January 2024

After my last Dr visit, I was asked to schedule a scan in December and follow up with Dr. Wani unless one of three things happened: 1) unexpectedly start losing weight 2) get Jaundice or 3) feel pain in the area of the pancreas.  In late November, I made an appointment for a scan on Wednesday December 20th although I didnt make that appointment.  On Sunday December 3rd, I felt the ping in my abdomen and mentioned it to Jen who suggested I go to the ER.  I mentioned i'd like to see if it was a one off or if it was going to continue and agreed, if it was still an issue on Monday, I'd go to the ER.  I ended up going to UC Health's ER on Monday at 3pm....

After 7+ hours at the ER, having done scans and bloodwork, they said it could be chronic pancreatitis as they didnt see anything problematic and even mentioned the size of the lesion was smaller than on prior scans. The ER Dr's asked that I follow up with Dr Wani and to take Tylenol for the pain. 

I sent notice to Wani's office through the Epic portal and, when I heard back, they asked me to schedule an MRI with MRCP (pancreas focused) asap but, with the end of year holidays and a packed schedule (for insurance reasons), I wasnt able to get the appointment until Saturday January 6th.

This MRI is a long one and they put this "board" on your chest to focus on the pancreas. In the moment, when they ask you to hold your breath, you can feel the heat of the scan....

I was scheduled to see Wani on Wednesday the 10th and when I woke up that Monday, I had a small headache and felt like my vision was blurry.  The headache continued and during my Wednesday appoint, I mentioned it to the nurse who took my vitals before seeing the Dr. When Wani came in, he asked about the ER visit and how i'm feeling then mentioned they've seen growth of a "stone" in my pancreas.  Apparently they've seen it before and it may have been noted in the scan results as he said it's getting bigger and will block the pancreatic duct if not addressed. A blockage creates Jaundice and the initial action is to schedule an ERCP and put in a stent.  After that, they'll need to break up the stone and that could take 3-4 more ERCP procedures. Although these aren't long procedures (under 60 minutes)  going under that much is troubling and I asked if there were non-evasive ways to break up the stone.  Wani said there are some laser procedures and we'd discuss later.

Near the end of the appointment, I told Wani about the vision/headaches and he said I should see my Primary Dr asap. As I was sitting in the UC Health building, I asked if there was anyone there I could see and they again said to connect with my PCP.  I took the first appointment available with my PCP, on Monday the 15th.

When I woke up on Friday the 12th,  my vision had changed again and I was seeing double. This is the first time i've experienced it and it's a different view in each eye....  not coming together into one picture. I kind of dealt with it for a few hours before making the decision to go back to the ER.

Jen drove us back to UC and we checked into the ER on Friday at 10:30am. When we left, Saturday at 5:45pm, they'd done 3 CT scans, 3 MRI's (brain and eyes) and 2 horrible spinal taps (now known as lumbar punctures) along with multiple eye tests and blood draws. While they couldnt say what happened, they were able to rule out more serious issues like a stroke or aneurysm. They sent us home and said I'd hear from Neurology and ophthalmology for follow up within a day or two.

On Tuesday, we went back to UC but this time to the Eye center to meet with Dr. Pelak, a neuro-ophthalmologist who said it looks like I had microvascular Palsy, which is similar to a stoke in the nerve supporting my left eye.  She explained it's similar to a "frayed" nerve which is usually associated with patients who have high blood pressure, high cholesterol or Diabetes.  She also mentioned the possibility of an autoimmune issue which sounded more likely and possibly connected with the pancreas as I dont have the other health issues. The best news, which I asked her if I heard it correctly, was the nerve usually regenerates or fixes itself in 12-14 week. 

It was a LONG appointment as they checked my eyes multiple times using prisms, lights and fingers I had to follow.  It's clear my left eye is not tracking as I could see all of them (there were 5 people in the room) watching it as they moved their fingers back and forth, up and down. Pelak said there is a great UC Dr who can get me a prescription for glasses, with Prisms, that should help until the nerve gets better although it wont be like my regular vision.

I met with the Optometrist on Thursday and it was hard to dial in good vision. In my left eye, the script has a significant vertical and horizontal prism to try and center my vision with the same focal point as my right eye. Dr said I cant "gaze" by moving my eyes left or right and need to rotate my head to a focal point.

She suggested an eye glass shop and a specific person who is good with prism, we went last weekend and picked up the glasses on Wednesday.  They're really rough unless I hit that exact point and I keep trying them although it's been better to have the eye patch and just use my right eye.  The problem is how tired that eye gets and usually, in the late afternoon, it starts tearing up. With either eye covered, I can see pretty well and surprisingly, the left eye has better vision. If I cover my right eye, it causes some balance issues so most of the time, i'm covering the left eye.

The glasses are for distance and dont help with the computer. I'm wearing my prescription computer glasses (with eye patch) when using the computer and readers (with eye patch) when reading or on the phone, etc.   I could write so much more on how they eyes feel or how much energy it takes to pull the left eye in to try and center my vision. I'm not playing hockey or driving right now and optimistic this will get better some things will bet back to normal.

And.... in the middle of all of this, I'm scheduled for the 1st ERCP on February 22nd.

More to follow....