September 13, 2012

BRAIN MAPPING BEFORE EPILEPSY SURGERY


In March 2010, part of my Left Temporal Lobe was removed in an attempt to reduce my seizures.  In a previous post, I described the Wada test and how I “failed” it.  Basically, my doctor froze each side of my brain and found speech was dominant on both sides.  So before any part of my left temporal lobe could be removed, they would need to create a map.  Below I have used epilepsy.com to define brain mapping, and have included actual video from my brain mapping experience.  


What is electrical brain mapping?
Electrical brain mapping is a technique by which physicians use direct stimulation of the brain to determine the specific function of a particular area. During the procedure, a current is applied to a very small area of the brain’s surface. The current is not painful and cannot be felt by the patient, but it interferes with how the area normally works. Once the current stops, that part of the brain resumes its usual activity.
At each location within a brain region, the physician starts by applying the lowest current. Gradually the current is increased until a preset maximum is reached, or until a significant response is seen. Then a new location in that region is chosen and the physician starts over with the lowest current. Each location is tested in this way to create an accurate "map" of functions present within that region of the patient’s brain.

What functions are mapped electrically?
Typically areas that have language, motor, sensory, or visual function are mapped. By applying current to just one area at a time, the doctor learns what each area does. For example, if a current causes the patient to stop speaking, or to speak in a way that can't be understood, then that area is likely to be important for language function. If a patient’s limbs, trunk, or face start and stop moving with the current, the area being tested is a motor area and is responsible for movement. If the patient feels tingling, numbness, or a sensation of movement in a body part when current is applied, a sensory area has been discovered. On rare occasions, brain mapping can be customized to test for other functions and in other areas. 

How is the two-stage brain mapping procedure done?
During the first stage, a surgeon creates an opening in the skull and exposes the surface of the brain. No brain tissue is removed, but small electrical contacts, or electrodes, are placed over the surface of the brain. Once these electrodes are in place, the scalp is closed. The patient then returns to a hospital bed and is closely monitored. The electrodes not only record the patient’s seizures electrically (thereby allowing physicians to identify where the seizures start), but also allow mapping of brain areas under the electrodes. During this kind of mapping (called extraoperative brain mapping because it happens outside the operating room), the patient is always awake and conscious. He or she is able to participate fully during the mapping. The completeness of the final map is limited only by the number and location of the electrodes that were placed on the brain’s surface.

The second stage of surgery, which may be several days later, is when the surgeon performs a second operation and removes the abnormal brain tissue, using the information gathered from the electrical recordings and the brain mapping.

How is the brain mapped during surgery?
Electrical brain mapping can also be performed during any surgery that exposes part of the brain. This is called intraoperative brain mapping because it occurs during an operation. Using a small electrical probe, the surgeon tests locations on the brain’s surface one after another to create a map of functions. Any number of locations can be tested. In this kind of mapping, areas involved with movement can be identified electrically even if the patient is under anesthesia. To map areas that have functions such as language, sensation, or vision, however, the patient must actively participate. If this kind of mapping is needed, the patient is awakened from anesthesia and is given enough medications to stop pain. Intraoperative mapping is often done when previous extraoperative mapping found important functions very close to the area targeted for surgery.

How long will the brain mapping procedure take?
The length of the mapping procedure depends on how much brain tissue is targeted for surgery, how many locations need to be tested, and what kind of functions are expected in those areas. Mapping may last anywhere from an hour to several hours. 

What are the risks of electrical brain mapping?
Brain mapping has few risks. The main risk, especially for people with epilepsy, is that a seizure may be triggered. The areas being mapped are usually close to where the patient’s seizures ordinarily begin. Electrical currents applied in this location can set off a seizure. Physicians pay close attention to the patient’s brainwaves during the stimulation. If electrical discharges that could build up to a seizure are seen, stimulation is immediately stopped. Some of these discharges can be stopped immediately by giving an additional brief pulse of current to the same area. If the area being mapped is very irritable, the patient is often given a powerful anti-seizure medication before receiving any further electrical stimulation. If a patient does have a seizure, mapping is temporarily stopped until the patient has fully recovered. 

