Quick Update

My case wasn’t presented to the tumor board this week because the doctors whom Dr. Wagle would like get opinions from were not there. The two neurosurgeons are Dr. Linda Liau and Dr. Bob Shafa. I’ve read really good things about both, especially Dr. Liau. They will be there next week, so my case will be presented then. I am hopeful and encouraged though moving forward that my case will be overseen by such esteemed doctors.

Still waiting on the MRI scan and PET scan. The latter can take sometime as it normally requires prior approval from the insurance company. Hopefully next week. However, in the mean time, I was able to drop off my tissue samples yesterday to Dr. Wagle.

The Keppra seems to be doing it’s job so far though I do feel really fatigued as expected. I do feel feel a bit off-centered as well, but I think it’s another side-effect. Before, the dizzy spells and lightheadness would kind of come in waves, but that’s no longer the case. Both side-effects should improve and diminish as my body gets use to the medication.

Needle Biopsy Photos

Pics from my needle biopsy and first hospital stay back in February.

Typical Day Spent Before the Needle Biopsy

View from hospital room

Having breakfast in the critical care unit

Incision with staples

Staples removed!

UCLA Neurology

So on June 15th, I had my first meeting with UCLA. I met with a Dr. Perrin Pleninger from the neurology department. We went over my scans and she spent time explaining to me what we were looking at and things she was looking out for. She first focused on my “splenium” lesion. She said that based on my history, my EEG, and what she saw on the MRI scans, that the lesion is nothing more than a random spot in my brain and that it’s most likely nothing more. She said that my case doesn’t fit with someone who might have an autoimmune issue or issues with encephalitis or meningitis. She conferred with some of her other colleagues and they all came to the same conclusions. Suffice to say, I was pretty happy to hear this.

However, as for the lesion in my right temporal parietal lobe, she didn’t want to say too much about it and preferred that I see someone from the neuro-oncology department of which I was able to get an appointment this past Monday. I didn’t think I would get an appointment for at least a couple of weeks, so I felt very fortunate to be able to get one so soon. Dr. Pleninger explained that there is this multidisciplinary group called the “tumor board” made up of doctors from neurosurgery, neurology, radiation oncology, and and pathology that meets every Wednesday to review patients case files. It’s almost like have 3rd, 4th, and 5th opinions all in one sitting.

The one thing that did cause Dr. Pleninger some concern are the dizzy spells and lightheadness I’ve been having the past two weeks. I’ve also had a numbness sensation on the right side of my face, but only twice though and it lasted for just a couple minutes each time. However, I believe this might stem from the biopsy moreso than anything. It still hasn’t fully recovered yet and I still have some issues with it. Also, because the lesion is in the right side of my brain, it would affect the left side, not the right. Anyway, Dr. Pleninger said that what I’ve been experiencing might be mini-seizures, but is not sure if they might be a precursor to a more acute episode. The disheartening thing, or positive thing depending how it’s viewed is when she said that she’s really surprised I haven’t had a more acute episode considering the location and size of my lesion. She brought up that it might be a good idea for me to go on Keppra. She was concerned not only for my safety while driving, but for others as well. However, the decision was left up to me at that point, I think mainly because I hadn’t had an experience where I was disoriented and felt not in control. I decided to wait since my dizziness and lightheadness had gotten a little better the past couple of days and my appointment with neuro-oncology was near.

So on June 20, I met with Dr. Naveed Wagle from neuro-oncology. Similar to my meeting with Dr. Pleninger, we went over my history although since he had already taken a review of my MRI scan beforehand, we did not review it together. After going through everything, Dr. Wagle felt that the best course of action would be to have another biopsy performed. He believes that everything points to the lesion possibly being a low grade glioma, instead of the hamartoma which is the initial diagnosis. However, he said that it’s difficult to tell because the tissues taken in the first biopsy appear inconclusive based on the pathology report. However, he said that he would take my case to the tumor board to have it reviewed and to get a consensus of the next step to be taken. Also, at this point, he went and brought in another neuro-oncologist, Dr. Albert Lai. Dr. Lai repeated the same sentiments of Dr. Wagle and also proceeded to lay out course of action for the short-term that I could start now. First, they would like me to have a PET scan and another follow-up MRI. Also, they would like me to obtain the sample tissues extracted from my biopsy to have the UCLA neuro-pathologist examine them. Dr. Lai laid out two possible paths that could happen. He said that in order for them to feel confident that the lesion is not a low-grade glioma and therefore not needing a biopsy, the PET scan would have to be negative, the follow-up MRI would have to show shrinkage of the lesion, and the pathology report would have to be favorable. However, both Drs. Wagle and Lai feels this outcome to be unlikely. However, they both stressed that they’ll know more after the meeting with the tumor board.

