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.
Thursday, June 7, 2012
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.
Monday, May 7, 2012
Tumor May Have Been Present in Late '06
I've always wondered how long the tumor might have been around. It's the one of many questions I suppose that can't be definitively answered. Based on the relative slow growth of the tumor, it may have been around for quite some time now. Since this may be the case, I've found myself pouring over all the little incidences that's occurred over the past several years, well, all the ones I can remember anyway.
So after some long and hard search into my memory bank, it seems that I may have had the tumor as far back as late 2006, early 2007. At that time, I was still living in Cleveland. It was my last year of grad/law school. I'll be honest, that last year, particularly the last semester was pretty tough as I was, let's just say, ready to graduate from school! Anyway, if I recall correctly, towards the end of 2006, early 2007, there were some strange activity that I was having, that looking back to it, may have been telltale signs of a brain tumor. First, there were more than several instances of waking up in the middle of the night and vomiting without any warning. I didn't feel nauseated or anything. At that time, I thought maybe I was just having severe panic attacks although I didn't feel too stressed, not anymore stressed than at any other time during grad/law school. In fact, that last semester was probably the "easiest" semester I had and I was enjoying myself. By that time, I was mostly taking grad classes and was really enjoying my Grad Assistant position. However, who knows, it may have latent panic attacks.
Besides the vomiting, there were also a few instances where I heard voices, almost like a radio program was playing, but I could never pinpoint the source. I even went outside a couple of times in the dead of night in the Cleveland winter, but could never find the source of what I was hearing. The reason it was hard to pinpoint the source was because it seemed like it came from everywhere, but from nowhere as well. It was the strangest thing and only occurred at night. Like the vomiting, I only woke up to these voices in the middle of the night. Also, the voices were always unintelligible.
I must say though that I don't remember any other symptoms associated with these two activities and I don't think both of these things ever happened at the same time. They could have, and I could have had other symptoms accompany them, but I don't remember. Both these things only happened for a few months and then just stopped. They were so strange and up until then, I had never had anything like them. Also, for some reason, I never bothered to do an online search of my symptoms! Maybe if I had had better insurance than just the university health coverage, I could've gone to the Cleveland Clinic to get checked out (yes, I see the irony of it all). My school's health center wasn't the most comprehensive. Of the times I went there, it was mostly always the same type of response, which was, "Just tough it out..."
So after some long and hard search into my memory bank, it seems that I may have had the tumor as far back as late 2006, early 2007. At that time, I was still living in Cleveland. It was my last year of grad/law school. I'll be honest, that last year, particularly the last semester was pretty tough as I was, let's just say, ready to graduate from school! Anyway, if I recall correctly, towards the end of 2006, early 2007, there were some strange activity that I was having, that looking back to it, may have been telltale signs of a brain tumor. First, there were more than several instances of waking up in the middle of the night and vomiting without any warning. I didn't feel nauseated or anything. At that time, I thought maybe I was just having severe panic attacks although I didn't feel too stressed, not anymore stressed than at any other time during grad/law school. In fact, that last semester was probably the "easiest" semester I had and I was enjoying myself. By that time, I was mostly taking grad classes and was really enjoying my Grad Assistant position. However, who knows, it may have latent panic attacks.
Besides the vomiting, there were also a few instances where I heard voices, almost like a radio program was playing, but I could never pinpoint the source. I even went outside a couple of times in the dead of night in the Cleveland winter, but could never find the source of what I was hearing. The reason it was hard to pinpoint the source was because it seemed like it came from everywhere, but from nowhere as well. It was the strangest thing and only occurred at night. Like the vomiting, I only woke up to these voices in the middle of the night. Also, the voices were always unintelligible.
