Pre-Op Testing Done

Was up at UCLA again today for an MRI scan. The funny thing is that I actually kinda fell asleep during the MRI scan. Don’t know if this is a good or bad thing. However, this was my last bit of testing before my surgery next Thursday.

Since I had some time before my CD copy would be ready, I went over to check out the Ronald Reagan UCLA Medical Center to get some familiarity with it. I have to say that the ground level halls are massive. Anyway, I’m glad I went. Was able to find the waiting room (aka. “Maddie’s Room”) and map out where to go come Thursday. Will probably go again Wednesday night with my folks and my sister to get them familiarized with the hospital as well.

As of now, next Tuesday (8/2) will be my last day at work before I go on medical leave. I spoke with my workplace in terms of what paperwork needed to fill out and some other logistical items that I will need to do before my leave starts. So for these next few days at work, I’ll be trying to wrap up a couple of projects, clean my office and box up my items (for my company’s move in September), and enjoy some time with family and friends. Again, why do I feel like these are my last days before going to prison…ha

Scheduled Open Biopsy

After meeting again with Dr. Lai along with Dr. Piccioni on Monday and Dr. Liau on Tuesday, I have decided to go with the open biopsy procedure. It is scheduled for August 4 and will be performed by Dr. Liau at Ronald Reagan UCLA Medical Center.

I met with Dr. Lai and Dr. Piccioni after my MRI scan. Although my MRI scan shows little to no change of the lesion, Dr. Lai still believes that the best course of action right would be resection of the lesion. It would provide the most definitive path in determining what the lesion might be and what treatment if any, would be required. Dr. Liau shares the same opinion as do the other members of the tumor board she consulted with. Dr. Liau added that removing as much as possible now would greatly reduce the chance of complications in the future. She also added that there might be a good chance that removal of the lesion would also reduce or eliminate altogether the possibility of seizures and therefore I would no longer need to take Keppra.

All indications based on the MRI scan points to the lesion as most likely a low-grade tumor of some sort (most likely a glioma). Dr. Liau explained that any abnormalities in the brain can be attributed to either gliosis (scar tissue), cortical dysplasia (extra clump of brain tissue), or a tumor. However, based on the MRI scans, the two former have been ruled out because the lesion does not match their characteristics. If it were the two former, a likely path would be a wait and see approach to see if they result in any physical symptoms such as seizures. As it seems likely to be a low grade tumor, the best course of action I believe is to take it out because 1) I can stop wondering what the lesion is, 2) it will provide a more definitive answer and course of action, and 3) it would likely decrease any possible future complications should the lesion become aggressive (which can happen). There can be complications and a small chance the procedure may result in irreparable mental deficits. I only hope I am making the right decision.

So there are a few things for me to do in the next coming weeks (it’s coming up so soon!). Dr. Liau would still like for me to get the DOPA PET scan done along with some brain mapping to help with the biopsy. I may also need to possibly do an autologous blood donation (self donation) as well. Additionally, there is some paperwork to prepare and I’ll need to prepare the FMLA and SDI applications as well. So much to think about and do on top of my work responsibilities…

Tumor Board Update

This past Wednesday, Dr. Wagle presented my case to the tumor board and was able to consult with Dr. Linda Liau. According to Dr. Wagle, Dr. Liau felt that a larger biopsy/resection would be safe and possible. However, I haven’t had a chance yet to meet with Dr. Liau and waiting to hear from her office to schedule an appointment. I hope we can schedule one for this coming week or early next week. I also still am waiting for my MRI and PET scan appointments as well.

Although I haven’t had a chance to speak with Dr. Liau yet, it does seem very likely that I will have to undergo the open biopsy after all. However, I’m glad that Dr. Liau will be the neurosurgeon overseeing my well-being.

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.