Dear family and friends,
I have started this blog so that I can reach out to you and keep you posted on the recent neurological challenge that I am facing. As I undergo tests for diagnosis and will soon commence treatment it will be difficult to talk to each and everyone and provide updates. Nevertheless, my family and I seek your blessings to help us sail through the difficult times that lie ahead. This blog will serve as a common platform for us to stay in touch and support each other. Please keep checking as we will regularly provide updates.
So here is how it all began...
I returned to the United States from India on 19th Nov 2015.
While in India, I had started experiencing slight dizziness and impairment of peripheral vision. I thought these were probably due to changes in my eyesight and thus got it checked and changed my glasses. However, my symptoms persisted.
On 25th Nov 2015, I met my primary care physician (PCP) in the US. He referred me to an ophthalmologist and ENT specialist. He suggested that if visits to these doctors do not help then I should get an MRI (without contrast) of my brain.
On 30th Nov 2015, I met the ophthalmologist who detected that there was a problem with my peripheral vision and also suggested that I get the MRI.
On 01st Dec 2015, I met the ENT specialist who did not detect any problem with my ears and also recommended the MRI.
I got the MRI approved from my PCP and got it done on 10th Dec 2015 at JFK Medical Center (JFK) in Edison, NJ. The results of the MRI showed a lesion measuring 2.4 x 1.7 x 1.5 cm in the brain stem, in the pons area to be precise.
On 14th Dec 2015, my PCP performed a blood test, the results of which were normal. He referred me to Dr. Stephen Bloomfield, a neurosurgeon at JFK neuroscience institute (JFK).
On 16th Dec 2015, we met Dr. Bloomfield for the first time. Upon looking at my MRI reports, he suggested that I get another MRI, this time with contrast, a chest X-ray and a CT scan of the abdomen and pelvic region.
On 20th Dec 2015, the X-ray and CT scans were performed, both of which were unremarkable.
On 22nd Dec 2015, MRI with contrast was performed.
On 23rd Dec 2015, I met Dr. Ming He, a neuro-ophthalmologist at JFK who reviewed the results of my MRI with contrast and confirmed that my vision problems were due to the lesion seen on the scans.
On 29th Dec 2015, I met Dr. Bloomfield again and he reviewed my 2nd MRI scans with me. He suggested that a stereotactic needle biopsy would be the best option to diagnose the lesion. I was also asked to stop driving and I have not driven since then. I asked him to suggest another doctor whom I can approach for a second opinion. He recommended that I can meet Dr. Michael Sisti, a neurosurgeon at Columbia Presbyterian Hospital in New York City (NYC). This hospital is one of the top 5 neuroscience institutes in the United States.
Prior to the onset of my illness, we had planned a family vacation to Puerto Rico from 30th Dec 2015 to 4th Jan 2016. After much thought and discussion with the doctor, we decided to go ahead with our plans and take the time off. As it is, doctors were also on vacation during that time.
On 7th Jan 2016, we met Dr. Michael Sisti at Columbia. He introduced us to Dr. Guy McKhann also a neurosurgeon who specializes in needle biopsies. Dr. McKhann suggested that before the biopsy, I undergo a spinal tap (test of the cerebrospinal fluid (CSF)). Testing the CSF, he said, may diagnose and could possibly help avoid a biopsy.
On 8th Jan 2016, I met Dr. Fabio Iwamoto, a neuro-oncologist at Columbia, who performed my spinal tap. He suggested I also undergo a PET scan.
On 14th Jan 2016, my PET scan was performed. I met Dr. Iwamoto that evening and discussed the results of the spinal tap and PET scan. The spinal tap was normal, thus indicating absence of infection, inflammation or demyelination. The PET scan indicated a tumor. Therefore, it was decided that a biopsy cannot be avoided and will have to be performed as soon as possible.
On 15th Jan 2016, I met Dr. McKhann and underwent pre-biopsy procedures and tests. My biopsy is now scheduled for 19th Jan 2016 at 09:00 AM EST at Columbia.
- Hasit
