Support Groups

If you don’t have a friend or know someone that has epilepsy there are always support groups that you can rely on.  Support groups are everywhere. There are two major types of support groups, face-to-face support groups and online support groups. There are many pros and cons to these types of support groups.

Face-to-face support groups usually have a professional that runs the whole group. Sometimes they may have each meeting planned out as to what the topic is that night. Also by meeting face-to-face you get to know the people in the group personally and hopefully make some friendships in the long run. As you go to a face-to-face support group it usually requires some measure of reciprocity.

You can find face-to-face support groups within your community, such as your local hospital. If you do not know of any local support groups in your community ask your neurologist, family doctor or your local Epilepsy Foundation. If there is no support groups in your area that pertain to epilepsy be open to other support groups that may be offered, such as a Brain Injury support group.

 You would be surprised how someone with a brain injury can have similar situations to someone with epilepsy even if they don’t have seizures. Some of the things you might have in common are cognitive difficulties, not being able to drive, medication issues, or depression. There is always a way to relate to someone, so keep your options open when looking into a support group within your community.

Face-to-face support groups also have there down falls. Keep in mind as being part of a local support group you have the possibility of running into a support group members outside of the meeting environment, which could cause embarrassment. Also, as most face-to-face support groups have planned meeting times, it might be difficult for you to attend each meeting. As an individual you may even feel concerned about your personal appearance when attending a local support group and if a topic may occur that bothers you or you do not feel comfortable talking about it may be difficult to dismiss yourself from the meeting.

If a local support group is not an option because of transportation issues, distance you would have to travel or you find it overwhelming then there are always online support groups. Online support groups are a great way to meet people without them really knowing your true identity. It also gives you the ability to participate at your own convenience, as most online support groups are open to the pubic 24/7. This also allows you to connect with others from other parts of the country unlike face-to-face support groups. Even though you might be part of an online support group you have the ability to participate without leaving messages. Just by reading other people’s comments and stories might be all you need to feel better about your circumstance.

However, there can be some cons to online support groups. As people may make comments the downfall is that you may not know that persons tone of voice as they are talking to you and you might take there comment out of context. Not only might you not know the tone of voice they are using, but what they write could simply be misinterpreted or misread.  Also, as you take part in online support groups you never know if that some people are part of the support group for support or if they are there just there to lurk.

When you are looking for an online support group you can find them through websites and on social networking sites. In the back of this book I will provide you with a list of online support groups that you could visit.  Again, keep your options open. If you have a local support group near you I would suggest trying it out. You might like the feeling that you get to meet others with similar situations as yourself and knowing that they are there to listen to your concerns and give you input.  Plus in the end you might become friends and rely on one another for support like my friend Kathleen and I.

If you gave a face-to-face support group a try and you did not like it, you know that there are always online support groups. For all you know both types of support groups could be helpful for you. What you need to know is that you are not alone and that there is help out there if you need it. By trying a support group whether it is face-to-face or online there is a good chance in the end you will feel better about yourself and know that you are not alone.

You Are Not Alone!

Epilepsy affects 2.2 million Americans and 6.5 million people worldwide. Even though it may not feel that there are that many people with epilepsy. You would be surprised there might be someone right down the street with it.

As I was growing up I was lucky (if you consider it lucky) to have someone at the same elementary school and in the same grade as me who had epilepsy as well. Her name was Kathleen. Kathleen suffered from complex partial seizures like me, but her seizures were not as severe as mine. During this time we became really good friends and could rely on one another for support. As we grew up together in elementary school we treated each other like any other friend. We never compared our seizures or discussed it. Playing and enjoying each others company was more important.

However, after 5^th grade Kathleen moved to Florida. We continued to stay in contact and even to this day we keep in touch with one another. As we grew up we did not let epilepsy get in our way. We would talk about boys, school and what we were doing in life.  Whether one of us has seizures still or not epilepsy is one thing we can talk about.

To this day we will always be able to talk about the challenges that we encounter as women with epilepsy. From talking about the different types of medications we will be on to the challenges we will face in life. At this time in our life we have been talking about pregnancy and being on seizure medications. This is a challenge in itself as taking any anti-convulsant medication is considered high risk for pregnancy. At the same time being on an anti-convulsant to prevent any seizures from happening is important as well because having a seizure during pregnancy can be dangerous to the mother and the unborn baby.

