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.