I met with Dr. Chung today and he deemed it would be okay for me to get off Keppra. Since our last meeting about 6 months ago, I haven't had many symptoms that would be deemed to be consistent with those of a seizure. There have bouts of dizziness here and there, but they've been less and less frequent and the circumstances surrounding them seemed less related to a seizure-episode.
Per standard protocol in getting off any anti-seizure med, I will be on a tapering schedule. Starting tomorrow, I'll only have to take 500mg from my current 1,000mg for the next two weeks. After this time, I can stop completely. Dr. Chung would have liked me to possibly start the taper schedule a bit later after I told him that I'll be busy at my work for the next few months. He mentioned that typically he prefers for a person to taper off a med during a relatively stress free period because stress could trigger seizure activity. However, I decided to start it now because with my job, there is never really a lull period and if there is, it's really unpredictable when it might occur. So if I waited for a lull period, I could be waiting indefinitely. After stating this, Dr. Chung agreed with me and was okay for me to start the tapering schedule now. He did preface it by stating that for the next one to two months, I should try to get as much rest as possible in order to minimize the chances of seizures occurring.
Well, I think this is a positive step and will see if getting off Keppra will help with things overall (e.g., get rid of fatigue, mental dullness, etc...). I'll be meeting with Dr. Chung again in three months.
Showing posts with label Keppra. Show all posts
Showing posts with label Keppra. Show all posts
Monday, January 13, 2014
Saturday, September 22, 2012
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.
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.
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.
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.
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.
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.
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.
Monday, January 30, 2012
MRI Results
Got my 3-month MRI scan today and also had the follow-up with Dr.
Lai. The good news is that today’s MRI compared to the one from October,
shows a slight shrinkage of the remaining tumor. This is a good sign
because radiation doesn’t always result in shrinkage of the tumor, and
if it does, it normally takes awhile ( at least 2-3 months normally).
So, suffice to say, I was pretty happy to see this.
On the downside, Dr. Lai has again increased my Keppra dosage up to 3,000 mg from 2,500 mg due to my continued issues with simple mini-partial seizures. He also wanted me to switch to the actual Keppra brand from the generic brand (leviteracetam) I have been using to see if it will make a difference. He stated that the actual Keppra brand is normally more accurate in terms of the dosage and would help in ruling out possibly increasing to an even higher dosage. However, this plan to switch to the Keppra brand name was nixed as I recently just had my prescription refilled and have to wait for another 2.5 weeks before I can refill the prescription again. It is disappointing because the plan originally was to try the new 3,000 mg regimen with the Keppra brand for two weeks and check in with Dr. Lai to see if it makes any difference. However, I will go ahead with the 3,000 mg regimen using the generic Keppra prescription that I have.
It took awhile for my body to adjust to the 2,500 mg initially, but once it did after a few weeks, the frequency of seizures went down dramatically starting around mid-December, from 5-8 per day to 5-8 per week. However, for the past two weeks, my seizure activity has increased again and has gone back to about 3-5 episodes per day. I think it might be due to my Keppra prescription turning bad. It had this weird smell emanating from it unlike my previous bottles and my current refill. Fortunately, the severity of the episodes hasn’t gotten any worse. Hoping the increase in the dosage will help. If it does not, it will probably increase to 4,000 mg and if that doesn’t work, then I may need to switch to another anti-convulsant and go see a seizure specialist. Dr. Lai stated that there are generally two types of people who have seizures, those who gets prescribed medication and it works the first time and those who may need to figure out exactly what may work for them (i.e., increase in dosage or change in medication). It seems that I may fall into the latter group. Anyways, will see how the next two week goes. Hopefully, returning to work won't be too much either on the brain.
On the downside, Dr. Lai has again increased my Keppra dosage up to 3,000 mg from 2,500 mg due to my continued issues with simple mini-partial seizures. He also wanted me to switch to the actual Keppra brand from the generic brand (leviteracetam) I have been using to see if it will make a difference. He stated that the actual Keppra brand is normally more accurate in terms of the dosage and would help in ruling out possibly increasing to an even higher dosage. However, this plan to switch to the Keppra brand name was nixed as I recently just had my prescription refilled and have to wait for another 2.5 weeks before I can refill the prescription again. It is disappointing because the plan originally was to try the new 3,000 mg regimen with the Keppra brand for two weeks and check in with Dr. Lai to see if it makes any difference. However, I will go ahead with the 3,000 mg regimen using the generic Keppra prescription that I have.
It took awhile for my body to adjust to the 2,500 mg initially, but once it did after a few weeks, the frequency of seizures went down dramatically starting around mid-December, from 5-8 per day to 5-8 per week. However, for the past two weeks, my seizure activity has increased again and has gone back to about 3-5 episodes per day. I think it might be due to my Keppra prescription turning bad. It had this weird smell emanating from it unlike my previous bottles and my current refill. Fortunately, the severity of the episodes hasn’t gotten any worse. Hoping the increase in the dosage will help. If it does not, it will probably increase to 4,000 mg and if that doesn’t work, then I may need to switch to another anti-convulsant and go see a seizure specialist. Dr. Lai stated that there are generally two types of people who have seizures, those who gets prescribed medication and it works the first time and those who may need to figure out exactly what may work for them (i.e., increase in dosage or change in medication). It seems that I may fall into the latter group. Anyways, will see how the next two week goes. Hopefully, returning to work won't be too much either on the brain.
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