If I had never known Kathleen I do not know who I could talk to about the struggles that I have encountered with epilepsy. Not only do I know I can trust talking to her about epilepsy, but I know that she can relate to me and understand my everyday struggles.  This is why I find it is important to have resources available to you, whether you have a friend with epilepsy or belong to a support group. If you do not know someone with epilepsy you would be surprised by how quickly you could find someone that is experiencing a similar situation as you.

Emotional Instability

The first day back to school was already difficult as it was a new building and I was afraid how people would treat me. The thought of relearning how to use a locker combination, learning my class schedule and knowing what class I should be in was stressful. It was so overwhelming for me that I remember being in school and in tears my first day. However, the hardest part was finding out who my real friends were. I was lucky that I remembered one of my friends prior to my brain surgery and her name was Alexis. I was also fortunate to have a very understanding learning support teacher and other staff members who looked out for me.

My first day at school I went to Alexis’s lunch table she was sitting at to see if I could eat lunch with her. I remember her rejecting me and telling me that she did not think there was enough room for me to sit there so I ended up looking for another table to sit at. Did she feel uncomfortable with me because she knew I had brain surgery or epilepsy or was it the other people at the table who felt uncomfortable? Did the other people at her table not like me?  I eventually ended up finding another table to sit at and in the long run Alexis ended up at the lunch table I was at.

As Eighth grade started out rough by not only finding out who my real friends were, but dealing with unsupportive teachers. In eighth grade I had a new Learning Support teacher. Even though she might of known me from 6^th and 7^th grade, she never had to deal with me till then.

 In October of 1998 it was the first IEP (Individual Education Plan) meeting since my brain surgery. My parents wanted to let the teachers know what the surgery had done for me and what I would need to continue to work on to be successful.  However, during this meeting my new learning support teacher did not like the fact that I did not have any recollection of the summer reading assignment that I had read prior to brain surgery. My parents had explained that prior to surgery I had read the book, but because of having a cluster of seizures and having parts of my brain removed I had no memory of even reading the book. Instead of putting the summer reading to rest the learning support teacher continued to argue that I should have to reread it. In the mean time I was already trying to catch up on work I had missed for being out of school for 2 weeks already.  She then said I should at least write a paragraph about a part in the book or draw a picture. Luckily, my 7^th grade learning support teacher was at this meeting to support my parents and win that battle.

Throughout the year the learning support teacher continued to be unsupportive by not sharing my IEP with my classroom teachers and expecting me to know things when I would simply ask for help. She continued to build a feeling of animosity towards me as well as her friend who was a math teacher. They would tell me that I would not allowed to use any adaptations for a test when it was written specifically in my IEP and would tell me that I was not permitted to be in the classroom when using those accommodations and I was told I had to go to the learning support room. This would continue all through eighth grade.

As I continued to be seizure free I became aware of what teasing felt like. People would say in front of me to their friends “I wish Katrin had a seizure” and laugh. I would learn from my parents that being teased was nothing new. They explained to me that when I was having seizures in the seventh grade my mom told me that depending on the type of seizure I had it caused a major issue that they had to bring it to the principals’ attention. However, it did not stop others from making fun of me.

Being teased really bothered me that I would get upset, which made school very difficult. Not only did I have people surrounding me that made fun of me, but I had a lot on my mind about my past, present and future. At this point I was looking forward to going to high school and starting all over again. This would give me the opportunity to meet new friends and let them meet the person I was now, not the person I was with epilepsy.

When I entered high school it gave me a chance to show people who I was now and to make new friends. This time there were even more students in my grade and half of them would not know of my past history with epilepsy. Nevertheless, I was quiet and afraid to approach people and start a conversation with them. I felt comfortable going to the people who I already knew were my friends and the friends they made, I would talk too.

The beginning of high school did not start out to bad. I enjoyed the change from middle school to high school. However, as it got more into the school year learning new information and doing the homework became more difficult. Not only was learning new material a struggle, but also trying to fit in with my peers had become even more difficult. Most of my peers had there own clichés that they would hang out with and I was not part of one. Also, as they would do school activities after school all I cared about was getting home after a long day in school.

