How did I get here?!

I'm scheduled to have a brain biopsy on December 3rd. Although this decision was made only recently, the process to get here has been a long one. Here are the milestones:

January 21, 2008: I first noticed that I had some vision loss when reading. When you're reading, even though you're focused on one word, you can already see some of the words coming up. Early into school, I noticed that I couldn't see as many of the words coming up. I thought it was nothing major. At first, I thought it was just stress. When it didn't go away in a week or so, I called my eye doctor.

February 4, 2008: My visual field test revealed that I was missing a small portion (about 1-2%) of my right visual field. This deficit was in both eyes. So, if I closed my left eye, I missed a portion of what was on the right. If I closed my right eye, I also missed a portion of what was on the right. The ophthalmologist said that this type of vision loss could be due to a stroke, a tumor, or multiple sclerosis (MS). I went immediately from there to my doctor's office, told them what the ophthalmologist said, and they scheduled an MRI.

February 6, 2008: My first MRI. My mom was such a great advocate for me! There was some mix-up with the hospital and they didn't have me down for the MRI. So, they told me to come back three days later. My mom told everyone she could find that I absolutely needed to have this test and, finally, we got to the wonderful technician, Mark, who offered to stay late and run my MRI. He has since done two or three other tests for me and he's always understanding.

February 7, 2008: The emergency room doctor called at midnight on the 6th to tell me that they had found a lesion in the left hemisphere of my brain. The lesion did not look like a stroke or a tumor but was more consistent with MS. He said that I needed to start very high doses of steroids immediately in an attempt to decrease the swelling in my brain. I went to the pharmacy as quickly as I could and started my medication on the 7th. A typical dose of prednisone is around 12-20 mg per day. I was on 500 mg of steroids per day for 5 days. It was the highest dose of steroids the head pharmacist had ever heard of.

When people go on steroids, they often get very jittery but, for me, I became extremely tired. My hands felt like concrete blocks. My face swelled, as is typical with these drugs, and I looked like a chipmunk. Lucky for me, no one noticed!

February 15, 2008: My first appointment with my neurologist. My professor, Annie, agreed to come with me because my mom couldn't. She was (and still is) an angel! When we saw the scans, I was amazed at how big the lesion was. It was bigger than I had ever imagined. About the size of a large orange or a grapefruit. It was also right in my language area - a place called Wernicke's area where auditory information is processed.

My neurologist agreed with the radiologist who felt like my lesion was most consistent with MS. However, the diagnosis could not be made definitively because there were not multiple lesions (multiple sclerosis). We decided to wait for additional information about the lesion after I got another MRI a few weeks later.

March 16, 2008: A second MRI. This MRI revealed that the lesion had gotten smaller, which was great!

Despite the scans, it was still unclear if this was definitively MS or not. Occasionally, people get these types of lesions for some unknown reason and they go away, never to return. Our options were to 'wait and see' or do a spinal tap (aka, lumbar puncture) to look for cells that indicate the presence of MS. After all the research I had done to understand what a diagnosis of MS could mean, I knew that early treatment was best. So, I opted to have a spinal tap in order to know for sure.

April 8, 2008: My first spinal tap. The process for a spinal tap is relatively simple: the doctor inserts a small needle into the space between the lumbar vertebrae in your lower back. This placement is chosen to avoid your actual spinal column; if you put a needle in your spinal column, you would be paralyzed. Once the needle is inserted, 3 or 4 vials' worth of cerebral spinal fluid are withdrawn. Then, the needle is removed.

The major problem after a spinal tap is the headaches. Spinal fluid helps support your brain so, without it, you can get incredible headaches that last for days. Women who get epidurals during childbirth can also get these headaches if their spinal fluid leaks out of the hole from which they've received the anesthesia.

I've read that only about 30% of people get these headaches from spinal taps. I am part of that lucky 30%, unfortunately. The headaches didn't hit me until about 2 days after the procedure but then I could do nothing but lay still and drink gallons of water. Fortunately for me, Jeff was in town to take care of me.

April 14, 2008: The results from the spinal tap were negative for MS! We thanked my neurologist kindly and assumed that this had just been a fluke.

September 1, 2008: I walked into our speech and language clinic at school and looked at my friend at the reception desk, only to find that I could not see half of her face. I was completely startled. I found several other people to look at so that I could confirm what I saw. I called the doctor immediately and was able to be seen by an ophthalmologist that afternoon.

I was so shocked that I didn't know what to think. The reason I hadn't noticed the deficit in the morning was because I wasn't specifically looking at something symmetrical. When you look at a variety of things, your brain fills in what information isn't available. It was only when I focused on a specific spot within a specific object that I noticed how much I couldn't see. In fact, I had not trouble driving in to school, despite missing half of my right visual field.

