I was fortunate to be referred to a large tertiary center, which was Mayo Clinic in Rochester MN. My first appointments were scheduled with the neurology department. During this appointment, the neurologist who specializes in idiopathic intracranial hypertension was not convinced my eye issues were related to the results on the lumbar puncture and MRI; however, to ensure this he ordered a repeat lumbar puncture and a MRV (magnetic resonance venography, which is the same techniques as a MRI but the dye allows them to see the veins of the brain better). During this fist visit with neurology, he highly recommended seeing neuro-ophthalmology and he saw that the request from my Vegas physician was denied with no rationale so he re-requested for that department to see me. Furthermore, he tested my neurologic responses and I had no neurologic defects.
The next day, I had my MRV which was a similar experience to my previous two MRIs. And the following the day, I had the lumbar puncture preformed. This time during the lumbar puncture, they had me lie on my side in the fetal position while they took the fluid from my spine. Additionally, I was to continue to lie down for 20 - 30 minutes after completing to ensure that the spinal fluid redistributed. With these changes, I had no headache!
Meanwhile, through a handful of connections (old colleagues but mostly my brother-in-law who works for Mayo Clinic), I was finally able to get an appointment at the end of the week with neuro-ophthalmology department. Initially, it sounded like I would have to fly back a few weeks to months later to be seen.
After the MRV and lumbar puncture were completed, I saw the neurologist for my second appointment with him. My opening pressure during the lumbar puncture was at the upper limit of normal, but not elevated and there were no abnormalities on the cell counts. Interestingly, my MRV showed extensive signs of intracranial hypertension with nearly attenuated transverse venous sinus (nearly collapsed blood vessels on the back of my brain). So again, the results were incongruent.
Furthermore, my neurologist who is specialized in intracranial hypertension had no idea what this meant other than at the time, I did not have intracranial hypertension. He stated he thought about my case for an entire evening (and likely through the weekend), because it didn't fully make sense. He stated that I may be at risk for developing intracranial hypertension at sometime in my lifetime or perhaps I just had more spinal fluid volume causing the changes on MRI and MRV. Also, he was adamant that if they ever wanted to do neurosurgery for this, that I come back to see him at that time. To that end, I do need to get my eyes checked for a swollen optic nerves (papilledema) every 6 months to monitor for intracranial hypertension for the rest of my life since I have those changes on imaging.
Ultimately, my neurology appointments were helpful as they ruled out a condition that was questionable and I didn't need neurosurgery!!! On the other hand, it was disappointing to not know what was causing my vision loss.
Next up, I will describe my neuro-ophthalmology appointments at Mayo Clinic.