As I would sit in classes 7 hours a day, it made for a long day. All I could think about was what took place in the past when I was having seizures. How was I able to recall all the things I learned if I did not remember learning them? How did I interact with others or how did others interact/treat me? Was I talkative or quiet? The most difficult part was not knowing my sister. All I could think was what was it like when Kirsten was around. At this time I was not only grieving over my past that I did not remember, but the loss of my sister as well.  The long days at school did not make life easy.

Not only did coming to high school mean that I would meet new friends, but I would also meet a whole new group of teachers. As these teachers first met me they would look at me like I was any other student with a learning disability, but in reality it was more then just a learning disability.  Since they did not know me prior to my brain surgery they did not understand my learning difficulties and why learning new material was a struggle for me. Having the teachers understand my background would become a challenge, as they had never dealt with someone who had had brain surgery or an acquired brain injury (ABI). An acquired brain injury is defined as an injury to the brain, which is not hereditary, congenital, degenerative, or induced by birth trauma. An acquired brain injury is an injury to the brain that has occurred after birth. In my case I suffered an ABI from having brain surgery.

Going to school everyday made life hard. I started feeling depressed about life as for most days when I was in school I would be in tears. At this time I was trying to process the loss of my sister. This really had a big affect on me, as I could not recall much of our like together.

My parents had started noticing a difference in me that they talked to my current neurologist about the changes they had seen in me since my brain surgery.  Because I had been doing well with no seizures instead of driving all the way to Hershey Medical Center we would go to a neurologist near by. After further discussion they decided to put me on an anti-depressant to see if it would help. After being on one medication for some time they had not seen a difference in my mood so they thought that seeing a psychologist might help. However, after several attempts of seeing the psychologist my parents did not see any progress being made, as it did not seem like he understood how the brain surgery had an impact on my mood so I stopped seeing him. Nonetheless, my parents and the neurologist would continue to try different medications until they found something that would work.

At this time as I was heading into 10^th grade, the learning support teachers and general education teachers continued to not understand why I was so emotional at times and would need a break from class just to talk to someone. Not only did they not understand my emotional needs, but they still did not understand my needs for learning.  Although I looked like a normal student, inside I was different. Towards the end of 10^th grade my parents saw that my depression was continuing to worsen so I started seeing a psychologist again, but this time my parents found someone that specialized in working with patients with brain injuries.

As I was getting closer to turning 16 I was looking forward to getting my driver’s license because it would finally make me feel like a normal teenager, but because of having brain surgery I had to have a peripheral vision test done to see if it would pass the PA State law requirements. We had known that my brain surgery had given me a greater peripheral vision cut, but at 13 years old, neither my parents nor I thought about how it would affect me later in life.

According to the PA State Law your horizontal visual field must be at least 120 degrees (combined) in the horizontal meridian, excepting the normal blind spots. As I had the test done it showed that my peripheral vision was less then 5 degrees of a normal visual field to the right side, although I had 20/20 vision. If there was a binocular vision test (vision with both eyes), I might pass the test. However there is no equipment that allows binocular vision testing. As a person may be adequately sighted in one eye and still meet the requirements, the license would be restricted to vehicles with outside mirrors that provide a view of the highway for a distance of 200 feet to the rear.

As I was excited about getting my driver’s permit, in the end I did not meet the PA state law requirements. This did not make life easier for me. If anything it made matters worse. Not only was I dealing with the loss of my sister, my past, and be known as the girl that had seizures, but now I would never be able drive.

At this point I had so much to deal with that it almost became unbearable and I resorted to cutting. I hated my life so much that I thought about suicide. Why would it be worth living if I continued to get bad news?  I could not be like most teenagers who get their driver’s license and be independent, I couldn’t remember my childhood or Kirsten and fitting in was not easy, so why suffer. This would be an ongoing process as I had lots of problems that I was dealing with.

