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.
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.
It's more confusing than I had figured, driving to work again. Riding the bus for so long, I have the route the bus takes and the route my wife takes memorized. I really don't know how to get to much else around town, since I hadn't driven much in this city. At work I had to get a parking permit and then figure out where to park and when the shuttles run. Felt kind of weird figuring out the parking thing, when I wasn't a new employee. All said, it has gone very smoothly. It's a great feeling to not be dependent on others for my transportation needs. Driving home gets me home about half an hour sooner (because the bus is slower and then I had about a half-mile walk), which is nice. It means more time with my family.
Here's the latest on my seizures and brain surgery:
I've started jogging the last couple weeks. The most I've done was about 17 minutes, but it's a start. After all, I hadn't been jogging in nearly 2 years. It feels good to have the energy to do aerobic exercise and not wonder if I'll end up getting a seizure from it. I only got a small headache on one run. Other than that the headaches are nearly gone. It seems I can go a week or so without a headache and then I'll get a few during the day. The good thing is that they usually last from just a few seconds to a couple minutes. The headaches that lasted several hours don't seem to have been around for awhile. Of course, I am remaining seizure free. I am very happy with the outcome of my right medial temporal lobectomy.
It's been a little over 4 weeks since my right medial temporal lobectomy. I understand everything went well in surgery. The nurse practitioner called a few days after the surgery and told me that what they removed was not a neoplasm. I take that to mean that it was not cancerous at all. She said the neurosurgeon will explain the results in more detail at my follow-up visit.
I follow up with the neurosurgeon next week and am anxious to get back to normal. I think I underestimated the amount of fatigue I would have. The headaches have varied, but are getting less frequent and less intense each day. In fact, I find that I don't take much of the pain medication I was prescribed. What is generally worse than the headaches is the pain in the jaw on the side the surgery was done. For some reason it hurts to open my mouth very wide, which makes eating uncomfortable. Chewing doesn't hurt very much, just the actual opening of the mouth.
At night I have been staying awake until at least 1am and sometimes 3am. Granted, I am sleeping in a little later than usual in the mornings, but it still is odd that I have to lay in bed for so many hours before getting tired.
My vision is improving. I still have some double-vision. It is most noticeable in the lower one-third of my field of vision. The upper fields are almost unaffected. The vision is improving each day it seems. I do find myself being more careful with how I walk, doing so slowly and deliberately to avoid falling.
My sense of smell and taste I seems to have been effected for the worse, but that is something I think I can learn to live with.
Overall I have been very blessed with so many family, friends and wonderful coworkers thinking and praying for me. I don't seem to have any problems speaking English or Spanish, as I have been bilingual for about half of my life. I do have some stuttering, and I am wondering if that is because of the Keppra they put me on to prevent seizures. I had a stuttering problem at times when I was on Keppra for several years, but never had one growing up. I am beginning to play the piano and violin again. I don't really notice any deficit with that either. It is more difficult than usual to play due to double-vision and just not feeling great in general. Those of you who play a musical instrument know that your playing is not the best when your body is not running at 100%. I really think I will regain all of my playing abilities back as I heal and practice a little.
Besides being told that they didn't find cancer, the next best news has been no seizures. This is a big deal since I usually have at least 15 per month. I have not had a single seizure since surgery! The first few days after surgery, and a couple of other times, I felt like I may have a seizure coming on in a while, but never did have one. I'm really hopeful that I can be seizure free again and come off the small amount of Keppra that I am on. If all goes well I could be working nights and driving again someday. For now, I just can't wait to get back to work. I want to feel like I'm doing something productive
Thanks to everyone for you thoughts and prayers!
Before Brain Surgery side view.
Before Brain Surgery Front View
After Brain Surgery, head dressing.
After Brain Surgery, head dressing.
After Brain Surgery, head dressing
After Surgery, Side View without bandage. I'm thinking the scar will start to look more defined with time. I'm considering growing a beard and having it longer than the hair on my head. The neurosurgeon said he put two small plates in my head. I was upset to learn that they aren't magnetic. I was thinking of neat tricks I could show my kids if the plates were magnetic.
After Surgery, Front View without bandage. The black eye is from blood pooling. It's funny to say that my wife beats me though. The mark in the front of my forehead is from a brace that held my head still during surgery. There are 2 more such marks on the back of my head.
Maybe I forgot to mention the name of my brain surgeon. It's Doctor House. No joke, that's his real name. It always makes people laugh when I tell them that. He doesn't seem nearly as heartless or sarcastic as the t.v. character. In fact his bedside manner and professionalism make him not at all like the t.v. character.
We are proceeding to surgery without the WADA test. I was wondering why that is and I asked my neurosurgeon's nurse practitioner. She told me it isn't necessary since they already know exactly where they are going in my brain and they won't mess with the areas that could involve speech. The WADA test is typically done prior to brain surgeries partially to verify which side of the brain involves speech. If the wrong areas are damaged a person could be unable to speak or even understand written or spoken words. What a scary prospect that would be. It is assuring knowing that they won't mess with that area, even though my speech is likely on the left and they are operating on the right side of my brain.
Being a pianist and violinist, I am wondering what affect the surgery will have on my playing abilities. I would be interested to find other musicians that have had a right medial temporal lobectomy. At this point I am willing to proceed to surgery even at risk of harming my musical abilities. It just wouldn't make sense not to cut out what is likely a low grade glioma. The risks of leaving it intact would be too great.