There is a relatively small risk of pain during electrical stimulation. Even though the brain itself does not sense the currents, an electrode occasionally makes contact with the membranes surrounding the brain. At these locations, the patient may feel pain or a tingling sensation when the current is applied. Since the physician always starts at a low current, these contacts are easily identified and avoided.

epilepsy.com/ Topic Editor: Howard L. Weiner, M.D.


March 21, 2012

TWO YEARS AFTER LEFT TEMPORAL LOBE EPILEPSY SURGERY

In March 2010, my wife and I started a video documentary to record my experience with epilepsy surgery.  These recordings were created for ourselves to keep close family and friends up-to-date on how I was doing.  We had tried sites like CaringBridge.org and emails before, but it was too complicated to keep everyone going back to the site, many people did not like reading my page long emails all of the time.  The YouTube channel seemed to be the easiest outlet for sharing my experiences, but I never expected it to get viewed by thousands of others. Especially people just like me, in the same situation or at least was considering surgery.  I was amazed that before surgery I couldn’t find anyone to talk to about my epilepsy situation, and now people were finding ME!  After that it became my mission to show people what surgery was like for me… just as person with real pain, real seizures, and hard decisions to make…as realistic as possible.

March 17, 2012, two years after surgery, I have a much easier time telling people about the good parts and the bad parts of surgery.  Some of the things surgery gave me was a feeling like I am starting a new life.  I lost some weight.  I smiled more, and spoke much more… sometimes too much.  I wanted to be seizure free forever!
    
But the surgery took a toll on my memory.  During the surgery, I had a complication and my Wernicke’s area was affected.  I remember the moment during surgery, since I was awake, that I was unable to answer the doctor’s questions.  I remember being put back to sleep and waking up unable to remember people’s names.  After meeting with a speech therapist I found out that I lost names of places, animals, and foods, too.  Speech therapy was hard, but it did improve things. 

Here is a video of me hours after LT Lobe Brain Surgery:


Then the seizures started.  It was about 6 months after surgery, when I had a short partial seizure.  I was quite surprised when it happened, and upset.  I immediately started to cry.  I was told by my doctor that having one seizure after surgery wasn’t unexpected, and that it does happen to a lot of people.  We raised my medications and that worked for about a year.

October 2012, I started to have more seizures again.  This time I had 4 seizures in two weeks.  After raising my medication yet another 2 times, my body had had enough.  I was having more side-effects.  Every day I was eating tons of food just to keep from getting dizzy.   The world would spin constantly, and I would be on the ground passed out.  It was just too much.  Finally, I said I can’t handle it! The doctor decreased the dose.

Of course, without that extra medication I started having seizures again.  My doctor told me the chance of another FDA approved medication working was slim.  So, he gave me the option to start a new experimental medication that he said is working for other patients of his. 

In January 2012, I signed up for the clinical trial of medication YKP3089.  So far, I have been logging my seizures every day for the last 2 months.  This is for a base line reading to see if I even qualify for the trial.  I have to have at least 4 seizures a month, which I am exceeding by over 15 a month.  This is a phase 2 clinical trial so there is a 50/50 chance that I may be put on a placebo instead of the real medication. 

For my 2 year video update, I wish I could have been excited and screaming joy, but realistically, my epilepsy is still here, and I am still fighting it. It’s hard!  Trying to live day-by- day is tough, but I am trying to stay positive.  I hope others out there can know my story and will stay positive, too.  We can’t give into epilepsy!!! 

Check out my 2 year update:

March 12, 2012

BE A FRIEND TO A PERSON WITH EPILEPSY

As a person with intractable epilepsy I know how lonely, isolating, and confusing it is to have a chronic illness.  When friends reach out, it is sometimes the only reason to try to hang in there one more day.  I think it is very important to have support and to be treated as a person, despite my disabilities.  Besides knowing first aid procedures, and seizure safety, here are some suggestions on how to be a good friend to a person with epilepsy:


1.  Many times I have been hospitalized and I have received cards and gifts from family and friends.  It brightens my spirit and lets me know I’m not alone.  However, when I’m not at the hospital, it’s easy for everyone to forget that I’m still ill. If you know that someone with a chronic illness is having a flare up of more seizures or is depressed, or just because, send them a card or a gift – it’s doesn’t have to be much!  Just the thought will make their day.