In further talking with them, they both recommended that I start on anti-seizure medication. They both believe, similar to Dr. Pleninger, that what I’ve been experiencing the past few weeks were mini-partial seizures. Also as mentioned by Dr. Pleninger, both Drs. Lai and Wagle both said that the location of my tumor couldn’t have been located in a more perfect place that would provoke seizures. They stressed that for my well-being and those of others that I begin to take Keppra as soon as possible. So now I am on Keppra. Some of the side effects include fatigue (the most common), irritability, dizziness, and mood swings. Just taking it for a day, I already felt the fatigue and the dizziness that it can bring. However, it should pass after a month or so as my body adjusts to the medication. The more serious side effects is thoughts of suicide and destructive behavior. I’ll have to as my family and people I see on a regular basis to watch out for any signs.

Anyway, as of now, I am waiting for neuro-oncology to call me back regarding the scheduling of my MRI and PET scan and also on what the board decides. I am nervous, but I think I am ready to face whatever may come my way…

Post-Needle Biopsy

In April, I had my first follow-up MRI. Unfortunately, I had to go with another neurosurgeon as I found out that my original neurosurgeon, Dr. Nguyen, is not within my insurance provider network. The first neurologist I ended up seeing to get the results of my follow-up MRI to see if anything’s changed did not work out unfortunately. So I made an appointment to see another neurosurgeon, Dr. Devin Binder, whom I met last week. For this first follow-up the best news would be that the temporal-parietal lesion has not grown and that the splenium lesion would have reduced in size.

Dr. Binder brought up the MRI scans on his computer and we went over everything. I hold him how the operating neurosurgeon believes the temporal-parietal lesion to be a hamartoma. After looking at and considering everything, he told me that in his opinion, it’s not a hamartoma, and that as it stands, it is inconclusive as to what it might be. Looking at my follow-up MRI, he pointed out that the area in which the samples were taken were from the upper portion/fringe of the lesion instead of in the middle. He felt that this may have been the reason why the sample taken seems not very definitive. He ended up recommending that I have an open biopsy done to remove up to about 75% of the lesion. Or course I indicated to him that I very hesitant about this. Just from my first biopsy which was relatively non-invasive, it’s taken me awhile to recover, and I still don’t feel fully all there. I can only imagine how it will be after this recommended procedure, one that I really don’t want to go through. Luckily, as it seems to be slow growing, I’ve decided to seek an opinion from UCLA neurology as it’s only a month away. It was suppose to be my 2nd opinion for which I had scheduled back in late February, but now has become the de facto third opinion.

Anyway, since this whole thing has started, it’s been kind of difficult to cope with things. I’ve found focusing and concentrating on tasks hard to do. I don’t know if the biopsy is the cause of it or just the lack of sleep from worrying about everything, but I have noticed that my memory has gotten just a tad worse, and that I’ve been having a bit of trouble with conveying a clear and concise thought. At work, over half of the time, my mind is just wandering and racing at times thinking about a possible ticking time bomb in my head. I’ve tried to put on a brave face and act like my normal self, but in truth, I know nothing is normal and I’m not the same person. It doesn’t get any easier because I am a person who internalizes everything and sure enough, I haven’t really spoken much to people about anything really because I don’t want to burden them with my problems. When I have reached out, it’s hard too because they don’t exactly know what you’re going through. I don’t know if it’s the right approach, but I feel like this is a journey I am to take alone. Well, I am anxious to see what UCLA neurology has to say and to see if an open biopsy really is needed. I hope not, and I hope an alternative can be found.