I must say though that I don't remember any other symptoms associated with these two activities and I don't think both of these things ever happened at the same time. They could have, and I could have had other symptoms accompany them, but I don't remember. Both these things only happened for a few months and then just stopped. They were so strange and up until then, I had never had anything like them. Also, for some reason, I never bothered to do an online search of my symptoms! Maybe if I had had better insurance than just the university health coverage, I could've gone to the Cleveland Clinic to get checked out (yes, I see the irony of it all). My school's health center wasn't the most comprehensive. Of the times I went there, it was mostly always the same type of response, which was, "Just tough it out..."
Monday, April 30, 2012
4/30/2012 Follow-Up
Saw Dr. Lai today up at UCLA and generally the news was okay I suppose. Based on the lastest MRI, Dr. Lai believes that the tumor is stable. However, it's hard to tell because as I had my last MRI done at a different facility compared to the lastest MRI, he couldn't do an apples to apples comparison. As he explained it, my latest MRI is finer (i.e., more cross-sections were taken) compared to the MRI done back on January 30, 2012. Therefore, the cross-sections don't quite correspond to each other. Due to this, it was impossible to compare the "same" cross-sections (i.e., layer) to each other.
The disconcerting thing is that the remaining mass seems to have grown a bit. At the longest length, the 1/30 MRI showed the remaining tumor at 1.83 cm. However, the latest MRI showed it to be about 2.3 cm. Again, I am a bit concerned, especially since I had three relatively "bad" seizures just last week. However, I will remain as optimistic as I can and try to be as anxiety free as possible. Dr. Lai's explanation seems to make sense. He said that most likely there hasn't been any growth. That the reason why the lastest MRI shows a bigger tumor is because the 1/30 MRI just missed out on the "fattest" (my own term, not his) part of the tumor as the machine used did not take as many cross-sections compared to the machine used for my latest MRI scan. The cut ratio between the latest MRI and the 1/30 MRI is 2 to 1 (e.g., for every 6 layers/cross-sections the latest MRI takes, the 1/30 MRI only takes 3 layers/cross-sections).
As the MRI machine at UCLA is comparable with the MRI machine used for my latest scan as both have the same cut ratio, Dr. Lai showed me my last MRI taken at UCLA, which was before the radiation treatment. Comparing the lastest MRI to it, there is tumor shrinkage. Looking at the same layer, the tumor based on the UCLA MRI measured about 3.15 cm, while again, the latest MRI shows it at 2.3 cm. This made and makes me feel a bit more at ease. Also, Dr. Lai stated that based on his experience that the discrepancy between the 1/30 and the latest MRI really is just due to the cut ratio and that based on the histology of the tumor, that there shouldn't be that much growth right after just having gone through radiation therapy.
Of course, he did add that I should be extra cognizant of any changes and symptoms I have from now until my next follow-up which is June 25. As usual, he stated for me to make sure to let him know of anything that might be out of the ordinary. Again, so thankful for the UCLA email policy and so thankful that Dr. Lai is so responsive as is most of the UCLA staff and doctors I've come across. Normally, my MRI cycle is every 3 months. However, the next MRI is scheduled for June 25 (at only 2 months) because of the ongoing issue between UCLA and Blue Shield and because my Continuity of Care coverage ends on June 30, 2012. In a way, I'm kind of glad that I'll only have to wait 2 months instead of the 3 months considering everything mentioned above. *Sigh* just more uncertainty. This is definitely a long-distance race and not a sprint, so MUST PACE MYSELF.
Oh, as for the rest of the meeting, a new doctor, Dr. Guzman, a neurologist, accompanied Dr. Lai this time around. I explained to him and Dr. Lai about what I've been experiencing the past several weeks. I explained to them about how recently (about 4 weeks ago), up until a week ago, that my symptoms had been changing every few days it seems. For a couple of days, my symptoms would be more like the classic case of vertigo and nausea, switch back to my more normal symptoms (i.e., flashes of dizziness, wooziness, etc...) for a 2-3 days and then switch back to the vertigo and nausea and so on and so forth.