2.  It is always nice to have a friend who keeps other people from flying off the handle when I’m having a seizure that is a typical non-emergency seizure.  Whenever I had a seizure in public my friend who would say: "Oh... that's just Dave off doin' his thing. He'll be back in a few minutes!" That alone saved me so many unnecessary trips in an ambulance!


3.  Seizures are not predictable.  ALWAYS be prepared for the unexpected.
 
4.  Just listen . . . until it hurts to not say anything. And then listen some more. People with epilepsy often feel they cannot burden others around them.  Let them know they can talk and you want to listen.

5.  Understand that people with epilepsy live in a constant state of making decisions for which there is no guarantee we are making the right choice.

6.  Educate yourself!  Look up epilepsy online and try to learn more about it.  It helps you understand what I’m dealing with a lot better, but don’t use your new knowledge to try to correct what I am living with everyday.

7.  Don’t forget about our caregivers!  Many of us are looked after by our spouses, parents, or even children.  Giving our caregivers a break and asking “how are you doing?” will help.




8.  Never say “maybe you’re not that sick after all” or minimize or trivialize my symptoms with epilepsy in any way.  People with epilepsy have had enough of this from the incompetent doctors when seeking a diagnosis!

9.  Accept that a chronic illness is lifelong and will not go away. If we are just learning to accept it, don’t tell us the illness is winning and we’re giving in to it.  This is our reality!

10.  Do not NOT invite me to events because you don’t think I’ll be able to come.  Having epilepsy is isolating enough without feeling like you’ve been forgotten about completely.

11.  If a person with epilepsy has to stop working or receives disability benefits never say “Well, aren’t you lucky. I’d love to sit on the sofa all day and get money for it.” Most of us would LOVE to be able to work and be INDEPENDENT!

12.  If a person with epilepsy misses a special event, don’t be grumpy about it.  Call and ask if you can bring some photos over to tell them all about it. Letting them know it’s ok if they couldn’t be there on that day.

13.  Recognize that various epilepsy medications can affect behavior causing EXTREME tiredness or other symptoms that effect mood.  If a person with epilepsy does or says something rude or hurtful, give them the benefit of the doubt.  They may well be horrified afterwards.

14.  If they need to cry, let them and just be there for them.  Never say “don’t cry” or “this isn’t worth crying about”.
 
15.  Finally, please don’t tell us about your brother’s niece’s cousin’s best friend who tried a cure for the same illness and. . . (you know the rest)!


March 7, 2012

MY DESCRIPTION OF A GRAND MAL (GTC) SEIZURE

Recently, I watched a short film called “A Seizure by Nathan Jones”.  It briefly shows what it is like to have a grand mal seizure through Nathan’s eyes.  As a person who has had multiple grand mal seizures, I was 
astounded at how similar his experience was to my own.

I usually have an aura just a few seconds before I pass out.  My aura is a loud ringing, hollow sounds, or sometimes I hear multiple voices.  I always try and fight it, I tell everyone to “shut up” so I can battle what is about to happen to me.   Then I put my arms out, ready to fight!

Well…fighting it usually doesn’t work. I never win.  Without my control my head, left arm, and body turns to the right…and my eyes roll into the back of my head.  Bam! The last thing I feel is my lungs tighten and I can’t get in any oxygen.  To everyone else this sounds like a loud distinctive scream…

My brain has been overloaded.  I cannot describe what happens during those few minutes. Even though my eyes are “open” I don’t remember seeing anything during the seizure.  I shake all over.  My lips and my body turns blue…I cannot breathe.  I choke on my spit and blood from biting my tongue.  Without the help of someone turning me on my side, I know I could die.  But I can’t ask for help.

When the shaking stops, my body is weak.  My face is bloodshot from the lack of oxygen.  I start to breathe heavily, it sounds as if I am snoring.  If someone is there with me I can hear them tell me I just had a seizure, and everything will be ok.  If a person is not there telling me, I don’t know what just happened. It feels as if I am dreaming, but I'm not.

