ability. So, for example, I recognize my wife when I see her, but am unable to visualize her face even though we have been married for several years. 

Anybody out there have experience with facial blindness? Post a comment about it.

Yesterday as I was driving down the interstate, during my commute home.  I suddenly smelled a very strong odor.  It was the smell of something electrical getting very hot - like it was burning.  This is a type of aura that I sometimes had in the past when I was getting close to having seizures.  That type of aura is known as an olfactory hallucination.  (It's a smell that isn't really there.)  The smell was very strong this time.  I was nervous.  I didn't know why I was experiencing this smell - I had been well-hydrated and had been sleeping well too.  

Then the radio quit working.  What a relief!  It wasn't just in my brain, it was actually something electrical getting very hot.  Brought back memories of seizures, but luckily, this was just the real smell.  I guess I'll have to get used to really smelling things now.

I hadn't been able to go to summer camp for several years for a couple of reasons - we moved several times and I was having lots of seizures. It has seemed over the years that anything that makes me more tired (such as heat) would active my simple partial seizures. This summer was different.

My 2 boys went to scout camp with their troop. I volunteered to go along so the 11-year old could spend the whole week. It's the policy of the Church of Jesus Christ of Latter-Day Saints that 11-year olds can't spend more than a couple days camping with the scouts unless accompanied by one of their parents. Since they belong to an LDS troop, I volunteered to go so that he could go to summer camp.

We had a really good time. I got to help the boys get to merit badge classes and sign up for additional classes as needed. I got to spend some time kyaking with one of my sons. Those things sure do tip over much easier than canoes.

Even though I'm not on any medications for seizures, I had no seizures all week and didn't even feel like I may have one coming along soon. Brain surgery has been a huge success for me. I had a right medial temporal lobectomy 7 months ago and am satisfied with the outcome. I'm looking forward to participating in even more hot summer activities.

Possibly the hardest part was spending a week with 14 boys, more than half of whom I had never met.  There were also leaders I had never met.  Since I had problems with facial recognition, made worse by brain surgery, I wasn't able to learn everybody's name and face.  I can remember names with some effort, but it does no good when I can't recognize the faces they go with.

Well it's been awhile since my brain surgery.  I had a right medial temporal lobectomy on December 19th 2012.  My last seizure prior to surgery was December 17th.  That all changed last week.

Happy 4th of July everyone.  I'm especially grateful to all who have served our great country in the armed services.  Thank-you for your service!

Things are still going great post-surgery.  It's been over 6 months now.  Still no seizures, so I am hopeful that I may never have them again.  The other day I worked in an area of the hospital that required me to wear an OR cap.  For those that don't know what that is, it's the blue cap that looks almost like a hair net.  It's held on by a small elastic band.  Wearing it gave me a headache, even though it's a very small, weak elastic band.  Strange how such a small amount of pressure can affect the area my skull was cut open.  It wasn't the worst headache in the world, so no big deal really.  The occasional small headache is much better than the frequent seizures I was having before brain surgery.