C-EEG Experience

Got home from Cedars-Sinai on Friday. The plan was to originally stay from September 10 to September 12, but stayed until Friday due to a few reasons. Overall, based on the C-EEG, Dr. Chung does not believe the events or episodes I had during the week are epileptic seizures which is a good thing. However, there is still a long road ahead.

On Monday, I checked and was taken up to my room in the North Tower. Once I got to my room, I was taken to a another room where the EEG tech placed the electrodes on my head. Each of the electrodes had wires that attaches on to a central unit which records and transmits the information/data received to a computer which processes the information. The insertion process didn’t take too long, like about 20 minutes. The glue used was somewhat bothersome mainly due to my now more sensitive olfactory.

Once all the electrodes were glued in place, the EEG Tech wrapped my head to hold them in place and to also make it more comfortable for me as well to sleep and lie down. The electrodes, while a bit uncomfortable were surprisingly comfortable. The only somewhat uncomfortable thing was the central unit I had to carry around. The length of the EEG cords to the central unit was only about two feet long. Luckily, the central unit had a loop I could sling onto my shoulder.

 Window view from my bed

Before I went back to my room, Dr. Shaw, a neurologists who works with Dr. Chung stopped by and explained the process. She said that whenever any symptom to press a the button at the end of a small cord extending from the central unit. Although my brain activity will be monitored the entire time, pressing the button will help them in focusing on certain portions of the data collected. Additionally, since my room has both audio and video monitoring, I should also state the symptoms I felt.

My view the majority of the time

So once things were set, I went back to my room and was confined to bed. I was considered a fall-risk patient and therefore I was placed in a “restrained” bed. A restrained bed is when the rails on each side of the bed is raised. Normally, only one rail on either side is raised. Also, since I was a “fall-risk” patient, a nurse or clinical partner always had to be with me whenever I wanted to get out of bed. So yes, even when I wanted to use the restroom. Most of the time, the bed detector alarm was set to go off to give notice to staff in the case someone got out of bed.

Yes, there was a lot of down time.

After settling in, my nurse went through a series of questions such as the types of symptoms I’ve felt, what I’m feeling now, etc…At the end of the questions, I made a remark that at least I won’t be poked this time around. The nurse said sorry and proceeded to stick an IV in me in the case that medication needed to be quickly given to me. It didn’t hurt at all really, but when the IV was stuck into my right forearm, blood gushed out everywhere and some got onto my sheets. I’d never been that much of a bleeder! Well, my sheets were quickly changed.

So I had a TV with basic cable and a Cedars-Sinai exclusive movie channel. And no, none of the movies had Lindsey Lohan in them. I could also use my laptop and any electronic devices. There had been some concern that while I could use my devices, I couldn’t have them charged near me as they might interfere with the EEG readings. However, the nurse cleared the matter up with Dr. Chung and having a charging device near me would not be a problem. Anyway, it turned out that I hardly used my laptop or phone and just read most of the time.

So, the important things. During my stay, I did experience some symptoms. My latest symptom of the week was a faint-like wooziness feeling. During my entire stay, the normal symptoms of the restlessness in my limbs, the heightened ringing in my right ear, and the racing of my heart did not appear. It’s a good thing they haven’t appeared in a while now (past couple of weeks), but I wished they would have just so I can put them to bed whether they are epileptic seizures, or just something else.

Day Five, electrodes without cap

Anyway, Dr. Chung came by every morning for brief chat and indicated that based on the data collected, that my symptoms were not epileptic seizures as my brain activity showed nothing out of the ordinary during my spells. This was good news to me, but also there’s some trepidation there as well. If they aren’t epileptic seizures, then what are they then? Also, just because these spells were not epileptic seizures, it doesn’t completely rule out that my prior spells were not. At this point, the next step is to taper me off my medication and see if that improves things. Since Vimpat has more pronounced side effects than Keppra, such as causing dullness, I will taper off of it first. Once I do, then I’ll taker off of Keppra. So if there aren’t any problems, I may be completely off both meds soon. I’ll be meeting with Dr. Chung again on Sept. 24 and will be receiving my schedule then. At that time, we’ll also go over the C-EEG data in a more detailed fashion.

