So last Wednesday, I had my first meeting with UCLA. I met with a Dr. 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 Monday, I met with Dr. 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 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 500 mg, 2x a day of Keppra. Just taking it for a day, I can already feel the fatigue and the dizziness that it can bring. However, hopefully it will pass after a month or so as my body adjusts to the medication. I’ll just have to be wary of the more serious potential side effects and will have to ask 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…