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.
Wednesday, August 8, 2012
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.
Tuesday, July 17, 2012
Brief Summary
A brief summary of what's been going on.
June (throughout) - Increased "episodic" activity
June 25 - Met with Dr. Lai for the last time to review my MRI scan which revealed everything stable though there were somethings that were disconcerting, probably due to my own concerns because of increased activity. From various cuts and angles, the tumor seemed slightly bigger. However, comparisons for April MRI to June MRI did not exactly match. Here is scan sent to me by Dr. Lai a couple days after our meeting. So thankful to have Dr. Lai as my doctor. This assuaged things somewhat.
So this was my last meeting as UCLA and Blue Shield have not yet come to terms on a new contract. We spoke about my options and I decided to go to Cedars Sinai. Dr. Lai agreed it's probably the best place to go. He knows several doctors over there and have good rapport with them so the exchange of information will be easier. The doctors Dr. Lai recommended were Dr. Hu (neuro-onco) and Dr. Chung (epileptologist).
July 10 - Met with Dr. Jethro Hu at Cedars for the first time. Dr. Hu will be my neuro-oncologist moving forward from here. Based upon his review of my scans, he also believed my tumor is stable. It's a relief to know that his opinion is consistent with Dr. Lai's. My next appointment with him is scheduled for August 21 of which I will also have my next MRI scan. Dr. Hu also increased the Vimpat dosage from 300mg up to 400mg to see if it might help with containing these episodes. So far it seems to have as my episodes have come down a bit. Haven't had one the past few days.
I'll be meeting with Dr. Chung on August 6 to discuss about my ongoing episodes and to see if a continuous video EEG will be needed. A C-EEG is where a person is hooked up and monitored for a 24-hour or longer period of time. This type of EEG may better determine if a person's episodes are seizures or not. The longer monitoring duration in itself increases the chances of "catching" a person's episodes. This, therefore, permits monitoring of a person's brain activity during their episode to determine if the activity is a seizure or something else.
June (throughout) - Increased "episodic" activity
June 25 - Met with Dr. Lai for the last time to review my MRI scan which revealed everything stable though there were somethings that were disconcerting, probably due to my own concerns because of increased activity. From various cuts and angles, the tumor seemed slightly bigger. However, comparisons for April MRI to June MRI did not exactly match. Here is scan sent to me by Dr. Lai a couple days after our meeting. So thankful to have Dr. Lai as my doctor. This assuaged things somewhat.
So this was my last meeting as UCLA and Blue Shield have not yet come to terms on a new contract. We spoke about my options and I decided to go to Cedars Sinai. Dr. Lai agreed it's probably the best place to go. He knows several doctors over there and have good rapport with them so the exchange of information will be easier. The doctors Dr. Lai recommended were Dr. Hu (neuro-onco) and Dr. Chung (epileptologist).
July 10 - Met with Dr. Jethro Hu at Cedars for the first time. Dr. Hu will be my neuro-oncologist moving forward from here. Based upon his review of my scans, he also believed my tumor is stable. It's a relief to know that his opinion is consistent with Dr. Lai's. My next appointment with him is scheduled for August 21 of which I will also have my next MRI scan. Dr. Hu also increased the Vimpat dosage from 300mg up to 400mg to see if it might help with containing these episodes. So far it seems to have as my episodes have come down a bit. Haven't had one the past few days.
I'll be meeting with Dr. Chung on August 6 to discuss about my ongoing episodes and to see if a continuous video EEG will be needed. A C-EEG is where a person is hooked up and monitored for a 24-hour or longer period of time. This type of EEG may better determine if a person's episodes are seizures or not. The longer monitoring duration in itself increases the chances of "catching" a person's episodes. This, therefore, permits monitoring of a person's brain activity during their episode to determine if the activity is a seizure or something else.
Thursday, June 7, 2012
Random Thought About Euthanasia and State Mandated Health Insurance
With so much hoopla about Obamacare the past couple of years and what not, I wonder why people don't speak more about allowing a person the right to die if he or she elects to do so. It's the other side of the coin that no one seems to talk about, especially those who are against Obamacare and state mandated health insurance in general.
The elephant in the room (at least to me anyway) is, if the state won't allow a person the right to die, then the state should provide meaningful health insurance for that person. However, if the state doesn't want to provide meaningful health insurance for said person, shouldn't the state allow the person to die if he or she wishes to? If a person's right to die is taken away by the state, the person should be afforded health care to ease the person's burden, be it mental or physical, or both! If the state is not willing to provide said health insurance, then the state should allow the person to die.