During my stay, I also met a Dr. Jeffrey Wertheimer, a neuropsychologist at Cedars. As the name suggests, it us used to diagnose any neurological and psychological disorder(s) a person may have. Well, based on the evaluation, the physical manifestations I have aren’t purely psychological. The bad news is that there is an organic medical reason why they occur (e.g., surgery, radiation, medications). So at this point, Dr. Wertheimer agrees that tapering off the meds may help tremendously in alleviating some issues I am having.

National Brain Tumor Society Brain Tumor Walk

I will be participating in the NBTS 5K walk this Saturday at Angels Stadium. The team is aptly named "Team Braingels." The decision to name my team this was actually kind of a difficult decision as I'm a lifelong Dodgers fan. However, I did promise a friend that I would name the team that. The friend unfortunately won't be able to participate this time around, but will be there in spirit.

I posted this event and the fact that I will be participating on my social media sites to raise donations and awareness about the event. There is a bit of anxiety there, the reason being is because not all of my friends and acquaintances know that I have a brain tumor. My posting about the event and my involvement is ambiguous about whether I have a brain tumor, but one can easily add two and two together. Now I have a bit of anxiety about what may come and how to deal with the questions if they do come. 

However, I am looking forward to the event. I had wanted to participate last year, but was in no condition too as I was still recovering from the craniotomy. My family will be participating with me and I also look forward to that.

More Reflections

Around this time last year, I was still adjusting to life post-craniotomy. The couple weeks right after the surgery, I was still somewhat sedated from my pain meds and spent my time just trying to be as pain free as possible. When I finally got off the pain meds and was more lucid, i didn't think things would have been as different as they were.

I remember Mom and Dad took me out to the local mall to get some exercise and the experience was surreal to say the least. Suffice to say, I was wide-eyed staring at this post-craniotomy world. I kept thinking to myself, I just had my head cracked open and a part of my brain removed, and now I'm here in a mall watching people shop. I could not process anything I saw and could not grasp the reality in front of me. Looking at the people walking by and the shops they went into, I didn't know what any of it meant. Even today, I feel like Mal in Inception or Thomas Anderson in The Matrix. Like something doesn't feel right and it's gnawing at me, a little pebble in the shoe, and I can't ignore it.

Living with a Brain Tumor

@TheLizArmy created this which illustrates the title well

Continuous EEG Video Telemetry Scheduled

The Cedars Sinai neurophysiology department called today and I now have a schedule for the continuous EEG video telemetry. It is scheduled for September 10th through the 12th. The stay may be shorter or longer depending on how things go, but the maximum number of days will most likely be five days if necessary.

I am a bit anxious. The EEG should provide a clearer picture of the cause(s) of my ongoing issues with these episodes I've been having. However, I am afraid of the "what if." The what if it doesn't and the unknown path that will come along with this.

Traveling down this long road of uncertainty, anything that provides a perception of certainty is certainly a sight for sore eyes. First it was the needle biopsy which would provide a diagnosis, then it would the craniotomy which would provide a more concrete diagnosis and also resection of the tumor, next came the radiation therapy which was part of the treatment protocol to manage the tumor, and now it's the EEG to assess that my episodes WILL be considered seizures and the established steps will be taken to treat these "seizures."

UC Health System and Blue Shield Come to Insurance Resolution

The UCLA Health Center and Blue Shield finally came to a resolution regarding the insurance flap between the two parties. Just a recap, the last contract between the two parties ended December 31, 2011 and all UC health facilities have been out of Blue Shield's network since then. Suffice to say, this has caused of a lot of stress for me along with, I'm sure, many other patients receiving care at UCLA and other UC health facilities. I am grateful for Blue Shield's Continuity of Care Services waiver program, but it has not been without it's share of problems and heartache. Starting September 1, 2012, the UCLA Health Center and it's affiliates will once again be within Blue Shield's network. The new contract will be effective through June 30, 2015.

At this point, I will remain at Cedars Sinai for now. One reason that has lessened any confusion on my part of whether to go back to UCLA is the good rapport between Dr. Lai and both Drs. Hu and Chung at Cedars. So far, the sharing of information between Cedars and UCLA has been seemless. Dr. Hu and Dr. Chung both know Dr. Lai well and have seem open in including Dr. Lai if need be. I contacted Dr. Lai about the news and he just wants what's best for me.

If for some reason, I do need another biopsy, this will be a tougher dilemma. I have read and heard that Dr. Wu at Cedars is a very well respected neurosurgeon who is also responsive to his patients. However, Dr. Liau at UCLA has set such a high standard that it would be difficult not to go back to her. Additionally, the Ronald Reagan UCLA Medical Center nursing staff also set a  very high standard.