I feel pain all over now. Every muscle has been convulsing as if I had been lifting weights for hours without stopping.  My spine has been twisted and my scoliosis hurts so bad that it takes weeks to recover.  I can speak a little now, and the ones who watch over me look so scared, I still did not understand why… it will be hours before I will.

My wife recorded a video documentary before I had a brain resection surgery.  Below you can see what it is like for me to have side-effects from my medications and have seizures.  The last section shows what a grand mal seizure is like for me.  It is a graphic video… so my face has been blocked during the GTC since it is so hard for her to see me turn blue.


    
Also, check out A Seizure by Nathan Jones.  Every seizure is different, but his video will give you a pretty good idea what it is like having a grand mal if you have never had one yourself.  If you have had a seizure before, tell me what it was like for you!


February 20, 2012

THE WADA TEST

In 2010, I made the choice to have brain surgery since medication was not controlling my epilepsy.  Before I could have surgery, I needed to have some invasive testing done.  I already had two in-hospital video EEGs (one with sphenoidal electrodes and one without), 3 MRIs, a PET scan, and every type of blood test you can think of.  So the thought of a WADA test where half of my brain was to be “frozen” was the most bizarre thing I had ever heard of. 

The “Wada” test or Intracarotid Sodium Amobarbital Procedure (ISAP), was named after its creator, the epileptologist Juhn Atsushi Wada, in Japan.  This test is used to determine which side of the brain controls language and memory functions.  The test starts with an angiogram which is an X-ray that uses a special dye and camera to take pictures of the blood flow in the vessels of the brain.  After the angiogram, a medication is injected into one side of the carotid artery disabling one side of the brain.  As that side is “frozen” neurological testing is done to estimate memory and language of the “non-frozen side”.  The reverse is performed about 10 minutes later.  

I recorded a video describing my experience and the results of my WADA testing…You can watch this YouTube video below to see how it went: (I apologize for using curse words in this video; prior to surgery I was pretty negative about my situation.) 



For more information about the Wada Test check out these websites!

Brain blood vessels, 3D angiogram Credit: ZEPHYR/SCIENCE PHOTO LIBRARY Caption: Brain blood vessels. Coloured 3D lateral angiogram (blood vessel X-ray) of the blood vessels in the brain of a healthy 32-year-old. The blood vessel in the neck is the left internal carotid artery. The cerebral arteries (orange) are shown with the cerebral veins (blue). This image was produced by Digital Subtraction Angiography (DSA), using a contrast medium to highlight the blood vessels.




February 13, 2012

TO MY VALENTINE, EMILY


­­­I know this blog is meant for talking about my epilepsy, but for Valentine’s Day I want to talk about my wife Emily.  She is the most important woman in my life… Happy Valentine’s Day Babe!


Twelve years ago, you asked me to hang out with you after school, and even though I was really shy I came over… It was the best decision I ever made!  I got to spend time with you, and you let me get to know you.  From that day forward, we have spent almost every day with each other.  From our first kiss, to prom, to getting our apartment together… time has sure flown by.  I still feel like that was yesterday.

I know my epilepsy has affected the way our lives have turned out.  When we should have been having a family, you were fighting to stop my seizures.  When my medications did not work, and my neurologists were saying NO to surgery you did not give up on me.  You said get a second opinion.  Everything happens for a reason, and you knew there had to be a way to fix me.  You spent months on end trying to find a better hospital and better doctors to help me, and it worked.  I couldn’t have gone through my surgery without you.

Emily… you are my angel.  You have stood by me.  I don’t know how you did it, but you did.  When I couldn’t remember and couldn’t be understood.  You took care of me day by day.

You saved me!!  You helped me to share my story.  You held the camera to show everyone what surgery is all about, because people just don’t know.  You are the toughest woman I have ever met!

There is no one like you out there.  You are unique, one of a kind, and spectacular!

My babe Emily… I love you!
David

Be sure to tell the person or people in your life just how much they mean to you today!  Thanks so much for reading!  

February 6, 2012

TRYING TO REMEMBER

It is funny how the brain works.  Some people can remember everything.  My wife is one of those people.  I can ask her what happened this time last year, and she can tell me a whole story as if it was yesterday.  There are only small parts of my life that I can recall on my own.  I’ve had to piece together my life through other people’s stories, pictures, and videos.  Even then it feels as if it didn’t really happen.
      