Mean while at school, teachers thought I was being over dramatic. When I would approach a teacher/guidance counselor to talk about an issue they would say to me “let it go.” So in order for them to understand me better my parents had my psychologist explain to the teachers how my brain surgery had an impact on me.  As the psychologist and my parents explained to my teachers that when the frontal lobe is removed there is no longer a mood regulator and when you remove a part of the parietal area you have what is called persistence of thought.  Nonetheless, this did not seem to help the teachers better understand me. It was almost like my disability was invisible. Nothing looked wrong with me from the outside, but on the inside is what they could not see.

Memories

Throughout our lives memories are being made, stored and retrieved. Memories are something that should last you a lifetime.  In my case I did not have memories of my childhood growing up. As I continued to be seizure free I had many questions about my past. My parents did not understand why I could not remember my past. As they would ask me questions regarding my past, they learned more and more, that I truly could not recall events that had taken place.  They would ask me if I remembered going on a cruise as a family or even going to the Caribbean. All I could say is “I don’t remember that.”

When I looked back at my childhood there were only a very few events that I could recall. One was when Bredt chased Kirsten from outside all the way to her bedroom and kicking her door, that it indented it. Another memory I have is when we would all go out to dinner on Friday nights as a family or when we would go to my brother’s soccer games up at Penn State university and I would go under the seats to collect plastic cups that had the nittany lion on them.

Why do I have these memories and not others? Part of me wonders if it is because I have a visual of what took place. Was it because it was a unique situation or that it happened more then once? The only other way that I have been able to recall memories is by look through pictures. Is it the same as remembering them; no, but at least when I look at these pictures I can say “oh yea I remember that.” I do not remember the whole event that took place, but I might remember that particular place where the picture was taken. One example is when Kirsten was a cheerleader in high school. When I look at a picture I briefly remember being a part of her cheerleading squad and cheering with her, but I don’t remember it 100%.  I do however; remember being there and knowing that it had taken place. Then there are other pictures that I look at and I don’t remember that event at all.

According to Epilepsy Society and Epilepsy Therapy Project (EPT) it is not unusual for people who have epilepsy to have memory problems. If you have mostly generalized seizures such as absence or tonic-clonic (grand mal) seizure you are less likely to have problems with your thinking then someone who has partial-onset seizures. (Seizures that begin in one area of the brain, often the temporal lobe.) As a result the temporal lobe is responsible for creating memories

Not only can memory problems occur due to the type of seizures you have and the location of where the seizure is being affected, but results of medication can influence your memories. They can also affect the speed at which the brain can process information. The effect of concentration or mood, lack of sleep, age or the effect of epilepsy surgery can also have an impact on your memories.

According to Epilepsy Action memories before a seizure can also be lost, as they have not been fully incorporated into our memory system. During the seizure our memory may also be affected, because of the loss of consciousness can interfere with normal brain processes, disrupting the encoding and storage of information. Memory problems can affect people in different ways; in my case it affected my long-term and short-term memory.  Since I had complex partial seizures that affected the temporal lobe and the doctors had also removed part of that area as well, makes me wonder was it the constant seizures I had, the brain surgery, the high dosage of medication I was on or was it all of it combined?  Regardless what it was it had an affected my memory. 

As most people can remember major events in life, I can’t. Some of the things that happened in life were anywhere from long-term events to a one day event.

One thing I did over a long period of time was play soccer. Although I can recall that I played soccer, there are other things I don’t remember about playing soccer.  I don’t remember the games that I played, how I played, or games that I won. Even though I could tell you the names of the girls on the team, what I couldn’t tell you is how they might of treated me.

Some of the shorter events that most people would remember are vacationing with family. As a family we would go on many trips anywhere from Florida, the Caribbean, to a cruise. None of these trips I can remember even when I look at pictures. I simply do not recall it.

Another event that most girls would never forget is being a flower girl, walking down the aisle, throwing flowers. I can look at the pictures from that beautiful day and see what I looked like back the, but I have no recollection of that event.

One last event that took place was a field trip to Cape Henlopen. This was a huge thing in 7^th grade as we would be away for a week away from our parents. Unfortunately, my camping experience only lasted one day. By the next day I would become toxic from ingredients in my medications, as I was unable to keep food down, including my medications. Maybe it is good that I can’t remember this, but at the same time it was something I will never be able to experience again.

Although, I know these events occurred, it is something I will never be able to know what it really felt like experiencing it. Also as most people will tell stories about there past, this is something I will never be able to do. 