Last week though, things went back to the norm (i.e., flashes of dizziness), but on Tuesday, I had a relatively prolonged episode. I was sitting reading on my computer when the ringing in my right ear suddenly intensified. It was accompanied by multiple flashes of dizziness and then my head felt really heavy. When I tried to turn my head, it wouldn't budge and felt as if only my brain was turning. These symptoms went on for a good 30-45 minutes and I felt immobilized. Once the symptoms passed, I felt really tired and out of it and it took a good 45 to 60 minutes to recover. Wednesday came and I had my typical dizziness bouts, but nothing out of the ordinary. However, on Thursday, I had the same kind of episode I experienced on Tuesday. It was almost deja vu. I was sitting at the same exact place and it occurred at almost the same exact time while I was reading. Again, had sudden intensified ringing in my right ear accompanied by multiple flashes of dizziness and the heavy head feeling. This time though, the symptoms weren't as strong as Tuesday's and the episode only lasted about 30 minutes and recovery time was about 20 to 30 minutes. I still felt out of it, but not as much as Tuesday. So lastly, on Friday, same thing happened like it did on Tuesday and Thursday. This time, the intensity was more comparable to Tuesday's episode. Also, I had a couple of additional symptoms. My head felt more full and I had a slight headache for a few minutes. I also felt as if my brain was folding in on itself. Additionally, my legs felt sort of weak and mushy. This episode lasted for about 50 minutes and I felt really out of it and tired once again. It took about 45-60 minutes to recover.
As I'll explain, the one main issue right now is trying to figure out whether the cause of my bouts of dizziness and off-centeredness is a central brain issue or my tumor causing seizures, or maybe both! Anyway, Dr. Lai and Dr. Guzman thinks that although my normal symptoms are unclear as to the cause, that the three episodes mentioned above are consistent of what would be a seizure. They were concerned of just how long the episodes went for and the symptoms I had and the fact that I felt so tired afterwards. As of now, they decided that it would be best to keep me on my 3,500 mg Keppra dosage and to also add another anti-seizure drug called Vimpat. It's a newer drug and have similar side-effects to Keppra. It's suppose to be easier on the body (e.g., liver) compared to earlier anti-seizure medications. As with Keppra, I'll have to watch out for increased dizziness (the irony, I know), loss of appetite, personality changes, numbness, etc...Will give it a month and see how it goes and how my body responds to it. Hopefully it will work in controlling the breakthroughs and I won't get a rash like I did with Dilantin. So basically, Dr. Lai wants to stop all breakthroughs (i.e., seizure activity) and hopefully I can ramp down on the Keppra dosage. Again, it's a wait and see approach.
The other item I discussed with Dr. Lai was what to expect if thing take a turn for the worse. It may sound like ignorance on my part, but I wanted to know exactly how someone passes from brain cancer. Long story short, generally as the cancer spreads, it can create a mass effect and push on healthy brain tissue and therefore cause cranial pressure. Though, the process can be different for each person because all brain tumors are unique, what is normally constant is that brain cancer eventually causes a person to go into a coma as it shuts down critical brain functions. If the tumor or swelling results in pressure of the brain stem, then it will cause a person to not be able to swallow. At this point, a person would eventually need to go on life support in order to live as they would not be able to function on their own...
So much to discuss...it's been awhile and much has happened since my last full entry...
On April 3, I had the follow-up with Dr. Wilkinson to get the results and his opinion on the VNG testing. Based on the testing, he felt that my dizziness and whatnot was not due to something being wrong with my vestibular system. He stated that it might therefore be a central brain issue. Basically, there are multiple systems working in unison that goes into creating a person's sense of balance and equilibrium. The three sensory systems include the vestibular (inner ear), ocular (eyes), and somatosensory (feet, ankles, knees). And of course all these three systems work with the brain which is the overseer and controller of our motor functions. So when it's a central brain issue, the basic idea is that the brain is having trouble processing all the information it is receiving from these sensory systems and therefore causes our motor control to be a bit off.