September 2, 2008: I started on high doses of prednisone again. This time, I was much more upset. This was no longer just a fluke. I felt like I would surely be diagnosed with MS this time. The shock of it all and the disappointment of having to face this diagnosis once again was much more significant than after the first lesion appeared. Not to mention the fact that it was much more difficult to proceed with my daily life. Reading was so much harder, I often felt dizzy because my brain was trying to fill in so much missing information, and I hated seeing only people with half-faces around me.

September 9, 2008: Third MRI. This scan revealed that my lesion was smaller than in January but bigger than in March. Oddly, the lesion was in the same place as last time, which is very unusual for MS. My neurologist requested that I got blood work to rule out optic myelitis, which is a MS-like disease that results in complete vision loss in addition to other symptoms like gait disturbance. In addition, I got a CT scan to look for any tumors.

October 16, 2008: My optic myelitis test came back negative. We were so relieved! The test took so long because it was sent to the Mayo Clinic for evaluation. Optic myelitis is a very rare disease and the test for it is only administered in a few places. With the negative optic myelitis test and a negative CT scan, our next step was to see an MS specialist at CU-Denver.

October 28, 2008: I met with an MS specialist at CU-Denver. He indicated that we had three possible diagnoses at this point: a demyelinating disease like MS, lymphoma (a type of cancer), and infection. He recommended a full-body CT scan to look for cancer cells, another spinal tap (because a negative spinal tap doesn't necessarily mean you don't have MS), and, potentially, plasma exchange.

Plasma exchange is a process of removing plasma from your body and replacing it with purified plasma or with bioengineered plasma. Basically, they take a large catheter (about the size of your pinkie finger) and insert it into an artery, either the femoral artery in your leg or the carotid in your neck. For about 3.5 hours, they take out small quantities of blood, purify it, and replace it. The specialist suggested doing this for 10 days, every other day. He said that I would feel like a, "dirty, wet rag" afterwards. Lovely. The goal of the plasma exchange was this: some demyelinating diseases respond very well and very quickly to plasma exchange. So, if we did the exchange and I did well, it would help us determine what the root cause of my lesion was.


October 31, 2008: My second spinal tap. For this one, I was slightly less nervous than before - I knew what was coming - and the procedure went very well. However, like the first time, I was fine for a few days and then had significant headaches that didn't fully alleviate until about a week later.

Week of November 10, 2008: We talked with my neurologist, who talked with the specialist I had seen as well as with several of her partners, and she said that the two options left were to 'wait and see' or do a brain biopsy. The spinal tap had revealed the cells that are typically associated with MS but they can actually occur with cancer as well. So, there were no other options for determining the cause of my vision loss.

Jeff came into town so that we could talk with the neurosurgeon. The neurosurgeon agreedthat our only options were to do a brain biopsy or 'wait and see.' He also reassured us that, although there are very significant risks associated with a brain biopsy, they are fairly rare. We could try waiting until I had new symptoms but I wasn't in support of that. I had heard about a patient whose brain scans looked similar to mine and she got help only when she was already in a wheel chair and significantly impacted by the disease. I definitely didn't want that to be me.

We scheduled the biopsy for December 3rd - the day after my 27th birthday. That would allow me to attend ASHA - the main conference for speech-language pathologists - and spend Thanksgiving with Jeff's family in Oregon.

Upcoming Dates:

November 18, 2008: A physical to make sure I am healthy enough to receive general anesthesia.

December 1, 2008: Another MRI that will map my brain so that the surgeons can determine exactly where to insert the needle.

December 2, 2008: My birthday!!! I can eat whatever I want until midnight!

December 3, 2008: At 5:30am, I will need to be at the hospital to check in for surgery. They will shave a part of my head but, hopefully, I will be able to cover it with my hair. The surgery itself will start at 7:30am and will last about 90 minutes. Although some brain surgeries are performed with the patient awake, I will be fully sedated, for which I am VERY grateful! I will be put into a 'halo,' which is a type of clamp that attaches to your skull to keep your head very, very still. Then, they will use the MRI data from December 1st to link to an LED projector. The needle will be linked to the LED projector so that it can be positioned in the correct spot. They will then cut my scalp open and drill into my skull, creating a burr hole. The needle, which is about the size of a piece of spaghetti, will be inserted and small pieces of brain matter (about the size of rice) will be extracted. It is likely that there will be some bleeding in the brain and there is an increased risk of seizures but those are fairly uncommon. It is likely that I will lose some of my peripheral vision and have some speech/language issues but theses symptoms should alleviate after the first week or so. I will stay overnight in the hospital and then they will do a CT scan to make sure there is no hemorrhage. After that, I will be able to go home. It will take about a week for me to feel ok and it will take about 3 weeks to be back to normal. All in all, not bad for brain surgery!