Luckily, I had come out of surgery knowing my math, reading and everyday basics from school, but my past did not remember learning it. How did I know how to write words, blend letters together to make a word or simply how to add? I had no recollection of learning it, but I knew how to do it. Also, I had no clue who my friends were except for one person. So school was not only nervous for me because it was a new building, but it was overwhelming because I did not know who I should hang out with that would accept me for me.

Something more difficult then not remembering my past was the fact that 6 months prior to my brain surgery I had lost my sister, Kirsten. This was not easy for me to accept. I could recall the night that she had passed away and how I had a friend sleep over. That night we were woken up in the middle of the night by a lot of commotion in the house and I recall her sitting in the car not moving. The next thing I can remember is the day of her funeral and my family asking me if there was anything I wanted to say about her. I remember being in tears crying saying “no.” Other then that I have very little memories of her. What did she do with me when I was little? What did she think of me as I had seizures?  What did she like to do for fun? These are things I do not know without asking my parents. This is something I will always wonder about. Was it the seizures that prevented me from remembering things or did the brain surgery take my memories away from me?

Life After Brain Surgery

It was the start of a new me as I returned back home to Pennsylvania. I remember driving home from the airport and going over bumps that hurt my head. It was like a feel of a headache, but it would come and go when my body was moved around like it was in the car.

School had already been back in session when we got back from Miami Children’s Hospital. Since my mom was a school teacher, she had to go back to work. My dad had to head back to work as well since he was out of work for three weeks already. As for myself I was still recovering from brain surgery so my parents had told the school that I would be out for two weeks. Since Vicky, would not be starting school for another week my mom asked her to hang out with me during my time of recuperating.

During the time that I had been at Miami Children’s Hospital I lost 20 pounds. Also from being in a hospital bed for three weeks it made my body very weak. Walking was a hard task for me. That first week was not only resting, but also rebuilding my muscles so I could walk and get back to school.

The following week Vicky had to go back to school so I was on my own. I think I stayed home two days and then I decided I wanted to go back to school because I did not like being home alone, plus I got bored very easily on my own.  So I went back to school the following week and was very nervous.  During the summer they had demolished the old middle school and built a new one. It was a whole new school for me. Not only that, but it was a new life for me too.

Since the brain surgery I showed no signs of any seizures. Not having seizures everyday had made me more aware of my surroundings. Having brain surgery gave me a whole new sense of who I was. At this point I needed to figure out who I was prior to my brain surgery and who I was now.

Brain Surgery

Right before the major surgery Bredt drove down from Pennsylvania with his friend Gretchen that was going to college in Florida.  This not only gave him a chance to say good-bye to Gretchen, but to see me right before surgery. Once he dropped her off at Florida Sate University he came to the hospital to see me. I was excited to see him and have more company. 

 

Bredt and I

 

On Friday August 28^th 1998 I was taken to the operating room for brain surgery. I was placed under general endotracheal anesthesia (loss of the ability to feel pain). The doctors put me on my left side so they could open up the right temporal incision. Since I had gone into surgery with the subdural electrodes still intact, not only did they have to remove them, but they would also have to remove the staples that were keeping my brain enclosed. Once the staples were removed the doctors would open it all the way down to the bone. Once they removed the electrodes on the right side of the brain the doctors irrigated the area closed it with layer of closure of the temporalis fascia, then subcutaneously, and then absorbable sutures to the skin. 

 

Electrodes connected to my brain

 

They then put me on my right side so my left side would be turned uppermost. The doctors would again remove the staples then open up the large left temporal occipital parietal frontal scalp flap and would remove the electrodes. Following this, the dura (the tough outermost membrane enveloping the brain and spinal cord) was opened more posteriorly, and the brain was exposed. The doctors then removed the occipital (deals with vision) and posterior temporal cortex (deals with recognition/processing of speech) to midline structures. The mesial temporal lobe (essential for declarative memory (conscious memory for facts and events) short and long-term memory) structures were also removed by removing the hippocampus. In the end they removed a large porencephalic cyst with large membranes, which had a big impact on my seizure activity. These types of cysts are very rare and form on the cerebral hemisphere, the top of the brain.