As of right now, a person who may be suffering from whatever ailment can't elect to be euthanized, but also does not have state mandated access to health insurance either. In a way, this is a Catch 22 and a form of torture in my eyes. So a person might argue that everyone has the right to get health insurance on their own, that there is no law out there preventing a person from buying health insurance. My rebuttal is that, for many of these people who would consider euthansia, they are most likely already at that point where their health condition does not allow for them to earn any sort of meaningful income that would allow them to receive the care they need via with or without insurance. Also, the people who fall into this category would likely fall into the dreaded "pre-existing" category. Any person, once placed into this "pre-existing" category, can pretty much forget about finding affordable insurance. What's the point of just living if all a person is living for is to pay off medical bills? Living hell...
Anyway, the courts under the 14th Amendment have allowed passive euthanasia (i.e., refusing treatment, such as pulling a respiration, etc...), but have yet to definitively tackle on active euthanasia in a direct and meaningful way. Courts have this uncanny ability to make a ruling on an issue while skirting around the real issue. Anyway, courts have by default ruled in favor of states. The states' position have always been that it is in their best interest to not allow their citizens to actively take their own lives. And this goes back to my original point. If a state is not willing to pay or provide people meaningful health insurance to make them better, then the state should also not force the person to live either. It's a simple concept...So simple that it's hardly ever spoken about.
The elephant in the room (at least to me anyway) is, if the state won't allow a person the right to die, then the state should provide meaningful health insurance for that person. However, if the state doesn't want to provide meaningful health insurance for said person, shouldn't the state allow the person to die if he or she wishes to? If a person's right to die is taken away by the state, the person should be afforded health care to ease the person's burden, be it mental or physical, or both! If the state is not willing to provide said health insurance, then the state should allow the person to die.
As of right now, a person who may be suffering from whatever ailment can't elect to be euthanized, but also does not have state mandated access to health insurance either. In a way, this is a Catch 22 and a form of torture in my eyes. So a person might argue that everyone has the right to get health insurance on their own, that there is no law out there preventing a person from buying health insurance. My rebuttal is that, for many of these people who would consider euthansia, they are most likely already at that point where their health condition does not allow for them to earn any sort of meaningful income that would allow them to receive the care they need via with or without insurance. Also, the people who fall into this category would likely fall into the dreaded "pre-existing" category. Any person, once placed into this "pre-existing" category, can pretty much forget about finding affordable insurance. What's the point of just living if all a person is living for is to pay off medical bills? Living hell...
Anyway, the courts under the 14th Amendment have allowed passive euthanasia (i.e., refusing treatment, such as pulling a respiration, etc...), but have yet to definitively tackle on active euthanasia in a direct and meaningful way. Courts have this uncanny ability to make a ruling on an issue while skirting around the real issue. Anyway, courts have by default ruled in favor of states. The states' position have always been that it is in their best interest to not allow their citizens to actively take their own lives. And this goes back to my original point. If a state is not willing to pay or provide people meaningful health insurance to make them better, then the state should also not force the person to live either. It's a simple concept...So simple that it's hardly ever spoken about.
Monday, June 4, 2012
Sorry everyone, but this will be somewhat of a morbid post. Last week I attended my eldest Nephew's high school graduation. There's a lot of meaning there as we have a long history. I have never thought of him as a nephew, but always as a son or my little brother. I am so very proud of him...
So this is where it gets kind of morbid and sad. As one of the students was giving a speech and I was looking at all the bright young and hopeful faces of the graduates, a sadness befell over me. I kept thinking to myself, "Oh my god, one of these kids, these kids, so hopeful and in a way so naive and looking towards to the future is going to have his or her life shattered by cancer..."
Was it wrong of me to have this thought? No one deserves this, I kept thinking, no one deserves what I am going through, no one deserves what any person afflicted with cancer, no matter if brain, or liver, or pancreatic, has to go through...I just remember feeling very sad that one of these kids and many kids graduating this year all across America will one day learn that they have cancer.
So this is where it gets kind of morbid and sad. As one of the students was giving a speech and I was looking at all the bright young and hopeful faces of the graduates, a sadness befell over me. I kept thinking to myself, "Oh my god, one of these kids, these kids, so hopeful and in a way so naive and looking towards to the future is going to have his or her life shattered by cancer..."
Was it wrong of me to have this thought? No one deserves this, I kept thinking, no one deserves what I am going through, no one deserves what any person afflicted with cancer, no matter if brain, or liver, or pancreatic, has to go through...I just remember feeling very sad that one of these kids and many kids graduating this year all across America will one day learn that they have cancer.
Sunday, May 27, 2012
Everything has been tasting like milk to me the past week. It doesn't matter what it is. It ranges from solid foods, to fruit smoothies, to water. The last one is the worst as it tastes really thick especially when at room temperature. Thankfully a warm cup of water is "okay" and having some ice cubes makes it a bit better as well.