Dr. Wilkinson referred me to England Physical Therapy to have a dynamic posturagraphy test conducted. This test evaluates and assesses how well each of the sensory systems are working and also how well the brain is processing the information. The machine itself is a three-sided booth with a platform in the middle. Each of the walls and platform can move. On my first visit with the PT, PT wanted to look at two things. The PT wanted to see if my balance and dizziness issues are due to a central brain issue or to benign paroxysmal positional vertigo (BPPV). Each of us has small calcium deposits (ear rocks) in our inner ears. BPPV occurs when a small piece breaks free and starts to float around in the inner ear which can send mixed messages to the brain and cause all sorts of problems. It can be caused by head trauma, infection, or brain surgery. The PT first tested for the BPPV by performing something called the Epley maneuver, which is a series of head movements that is suppose to guide the floating debris back into place. the success rate is pretty high based on research I've done. So the first session, this was done and was told to observe whether my symptoms would get better the next couple of days.
Unfortunately it didn't and I stated this to the PT. The PT then had the dynamic posturagraphy test done. The test really threw me off especially when the front wall was only moving subtly. Long story short, the testing indicated that my three sensory systems appears to be working normally. Therefore, it seems that the main culprit is my brain having trouble processing the information it is receiving. The PT said that the most likely causes could be from the surgeries I've had or the radiation therapy or both. So for the past few weeks, I've been going to the PT twice a week and have been given exercises to help compensate for any brain deficiencies I may have. At this point, the PT wants to get to a baseline where we can get a better idea of the cause of my issues. So, after a period where my symptoms should have theoretically improved and I'm still having problems, then maybe we can rule out the brain processing issue and say that the root of my problems is the brain tumor. Or, maybe if there is an improvement with certain functions, but I still have certain kinds of symptoms, then maybe we'll have a more definitive answer or feel more confident in determining that they are caused by the tumor and are seizures, etc...
Overall, at this point, Dr. Lai and Dr. Guzman confirmed my gut feeling that what I have been experiencing may be both seizures and a central brain processing issue caused by the surgeries and radiation treatment. As I mentioned, it is a wait and see and trial and error approach. Down the line, if there still isn't anything concrete that can be drawn, Dr. Lai and Dr. Guzman recommend that I get a video eeg monitoring test done. This test would require me to be admitted for 1-3 days in order to be under constant observation. It would allow my brain activity to be studied and recorded while I have one of my "episodes" which would better enable the docs to determine the root cause.
Whew...long post.
The disconcerting thing is that the remaining mass seems to have grown a bit. At the longest length, the 1/30 MRI showed the remaining tumor at 1.83 cm. However, the latest MRI showed it to be about 2.3 cm. Again, I am a bit concerned, especially since I had three relatively "bad" seizures just last week. However, I will remain as optimistic as I can and try to be as anxiety free as possible. Dr. Lai's explanation seems to make sense. He said that most likely there hasn't been any growth. That the reason why the lastest MRI shows a bigger tumor is because the 1/30 MRI just missed out on the "fattest" (my own term, not his) part of the tumor as the machine used did not take as many cross-sections compared to the machine used for my latest MRI scan. The cut ratio between the latest MRI and the 1/30 MRI is 2 to 1 (e.g., for every 6 layers/cross-sections the latest MRI takes, the 1/30 MRI only takes 3 layers/cross-sections).
As the MRI machine at UCLA is comparable with the MRI machine used for my latest scan as both have the same cut ratio, Dr. Lai showed me my last MRI taken at UCLA, which was before the radiation treatment. Comparing the lastest MRI to it, there is tumor shrinkage. Looking at the same layer, the tumor based on the UCLA MRI measured about 3.15 cm, while again, the latest MRI shows it at 2.3 cm. This made and makes me feel a bit more at ease. Also, Dr. Lai stated that based on his experience that the discrepancy between the 1/30 and the latest MRI really is just due to the cut ratio and that based on the histology of the tumor, that there shouldn't be that much growth right after just having gone through radiation therapy.