My family has decided to celebrate Christmas early this year, since I will get out of the hospital only a few days before Christmas and probably not in any shape to enjoy the holidays. When I had my colectomy in 2007, I specifically waited until after the holidays to schedule surgery, but ulcerative colitis was more of a great inconvenience, and not cancerous.
I am anxious to return to work as soon as possible after surgery. With any luck I could be seizure free the rest of my life. Wouldn't it be nice to make more money next year than I ever have before, and not have to spend much of it on medical bills?
My seizures continued without much change for several years. They had started in 2005. I was told that one EEG showed left parietal lobe activity. No other EEG's ever showed seizure activity. In 2009, following an MRI at the VA Medical Center in Salt Lake City, Utah, I was told that there was a "spot" on my brain they were watching. Not one that's easily excited or prone to worry about medical problems, I didn't think much of it. In fact, I didn't even tell my wife. A doctor had also correctly (as I would later learn) hypothesized that my seizures were temporal lobe in nature, rather than parietal lobe, based on my symptoms.
Two years later, in August 2011, at the VA Medical Center in Kansas City, Missouri I was told that I had an astrocytoma. I wasn't even sure what an astrocytoma was, just that it must have to do with the brain cells known as astrocytes. I was told after an EEG that there was some slowing seen in that same area as the astrocytoma, the right medial temporal lobe. I was told that the astrocytoma hadn't grown in 2 years. I asked how they knew. The doctors said they looked at my scan from 2 years earlier and it was the same size. A little frustrated I told them I was told it was a "spot" that they were watching, not an astrocytoma. The neurologist sent me to see a neurosurgeon.
I was told by the neurosurgeon that since this spot hadn't grown he thought is wasn't likely to be an astrocytoma, but more likely some type of lesion or scar tissue that I was born with. He told me that I couldn't drive. I reminded him that I had never had a grand-mal seizure or loss of consciousness during any of my seizures. He pointed out that the frequency of my seizures had increased the last several months. He also said that due to the location of concern in my brain, the seizures could easily spread and become generalized seizures. In the end I quit my job as I lived 42.5 miles from work and there was not bus route. We then moved from Kansas to Idaho and later to Salt Lake City, Utah so that I could have a job that I could get to without driving. An MRI-Spectroscopy was ordered. I was told that they would know for sure if this was an astrocytoma based on the results of this test. By the time we got the results, we had already moved. The doctor called and told my wife that he was very sorry, but I did indeed have an astrocytoma.
I began seeing doctors at the Salt Lake City, Utah VA Medical Center again. An attempt was made to better control the seizures by changing medications. They began by adding Topamax (topiramate) to my current regimen of Keppra (levetiracetam) and Trileptal (oxcarbazepine). At first I was a little less drowsy during the day. I think this may be due to a small dose of the medication controlling seizures at night. Eventually I was again at least as drowsy as I had been before. As they increased the Topamax, I was tapered off of the Keppra. I experienced neuropathy in my feet, and tingling in my hands and forearms when pushing shopping carts. My seizures intensified and became more frequent during adjustments of my medication. I sometimes woke at night with a tingling sensation around my lips, which spread to my nose and left face. I would then wake every 2-3 hours during the night with seizures. This was the most frequent they had ever been. I was referred to the University of Utah in May of 2012.
I saw a neurosurgeon at the University of Utah. He did not seem to think that I had an astrocytoma, but his office lost the copy of the MRI-Spectroscopy I left for him to review prior to the appointment. He ordered a long-term video monitoring EEG. For that test, I spent 8 days in the hospital connected to EEG wires. My head got sores from the pressure of the wires on my scalp. They tried many tricks to get me to have seizures, including severe sleep deprivation, high amounts of caffeine intake (I usually don't drink any caffeine), reducing and then stopping my medications. I only had a handful of seizures while in the hospital. What was worse, they didn't see any seizure activity on the monitors. Each time I had a seizure I had to press a button. I sounded about as urgent as a fire alarm and several people would come running in the room. It's kind of embarrassing, when you are awake for your seizures to have so many people come in as if it's some emergency. After I got out of the hospital other tests were ordered.
I had another MRI. They requested another MRI-spectroscopy, but I told them I didn't see the point, since I had one less than a year prior. They ordered a PET scan. I read the result of that and it said I had signs of early dementia. They ordered an MEG scan. They ordered Neuro-psychological testing. Tests, tests and more tests. They wanted me to get video monitoring again with sphenoid electrodes placed nearly on my brain by placing needles in through my temples. I told them I didn't want to do that. I'm sure some of the doctors have gotten tired of dealing with me, but I'm tired of just doing tests.
If this really is an Astrocytoma, why is it taking so long to do surgery? If it isn't then I'm not so sure I want a chunk of my brain removed. On one hand they have told me that it is very safe. On the other hand one doctor said she couldn't guarantee the surgery would have no adverse effects since I also play musical instruments and have seen the effects of medication on my playing. At the current time, I have not gone back on my medications. I have more seizures than I had in the past, but they are not more intense. I'm unable to drive, which sometimes makes me feel like a junior high kid again. I have an appointment with the neurosurgeon again this week and we'll see what that brings.
Clip Holverson Jr. began having seizures at the age of 30, and was diagnosed with epilepsy. Follow this blog to read his story.