Also been having this weird pain starting from the leftside of the base of my skull that shoots down the neck then over to my left shoulder. At first I thought maybe I just slept wrong and just strained a neck muscle, but it definitely doesn't feel like it. It's just this dull pain that's always there no matter whether I move or not.
I wonder if these two things are related to the Vimpat I am taking. In the classic case of the internet being a person's best friend and their worst enemy, in doing a search, I came upon Fibromyalgia and a list of its symptoms. I don't know, there were definitely a lot of them that I checked off. I read that men only account for 10 to 20 percent of all reported cases. With my luck lately, I may fall into that, or more likely, this will be another item I can toss into the "uncertain" bin. Anyway, I may bring it up to my doc.
Also been having this weird pain starting from the leftside of the base of my skull that shoots down the neck then over to my left shoulder. At first I thought maybe I just slept wrong and just strained a neck muscle, but it definitely doesn't feel like it. It's just this dull pain that's always there no matter whether I move or not.
I wonder if these two things are related to the Vimpat I am taking. In the classic case of the internet being a person's best friend and their worst enemy, in doing a search, I came upon Fibromyalgia and a list of its symptoms. I don't know, there were definitely a lot of them that I checked off. I read that men only account for 10 to 20 percent of all reported cases. With my luck lately, I may fall into that, or more likely, this will be another item I can toss into the "uncertain" bin. Anyway, I may bring it up to my doc.
Wednesday, May 16, 2012
Not really related to my tumor, well, not directly, but was thinking about the brother that I never knew and got really emotional today. The brother I am speaking of was my parents' first born, but passed away before his first birthday back in the old country. He was sick the day he was born and my parents never gave him a name. So I've been thinking about him a lot lately and wondering how things would be if he lived. If he had lived, I most likely would not be here. I would trade my life for his in an instant if I could and I wish I could. I have a feeling that my family would be better off if he was living today. My mom has said that he looked like my father which is a good thing. My dad in his younger years was a rather fashionable and handsome guy (just think a cross between James Dean and a young Elvis), which to the dismay of my mom, did not pass on to myself and my living brother (lol). I have always wondered what he would have been like. Would he have been kind, be the type of son my parents would be proud of? Would he have found a great wife and have wonderful kids and be the bearer of the family legacy??? Would he have been a great brother to my sister and my brother, someone that they would look up to?
It's odd, my mom always tells us of her run in with a lady back in the old country before the passing of my eldest brother. The lady was a fortune teller of sort. Having never met my mom, she mentioned to my mom that she was sorry about my brother's condiion and that he was not meant to be born to my mom and that is why he was sick. She stated that he will pass, but not to worry because he was not meant to be with my parents in the first place. She went on to say that my mom and dad were suppose to have a daughter first, that she will be as healthy as a child can be, and that my folks will only have three children. Lastly, she also mentioned that in the not too distant future that my mom will travel to a very far off place, a place that my mom never thought about. Well, it turns out that the next child my parents had turned out to be my sister who was healthy as a mule, then when the old country fell to the North Vietnamese forces, my parents ended up here in the US. They then had me, their third child. Their second child is my living brother.
Anyway, I think my eldest brother would have made my parents really proud. He would be 40 years old going on to 41 later in the year. If he had survived, then I probably wouldn't be around and wouldn't worry my folks due to my brain tumor. Having this brain tumor now, I sometimes think, what was the point of taking away my eldest brother just to have me come down with this tumor. I understand that life is just what it is, but it can be unfair at times...*sigh* As I stated, I have always wished my brother had lived and none more so than now.
It's odd, my mom always tells us of her run in with a lady back in the old country before the passing of my eldest brother. The lady was a fortune teller of sort. Having never met my mom, she mentioned to my mom that she was sorry about my brother's condiion and that he was not meant to be born to my mom and that is why he was sick. She stated that he will pass, but not to worry because he was not meant to be with my parents in the first place. She went on to say that my mom and dad were suppose to have a daughter first, that she will be as healthy as a child can be, and that my folks will only have three children. Lastly, she also mentioned that in the not too distant future that my mom will travel to a very far off place, a place that my mom never thought about. Well, it turns out that the next child my parents had turned out to be my sister who was healthy as a mule, then when the old country fell to the North Vietnamese forces, my parents ended up here in the US. They then had me, their third child. Their second child is my living brother.
Anyway, I think my eldest brother would have made my parents really proud. He would be 40 years old going on to 41 later in the year. If he had survived, then I probably wouldn't be around and wouldn't worry my folks due to my brain tumor. Having this brain tumor now, I sometimes think, what was the point of taking away my eldest brother just to have me come down with this tumor. I understand that life is just what it is, but it can be unfair at times...*sigh* As I stated, I have always wished my brother had lived and none more so than now.
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