After everything that needed to be removed was done they closed the brain up with silk running sutures (92 to be exact). The scalp itself was closed in layers with vicryl and prolene an absorbable, synthetic braided suture that is indicated for skin closure and general soft tissue approximation and ligation. By doing this it would include minimal tissue reactivity and durability. Luckily, my whole head of hair did not need to be shaved off. By braiding my hair they just had to shave the sides around my ears and a small center portion on the top of my head. After over 8 hours of surgery I was taken to the ICU where I would be monitored for 24 hours.

The doctors then talked to my parents and let them know that the surgery went well. They told my mom and dad that there would be a 65% to 75% chance that I would be seizure free. They were told that if a seizure were to recur, it would probably happen within the first six months after surgery. The doctors directed my parents that I should only take 400 mg of Tegretol twice a day compared to 4275 mg of 3 different medications I was on prior to surgery. Also, if I needed anything for pain I was to take Tylenol. They let my parents know that they would want to see me again in 6 months for an update to see how everything was going.  Two days after surgery I was discharged from the hospital and packing up getting ready to fly home.

The night before we left to fly home my parents took me out to one of the many restaurants they went to during their time they spent in Miami. It was an oriental restaurant. When we arrived to the restaurant everyone seemed so frazzled. My parents had asked them what all the commotion was about. The waiter had told us that Jackie Chan had just finished dinner when we got there.  However, we had missed him. Also, since my parents had been to the restaurant before, the staff knew all about me. They were so nervous to meet me because they had never seen someone who had brain surgery. Now that my parents had the chance to take me to the restaurant the staff was very nice to me. The next day we were on our way home to Pennsylvania.

Miami Children's Hospital

The following year my parents and I flew down to Miami Children’s Hospital of Florida. Their staff was made up of many international doctors who came to the United States to specifically work with children and seizures. Miami Children’s Hospital told my parents to expect to stay there for at least three weeks. During which time there would be tests and if all went well I would have two major surgeries. 

So in August of 1998 my parents checked me into Miami Children’s Hospital and they checked themselves into the Key Biscayne Marriott about 10 miles away from the hospital. The medical staff needed to start me back at ground zero since they would need to document and videotape my seizures to have a better understanding of what area of my brain the seizures were coming from.

The first week started out with the staff videotaping me for 24 hours a day with the use of an EEG connected to my scalp. Just like Hershey Medical Center did they slowly weaned me off my medicines until I would have a seizure. That way they would be sure to see what kind of seizures I was having and what part of the brain my seizures were coming from.

This was not a comfortable situation for my parents because when they took me off my medication the year before at Hershey Medical Center I ended up going into code blue. My parents directed the medical staff that as soon as I had a seizure they would have to put me back on my medication because they did not want me going into status nor another code blue. However, after being connected to the EEG machine for two weeks with no signs of any seizure activity they decided they needed to move on with other testing. So as they were removing the electrodes from my head I had a seizure.

Mean while, during my stay at Miami Children’s Hospital I was lucky enough to have my own room. Although it was a Children’s hospital and they allowed parents to sleep there, it was recommended that it was best for my parents to get rest away from the hospital room. My parents would arrive at the hospital at 8:00 in the morning each day and leave around 7 or 8 o’clock at night.

Me and Eeyore

Since I was an active 13 year old who did not like being bored, most of their days involved keeping me entertained. It was difficult to keep me busy since I was connected to so many machines and was not able to leave the bed other than to go to the bathroom. The only other thing I could do was to take a walk with my parents. However, my parents would have to push me in a wheel chair and push the monitor along with me since there were wires connected to my brain and IV’s in my arm. At one point when I was being transferred to a medical procedure one of the many needles in my arm came right out. I specifically remember this as I said, “uh, excuse me.” The staff was in shock how quiet I was as it happened as most children would freak out. 

Connected to wires

When it was time for my parents to leave at night, I did not mind, as the staff was friendly and when they left at night I was tired and ready for bed. My parents would be starving when they left since they had not eaten dinner yet. However, once they had gotten back to the hotel they would call me and say goodnight to me.