Of course, he did add that I should be extra cognizant of any changes and symptoms I have from now until my next follow-up which is June 25. As usual, he stated for me to make sure to let him know of anything that might be out of the ordinary. Again, so thankful for the UCLA email policy and so thankful that Dr. Lai is so responsive as is most of the UCLA staff and doctors I've come across. Normally, my MRI cycle is every 3 months. However, the next MRI is scheduled for June 25 (at only 2 months) because of the ongoing issue between UCLA and Blue Shield and because my Continuity of Care coverage ends on June 30, 2012. In a way, I'm kind of glad that I'll only have to wait 2 months instead of the 3 months considering everything mentioned above. *Sigh* just more uncertainty. This is definitely a long-distance race and not a sprint, so MUST PACE MYSELF.
Oh, as for the rest of the meeting, a new doctor, Dr. Guzman, a neurologist, accompanied Dr. Lai this time around. I explained to him and Dr. Lai about what I've been experiencing the past several weeks. I explained to them about how recently (about 4 weeks ago), up until a week ago, that my symptoms had been changing every few days it seems. For a couple of days, my symptoms would be more like the classic case of vertigo and nausea, switch back to my more normal symptoms (i.e., flashes of dizziness, wooziness, etc...) for a 2-3 days and then switch back to the vertigo and nausea and so on and so forth.
Last week though, things went back to the norm (i.e., flashes of dizziness), but on Tuesday, I had a relatively prolonged episode. I was sitting reading on my computer when the ringing in my right ear suddenly intensified. It was accompanied by multiple flashes of dizziness and then my head felt really heavy. When I tried to turn my head, it wouldn't budge and felt as if only my brain was turning. These symptoms went on for a good 30-45 minutes and I felt immobilized. Once the symptoms passed, I felt really tired and out of it and it took a good 45 to 60 minutes to recover. Wednesday came and I had my typical dizziness bouts, but nothing out of the ordinary. However, on Thursday, I had the same kind of episode I experienced on Tuesday. It was almost deja vu. I was sitting at the same exact place and it occurred at almost the same exact time while I was reading. Again, had sudden intensified ringing in my right ear accompanied by multiple flashes of dizziness and the heavy head feeling. This time though, the symptoms weren't as strong as Tuesday's and the episode only lasted about 30 minutes and recovery time was about 20 to 30 minutes. I still felt out of it, but not as much as Tuesday. So lastly, on Friday, same thing happened like it did on Tuesday and Thursday. This time, the intensity was more comparable to Tuesday's episode. Also, I had a couple of additional symptoms. My head felt more full and I had a slight headache for a few minutes. I also felt as if my brain was folding in on itself. Additionally, my legs felt sort of weak and mushy. This episode lasted for about 50 minutes and I felt really out of it and tired once again. It took about 45-60 minutes to recover.
As I'll explain, the one main issue right now is trying to figure out whether the cause of my bouts of dizziness and off-centeredness is a central brain issue or my tumor causing seizures, or maybe both! Anyway, Dr. Lai and Dr. Guzman thinks that although my normal symptoms are unclear as to the cause, that the three episodes mentioned above are consistent of what would be a seizure. They were concerned of just how long the episodes went for and the symptoms I had and the fact that I felt so tired afterwards. As of now, they decided that it would be best to keep me on my 3,500 mg Keppra dosage and to also add another anti-seizure drug called Vimpat. It's a newer drug and have similar side-effects to Keppra. It's suppose to be easier on the body (e.g., liver) compared to earlier anti-seizure medications. As with Keppra, I'll have to watch out for increased dizziness (the irony, I know), loss of appetite, personality changes, numbness, etc...Will give it a month and see how it goes and how my body responds to it. Hopefully it will work in controlling the breakthroughs and I won't get a rash like I did with Dilantin. So basically, Dr. Lai wants to stop all breakthroughs (i.e., seizure activity) and hopefully I can ramp down on the Keppra dosage. Again, it's a wait and see approach.
