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.
Friday, August 31, 2012
Sunday, August 19, 2012
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.
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.
Saturday, August 18, 2012
Wednesday, August 15, 2012
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."
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."
Friday, August 10, 2012
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.
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.
Wednesday, August 8, 2012
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.
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.
Saturday, August 4, 2012
1-Year Anniversary of Craniotomy
It was a year ago today I had my craniotomy. The year seems like it's passed by so quickly, but also seems like an eternity ago as well. Here's my schedule for the day:
The last thing I recall before the surgery was being asked by one of the nurses whether I wanted my entire head shaved or not. I remember answering yes, and having both the nurse and my sister laughing stating that it was the correct choice. My next recollection was wondering when the operation was going to start while reaching to scratch an itch on my head. To my great surprise, instead of feeling my hair, I felt the turban wrap instead and thought "???" until I though, "Ohhhhh..."
For the few hours after waking up from the surgery, I felt like a million bucks. I couldn't stop talking and my family and nurses kept having to remind me to take it easy and get some rest. I was full of energy and ready to take on the world, that is until the meds wore off. Things are so hazy...like a dream. Two things I do distinctly remember were the non-stop hiccups I had and the catheter.
Surgery Date: August 4, 2011
Check-in Time: 4:45 AM
Surgery Start Time: 7:30 AM
Surgery End Time: 5-7 hours
Expected Discharge Date: August 7, 2011
Check-in Time: 4:45 AM
Surgery Start Time: 7:30 AM
Surgery End Time: 5-7 hours
Expected Discharge Date: August 7, 2011
The last thing I recall before the surgery was being asked by one of the nurses whether I wanted my entire head shaved or not. I remember answering yes, and having both the nurse and my sister laughing stating that it was the correct choice. My next recollection was wondering when the operation was going to start while reaching to scratch an itch on my head. To my great surprise, instead of feeling my hair, I felt the turban wrap instead and thought "???" until I though, "Ohhhhh..."
 |
| One of my ICU nurses |
For the few hours after waking up from the surgery, I felt like a million bucks. I couldn't stop talking and my family and nurses kept having to remind me to take it easy and get some rest. I was full of energy and ready to take on the world, that is until the meds wore off. Things are so hazy...like a dream. Two things I do distinctly remember were the non-stop hiccups I had and the catheter.
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