Overall though, I do feel very grateful that I now have choices again and UCLA is again on the table along with UCI and the other UC health facilities.

Meeting with Epileptologst

I met with Dr. Jeffrey Chung at Cedars Sinai this past Monday and his recommendation is to go forward with the continuous EGG video telemetry (V-EEG). This kind of testing requires a person to be admitted into a hospital and be continuously monitored and recorded with a video camera. The advantage of a V-EEG over a regular EEG is that the continuous monitoring can greatly increase the likelihood of "catching" an episode. The video will supplement the EEG readings.

Dr. Chung stated that this is best diagnostic tool to determine whether my episodes are seizures. If my episodes are seizures, the V-EEG can pinpoint and reveal the location and root of the problem. There are certain approaches that can be taken if I do have seizures. One approach is a change in medication that may be better suited in preventing or mitigating the root of my seizures. Apparently there are 20+ anti-seizure meds out there! Another could include surgery, but Dr. Chung said it's too early to start worrying about this therapy and that it is normally reserved for people who have acute gran mal or clonic tonic seizures.
Dr. Chung also stated that my symptoms appear to be somewhat consistent with simple partial seizures (aka, focal seizures). Simple partial seizures do not cause a person to lose consciousness of which I have never had happen to me thankfully. My symptoms that are consistent with this type of seizure include numbness/mushy-like feeling in my limbs, actual weakness of the limbs, rapid heart rate, heightened ringing in my ear, sometimes nausea, and sometimes slight twitching of my limbs.

As I've mentioned and what has been stated to me before by Dr. Lai and reconfirmed by Dr. Chung, is that my episodes may be a combination of seizures, side-effects of the meds, and just result of brain damage from my surgeries and radiation therapy. Simple partial seizures normally lasts no longer than a few minutes, but my episodes normally can last from 30 to 60 minutes. I asked Dr. Chung what if the V-EEG indicates that my episodes aren't seizures and he stated that he didn't want to make too many specific guesses of the next steps until after the V-EEG. He stated that there are just too many possible causes and he didn't want me to worry too much for the moment and that we should take it one step at a time. He was willing to delve into the possibilities, but I agreed about the taking things one step at a time for now. He did add that if my episodes aren't seizures, then I may no longer need to take Keppra and Vimpat. His general approach is, "Why take meds if they don't work?" I completely agree with this.

Of course after my meeting with Dr. Chung, I did some additional research, and apparently V-EEGs are also an effective tool in diagnosing something called non-epileptic pseudo-seizures. As the name suggests, these episodes may seem seizure-like, but are in fact not seizures. The video monitoring is the key here because while a person may be physically displaying a seizure (e.g., stiffened muscles, jerking, etc...), the EEG readings are normal. These types of episodes are also known as psychogenic non-epileptic events and the root of the problem is psychological more than anything physical. Great, just something else to worry about!

Lastly, Dr. Chung recommended that I see a neuropsychologist to have my neurocognitive functions assessed. Neurocognitive functions include memory, mood, higher brain processes, etc...Ideally, I should have had one done back in February last year before my first biopsy to set a baseline, but hindsight is 20/20. Anyway, having a neuropsych evaluation will help in moving forward as it will reveal my neurocognitive strengths and weaknesses and help in the preparation of future possible treatments. It can also help in creating strategies to improve or help my brain to compensate for any deficiencies it might have.

Anyway, for now, his office will try to set up the V-EEG in the next few weeks or so. The testing will require admission to Cedars. Since the EEG will only be effective if it catches one of my episodes, steps will be taken, if necessary, to induce one. The typical protocol to induce an episode includes tapering of my anti-seizure meds and sleep deprivation for a couple of nights. As the video camera will be fixed on my bed, I will for the most part be restricted to my bed. I can use my laptop, but will not be able to charge it near me as it can interfere with the EEG reading. Overall, I will be monitored for 3 to 5 days depending on how it goes. Some have only needed a day, it just all depends. Since my next MRI will be coming up in a couple of weeks, Dr. Chung's office will be contacting Dr. Hu's office to ensure that the MRI includes a few items needed for his purpose. Also, Dr. Chung will contact me regarding setting an appointment to meet with a neuropsychologist.