The other item I discussed with Dr. Lai was what to expect if thing take a turn for the worse. It may sound like ignorance on my part, but I wanted to know exactly how someone passes from brain cancer. Long story short, generally as the cancer spreads, it can create a mass effect and push on healthy brain tissue and therefore cause cranial pressure. Though, the process can be different for each person because all brain tumors are unique, what is normally constant is that brain cancer eventually causes a person to go into a coma as it shuts down critical brain functions. If the tumor or swelling results in pressure of the brain stem, then it will cause a person to not be able to swallow. At this point, a person would eventually need to go on life support in order to live as they would not be able to function on their own...
So much to discuss...it's been awhile and much has happened since my last full entry...
On April 3, I had the follow-up with Dr. Wilkinson to get the results and his opinion on the VNG testing. Based on the testing, he felt that my dizziness and whatnot was not due to something being wrong with my vestibular system. He stated that it might therefore be a central brain issue. Basically, there are multiple systems working in unison that goes into creating a person's sense of balance and equilibrium. The three sensory systems include the vestibular (inner ear), ocular (eyes), and somatosensory (feet, ankles, knees). And of course all these three systems work with the brain which is the overseer and controller of our motor functions. So when it's a central brain issue, the basic idea is that the brain is having trouble processing all the information it is receiving from these sensory systems and therefore causes our motor control to be a bit off.
Dr. Wilkinson referred me to England Physical Therapy to have a dynamic posturagraphy test conducted. This test evaluates and assesses how well each of the sensory systems are working and also how well the brain is processing the information. The machine itself is a three-sided booth with a platform in the middle. Each of the walls and platform can move. On my first visit with the PT, PT wanted to look at two things. The PT wanted to see if my balance and dizziness issues are due to a central brain issue or to benign paroxysmal positional vertigo (BPPV). Each of us has small calcium deposits (ear rocks) in our inner ears. BPPV occurs when a small piece breaks free and starts to float around in the inner ear which can send mixed messages to the brain and cause all sorts of problems. It can be caused by head trauma, infection, or brain surgery. The PT first tested for the BPPV by performing something called the Epley maneuver, which is a series of head movements that is suppose to guide the floating debris back into place. the success rate is pretty high based on research I've done. So the first session, this was done and was told to observe whether my symptoms would get better the next couple of days.
Unfortunately it didn't and I stated this to the PT. The PT then had the dynamic posturagraphy test done. The test really threw me off especially when the front wall was only moving subtly. Long story short, the testing indicated that my three sensory systems appears to be working normally. Therefore, it seems that the main culprit is my brain having trouble processing the information it is receiving. The PT said that the most likely causes could be from the surgeries I've had or the radiation therapy or both. So for the past few weeks, I've been going to the PT twice a week and have been given exercises to help compensate for any brain deficiencies I may have. At this point, the PT wants to get to a baseline where we can get a better idea of the cause of my issues. So, after a period where my symptoms should have theoretically improved and I'm still having problems, then maybe we can rule out the brain processing issue and say that the root of my problems is the brain tumor. Or, maybe if there is an improvement with certain functions, but I still have certain kinds of symptoms, then maybe we'll have a more definitive answer or feel more confident in determining that they are caused by the tumor and are seizures, etc...
Overall, at this point, Dr. Lai and Dr. Guzman confirmed my gut feeling that what I have been experiencing may be both seizures and a central brain processing issue caused by the surgeries and radiation treatment. As I mentioned, it is a wait and see and trial and error approach. Down the line, if there still isn't anything concrete that can be drawn, Dr. Lai and Dr. Guzman recommend that I get a video eeg monitoring test done. This test would require me to be admitted for 1-3 days in order to be under constant observation. It would allow my brain activity to be studied and recorded while I have one of my "episodes" which would better enable the docs to determine the root cause.
Whew...long post.
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