The second week in the hospital my neighbor and my babysitter Vicky flew down to see me. This gave my parents a chance to run out and eat lunch or just go back to the hotel to rest, as Vicky or the Child Life Specialist would entertain me. (As a Child Life Specialist they use their knowledge of child development and developmentally appropriate interventions to educate, prepare and support children through difficult tests, procedures and the sometimes drastic changes that happen within their families due to chronic or acute illness, treatment and recovery.) Not only did the Child Life Specialist also give my parents a chance to run out for a bit, as she entertained me, but she would inform my parents of what would be happening with testing and any procedures that would be happening that day.  During my stay at Miami Children’s Hospital one of the games the Child Life Specialist taught me how to play was Mancalla.  This was a game I would end up playing everyday.

Me with the Child Life Specialist

Since I was currently on 4275 milligrams of three different types of anti-convulsant medications to control my seizures, it made me a picky eater. The seizure medications took away my appetite as well as made things taste bad. During this time it made eating food difficult. Even as they decreased my medicine I would only eat certain things and since I was given hospital food everyday, nothing appealed to me. However, one thing I would eat at that time was pickled okra. This was not available in the hospital so my parents would have to run out to the grocery store to get it for me.

After the first 2 weeks week of being hooked up to an EEG and being videotaped, no seizures occurred. Since there were additional test that had to be done the doctors decided it was time to disconnect me from the EEG and move on. Nonetheless, right after they disconnected the EEG machine I had a seizure.

The next day I was scheduled for the last pre surgery test involved a major surgery by opening up my skull and implanting subdural electrodes in the right temporal region via left craniotomy with multiple arrays on the surface and underneath the temporal and occipital lobes.  Subdural electrodes consist of a series of discs that are mounted in thin plastic. They are designed to lie on the surface of the brain. Wires were attached to each of the electrodes and ran to a machine to determine what areas of my brain my seizures were coming from. After the electrodes were placed on my brain I spent the rest of the day in the ICU (intensive care unit).

The next day I was sent back to my room where I was staying. This time I not only had electrodes on my brain, but wires coming out of my brain and head wrapped up in sutures. Later that day two EEG specialists entered the room and explained to my parents that they would hook up sensors to an EEG and the test me with different objects. The plan was to map and measure my brain so the areas of the brain that controlled my senses would not be damaged if brain surgery would transpire. They told my parents ahead of time that while they stimulated a different part of my brain there was a chance that it could cause a seizure.

During the time of this procedure my Dad did not want to be in the room while they tested me. He did not want to see what would happen for fear I would have another seizure and go into status and possibly another cold blue. He also did not want to see me in pain. My mom on the other was brave enough to stay with me while it took place. She had found it interesting to watch because they would show me an object as they stimulated an area of my brain and if the area of the brain was my speech, I could tell the doctors what they were showing me. If it was another area of my brain and I could not tell them what they had in front of me (e.g. pencil) I could not say the word.  Luckily during this time I showed no signs of having a seizure and the testing went fine. After the testing was complete they determined that I was a good candidate for brain surgery.

The third week that I was there, I would have brain surgery. Prior to my surgery the doctors explained to my parents the surgical and non-surgical interventions. As the doctors explained to my parents the choices they had, they also evaluated what the risks of surgery could include, but not be limited to death, increased disability, hemiparesis (partial paralysis affecting only one side of the body), loss of speech, loss of other functions, continued seizure activity, worsening in seizure activity or a need for more surgery. What the doctors could tell my parents prior to the surgery is that I would almost surely have an extension of my superior quadrant field cut to include the inferior field as well, which would give me a homonymous hemianopsia. (The loss of half of the visual field on the same side in both eyes. It occurs frequently in stroke and in traumatic brain injury due to the connections and wiring of the visual system with the brain).

Because this was a huge decision to make my parents seeked out to the international doctors who were testing me, “if it were your daughter what would you do?” Without hesitating and with confidence, they said that they definitely would proceed with the surgery. My parents had agreed that it would be better to take the chance and try to make me seizure free regardless of the outcome. My seizures were not getting any better and my parents knew that I would not have any kind of independence in life if I continued to take seizure mediations without surgical intervention. The fact that my seizures were continuing to worsen overtime made it an easy decision. This was a once in a lifetime opportunity.

I didn't like having my picture taken!