My sister reminded me of the first time she noticed my memory problems.  I was in the basement with her and I wanted to clean the floor, but I could not remember the name “broom”.  I was holding the broom in my hands, and I asked her what it was called.  She thought I was joking, but I really could not remember.
    
It is not just words that I can’t remember sometimes.  I have also had years of memories and major events that I can’t recall.  A lot of these memories I lost when my seizures were out of control, before my brain surgery.  I’ve tried to piece together my life in pictures, but there are some things that you just can’t get back in photos.  For instance, I forgot my wedding day.  No, it wasn’t because I was drunk.  It was because there was so much going on I was overloaded.  I had at least 5 partial seizures, and nothing stuck in my brain.  Someday, I wish to really remember what happened on my own, but its been 5 years now and nothing has come back, so I told my wife we will just have to redo it. J

I always have to prepare in my head what I want to say before I say it.  For years, I just thought it was easier not to talk instead of saying something stupid.  Now, I’ve learned to accept the way that I am.
 
After my resection surgery on my left temporal lobe, my memory got even worse.  A lot of my problems are with names of objects like foods, animals, and people.  I often can describe the object that I am thinking of, but I just can’t think of the name.  I was told after surgery this is called Aphasia, and with speech therapy it can get better, but seizures can make even new memories disconnect.

Its hard seeing my family getting older, and I still feel as if I am young.  My memories of people are not as they are today, but as they were years ago.  It is difficult not being understood, and I am trying my hardest to express myself.  Someday I hope to gain complete freedom from my seizures so that I can remember every day from here on out, so I can feel real.         

January 26, 2012

I HAVE DRUG RESISTANT EPILEPSY


Definition: Failure of adequate trials of 2 tolerated and appropriately
chosen and used antiepileptic drugs (whether as monotherapies or in
combination) to achieve sustained seizure freedom.

On December 11, 2009 at the American Epilepsy Society 63rd Annual Scientific Conference an International League Against Epilepsy task force developed a global definition for drug-resistant epilepsy to improving the way difficult-to-treat patients are cared for. It is estimated that one-third of patients continue to have seizures despite treatment.

I am one of them.

In 2000, after I had my first seizure I was prescribed Diastat which is a rectal gel that is issued in an emergency situation to stop cluster seizures. I have never had to use it because I was sent to the hospital during my second seizure and was shot with Diazepam to stop seizing. It worked well that day… knocked me right out.

I was diagnosed with epilepsy after having 4 seizures within 2 weeks. Then, I started my first everyday medication Dilantin. It worked fine for about 5 years, but after time its major side effect for me was it depleted my Calcium and Vitamin D. I was never told to take vitamins and at 22 years old I was already showing signs of osteoporosis.

I was re-evaluated by a neurologist who took me off of Dilantin in October 2006. I then suffered one of the worst seizures I had ever had January 2007. I was immediately put back on Dilantin and started Topamax as well. On Topamax, the whole left side of my body went numb and everything I ate tasted like metal. Not to mention, I started having partial seizures which the medications were not controlling.

My neurologist was not equipped to handle my situation, so she took me off of Topamax and referred me to an epileptologist. He prescribed Tegretol XR which I tolerated pretty well, except it was doing nothing to stop my partial seizures. So he tried Zonegran. It was the worst medication I have ever tried. I am a very calm and easy going person, and on that drug I punched walls, screamed, and went into manic episodes. My wife and I had to call the emergency line at the hospital to get me taken off of it within 3 weeks.

By 2009, I started to consider brain surgery, however I still needed to find a medication that I could tolerate. Keppra was given to me by my second epileptologist. Again, I continued to have seizures and I was so depressed. Apparently, Keppra makes that worse. I didn’t feel real, and as the dosage increased it got worse. I was on a combination of Tegretol, Keppra, and Lamictal with no stoppage of seizures, when my epileptologist decided to try Vimpat.

