Tag Archives: Neuro-ophthalmology

Update, The Final Stretch

27 Mar

To begin, I want to say that I really appreciate everyone’s patience with my lack of posts. It’s been an extremely busy last couple of months.The last time I found the time to post was Winter Break back in December and now it’s Spring Break, which I hope speaks to how busy I’ve been.

Right now I’m away with my Grandmother, and we’re having an amazing time. Even when I’m not away and just in school I’m constantly reminded of how lucky and blessed I am. I’m blessed to have treatment that’s going very well, I’m blessed to have an amazing family, support network and education and I’m also blessed to have people following my story.

In the past couple of months my treatment has been mostly uneventful. I’ve now completed thirty-three of my forty-one treatments, which means I only have eight treatments left. I’d like to think that I’m now in the final stretch! Most of my treatments have gone very smoothly. Normally, I have my infusion of Vincristine and Carboplatin on Thursday afternoons. I normally feel pretty sick afterwards but then I’m able to bounce back and feel okay by the end of the weekend. Lucky I’m still able to go to my classes on Fridays.

One of the few “eventful” moments happened back in mid-January. I had returned from vacation with my family and was back in DC. I was in the middle of exams and studying like crazy. One morning I woke up and within an hour or so had a very strong migraine. I had just recently had an MRI and the migraine couldn’t help but make my mom and I suspicious that the pressure in my head had finally become an issue. We called the hospital and they look at the MRI. The MRI didn’t show increased swelling. Instead, they assumed that the rigorous study and particularly time spent in front of screens is what caused the migraine. My doctors then stressed the importance of letting one’s eyes rest to prevent eye strain, which is what I was going through.

The only other “eventful” moment was during my most recent set (meaning a group of four weekly infusions) when during my first infusion I “bounced back” much less effectively than expected. Normally during my first infusion after a two week break I react normally if not somewhat better than after other infusions. This was a little concerning. However, after talking with my doctors it just seemed to be a strange outlier. The following week I reacted totally normally.

In the next few weeks I have my next MRI and then I’ll be meeting with my entire team which includes the neurologist and the neuro-ophthalmologist. This means an entire day spent at the hospital. We’re hoping for good results. I’ll hopefully find time to post and fill you all in on the results.

Again, I want to thank everyone who’s following my journey. Your support and well as your patience has been incredible.

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Visit with the Neuro-Ophthalmologist

20 Aug

Yesterday was my appointment with the neuro-ophthalmologist. My oncologist has been insisting that I see the neuro-ophthalmology team to follow up on the improvement in my vision since my surgery and diagnosis. Since I had my surgery back in April my double-vision has totally disappeared.  However, because it’s obviously not healthy to have double-vision my oncologist wanted to see how healthy my eyes are now.

When I arrived at the ophthalmology suite I checked in and then had to wait around forty minutes before going back to meet with the doctor. The appointment began by meeting with one of the ophthalmology fellows who had me recap my diagnosis and previous medical treatment. She did a very thorough recap of everything that was going on and put the recap in my medical records. She quickly looked in my eyes and did some simple tests before the head neuro-ophthalmologist came in. When the neuro-ophthalmologist came in he decided that because I hadn’t previously see the neuro-ophthalmology team he wanted to do a full exam. This meant that I would have to do a visual field test and then receive dilating drops so that the team could look into the back of my eyes.

I had previously done a visual field test when I was an inpatient in the ICU. My last visual field test was done when I was just hours out of neurosurgery and still experiencing very apparent double-vision. During  a visual field test a technician covers one eye and then places your head in a machine. In the machine there is one light where you focus your uncovered eye. As you focus on the light other little white dots appear throughout the machine and you click a button every time you see a dot. The test both eyes. Believe it or not this test is really hard!

After the test the technician put the dilating drops in my eyes and then sent me back to the waiting room. I went and got a snack and before I knew it I was called back to meet with the doctor. My doctor, dad, and I went over the results and looked into the back of my eyes. The doctor was shocked! Apparently when you’re diagnosed with a tumor like mine (because of it’s location) and experience double-vision you expect to see some vision loss. The doctor couldn’t find anything wrong with my eyes! When they looked into the back of my eyes they saw the equivalent of scaring around my retinal nerves, which is normal when you’ve had double-vision, but this has no effect on vision.

The team of doctors was actually really surprised. They were looking for something wrong; either vision loss or loss in depth of field. However, they couldn’t find anything wrong! This was awesome news!

The appointment took roughly two hours. It took a few hours before the dilating drops wore off. Now I’m just getting ready for chemotherapy on Thursday. One more round before a two week break!

Thank you for following my journey.

-Josh