My Story

This is my way of documenting what I’ve been going through this year. I am using this as a means to express some of my thoughts and also as a way to update friends and family.

Back in February of this year (2011), after coming back from Fresno for General Vang Pao’s funeral, I came down with a bad case of the stomach flu of all things that started on a Tuesday. It was bad, but the symptoms I felt were rather typical (body aches, headache, and of course diarrhea). However after the second day, my headaches went from run-of-the-mill to as if lightning bolts were going off in my head. I ended up first seeing my family physician and eventually went to the ER that Friday when my headaches didn’t dissipate even after my other stomach flu symptoms were gone.

My stay in the ER was about 4 hours long. About 1-2 hours in, with my IV drip and all, I felt much better. During this time, the PA (physician’s assistant) came to talk to me and to see if I still had wanted a CT scan. The PA felt that since I was feeling much better, that I probably didn’t need one. Thinking that I had already been there awhile, I figured, why not go ahead and have the scan ordered up, it couldn’t hurt right? I went ahead and got the scan. Come the 4th hour, the IV bag was about done and I’m thinking about what I’m going to have for dinner and was expecting to go home. That’s when the PA came by and delivered the bad news. She said that the CT scan showed a couple of dark spots in my brain and that I would need to get admitted and to have an MRI done. I was sort of in disbelief. The seriousness of it all didn’t really hit me until the ER nurses, who had pretty much been ignoring me for the most part (which was completely understandable as they were swamped that day and there were a lot more people that needed their attention than I did) started to really be attentive. I was moved from the chair I had been sitting in the ER hallway up until that point into a bed and it sunk in even more.

After my MRI, Dr. Tien T. Nguyen, the attending neurosurgeon came by and said that I have a 3cm sized lesion in the right medial temporal-parietal region of my brain that might be an astrocytoma. He also said that I had a smaller 1.5 cm sized lesion in the splenium of the corpus callosum, which he couldn’t really identify. He went through the options with me and recommended that a stereostatic biopsy be done on the lesion in the temporal-parietal. He also mentioned that he thought about doing a biopsy on the splenium lesion, but that two biopsies was too risky. I agreed to this and the procedure was scheduled in a few days for the following Tuesday.

The days in between were filled with a lot of bloodwork and observation and also with various doctors from infection disease and neurology trying to figure out what the splenium lesion was. A thought was that it might be caused by a rota-virus, but nothing was conclusive. The doctors felt that the best way to possibly determine the cause was to do a spinal tap. I couldn’t believe where I was. Just a few days ago all I could think about was meeting my deadlines for work and now I’m admitted in a hospital, scheduled for a brain biopsy, and now a spinal tap. The beginning of the week before I got the stomach flu felt like an eternity ago. Up to this point, I was okay, but the thought of the spinal tap really put me on edge and I realized that nothing would be the same again. However, a few hours before my scheduled spinal tap, I was told that it wasn’t going to be necessary for the moment and a wait and observe approach would be taken instead. I was relieved to say the least. For some reason, the thought of a needle being inserted into my spine was a much scarier proposition than one being inserted into my brain!

On that Tuesday evening, I had the biopsy performed. I believe it started at about 7:00 PM and I ended up waking in recovery around 10:30 PM or so. My last memory was staring up at the operating room lights fully aware and lucid and then waking up in recovery. I don’t remember anything else. The neurosurgeon told me that he had to make a few passes as the first pass didn’t acquire the needed tissue sample. After being discharged from the hospital, I met with my neurosurgeon about a week later for the follow-up. I do have to say though that Bridget and Warren, the two nurses who looked after me in recovery, were both excellent. Beyond excellent really. I owe them a lot for the care and attention they provided and I can’t really thank them enough.

So going back to my follow-up meeting with Dr. Nguyen, he removed my staples and told me that it wasn’t malignant. I asked him if it was an astrocytoma, and he said no and that he believes it’s a hamartoma. So instead of radiation therapy, he suggested just periodic MRI scans every two months to observe for any changes. Regarding the splenium lesion, he still believed it odd, but estimated that it might just be temporary inflamed brain tissue brought on by my stomach flu and that it should reduce or be gone by the time of the first follow-up MRI.