I spent 2007 to 2009 having seizures constantly. A combination of Vimpat and Lamictal helped get me through my surgery in March 2010. It had been the only drug combination that had ever decreased my partial seizures. After the surgery, I was seizure free for a year and a half. Last month I was given the max dose of both drugs to try and stop some break through seizures. It didn’t work. I felt so nauseated, dizzy and high that I could not function during the day. Apparently, I have grown an intolerance to the medications. I told my doctor that I can’t live like this anymore. I have had brain surgery. I have been on so many medications, and it is getting old.

He decided to decrease the medications to relieve my side-effects, and I felt great!!!

Well…Now the seizures are back…

Monday, January 23, 2012, I became a candidate for another drug trial. At this time, my doctor believes FDA approved medications cannot help me. YKP3089 C013 in phase II testing I’ve been told is helping people like me…people with intractable epilepsy. I am going to possibly start the drug next month. We shall see…

January 16, 2012

Seizures After Surgery? Was Surgery Worth It?


Yesterday I had 2 more seizures since my Left Temporal Lobe Resection Surgery on March 17, 2010. That brings my total amount of seizures to 7, and I am wondering how common it is to have a re-occurrence of seizures after surgery?

I have met many people on Facebook who are seizure free after surgery, and others who have had their seizures reduced, and then others who said the surgery did nothing to stop their seizures. I would like to get as much information about this as possible to help others make an informed decision when choosing surgery.

At this point, I am still grateful for my reduction in seizures. I knew in my situation I was never going to stop taking medication, and I had only a 40% chance of stopping my seizures all together. What do you think? Have you had seizures after surgery? Was the surgery worth it? Please comment below.

January 4, 2012

MY DIAGNOSIS: EPILEPSY

After my first seizure doctors did not give me medication. They could not determine what had caused it, and I was told that one seizure could be a onetime occurrence. Unfortunately, my seizures continued.

My second seizure happened when I was eating pizza with Emily, my future wife. After having a few bites, I felt this overwhelming feeling. I screamed for Emily to shut up, but it wasn’t her talking…it was all in my head. Then, I felt as if I couldn’t breathe. I fell to the floor and lost consciousness. Emily told me my head fell in between a wall and a metal air-conditioning intake vent. She knew not to restrain me, but my head was hitting the vent hard so she put her arm under my head so that it wouldn’t get hurt. She was also told how to administer Diastat, but there was no way for her to turn me over. She couldn’t move her arm out from under my head, so she just screamed for my sister to call for an ambulance.

The ambulance crew came to haul me away again, but this time I don’t remember the trip to the hospital. I had two more seizures at the hospital. The third one happened after my dad came to see me. My dad and I are not very close, and this seizure scared him pretty bad. He screamed for a doctor to help me as he tried to keep me from falling off the gurney. After that seizure, I was told the doctors gave me Valium to knock me out.

I was in and out of consciousness for a while but I remember being taken in for an MRI. That is when I realized I was in a children’s hospital. The hallways were so colorful and there were children everywhere. I felt like I woke up in Wonderland. I was so out of it… lol. I remember falling asleep during most of my testing, even my first EEG. I was in the hospital for a few days, and most of them were a blur.

It wasn’t until I left the hospital that it sunk in what had happened. I was told that I have epilepsy, and the only thing I could do to stop my seizures was to take medication EVERY DAY. At the time that was Dilantin. I was just beginning to know what it felt like to have epilepsy. For instance, for 2 weeks after I was released from the hospital my mom kept a baby monitor in my room, just in case I was to have another seizure at night. I had to wear a necklace that told everyone that I was an epileptic. I was told that I couldn’t get a license for a year, and at 17 that was all I wanted. I was even told not to play my favorite computer games, because it could trigger another seizure. Back then, I was not interested in knowing more about epilepsy. I just knew it sucked.

Fortunately, Dilantin worked for about six years and during that time I was able to live a pretty normal life. I moved out with Emily and we started our lives together. I was able to get computer certified and I supported myself and Emily as she went to college. After a while, Dilantin had taken its toll on my body, especially my bones throughout the years. No one ever told me to take vitamins and I was already starting to have osteoporosis in 2007. That is when I was re-evaluated by a new neurologist and epilepsy became so much more intrusive and stopping my seizures was not the only thing I had to worry about.