Another update… and so soon. I know, I know, I’m spoiling you.

I wanted to get this in before the Internet breaks from all the wanna-be political experts.

So like said in the last post, I decided to go to a private hospital and see a highly recommended ophthalmologist, which only took 3 days instead of the current 5 weeks I’ve been waiting for a so called urgent appointment. Sometimes when a door is clearly not budging, you need to look for another one, so I did. 

It was… a surprising appointment.

Side Bar: I feel like I need to emphasise the purpose of this part of the blog, specifically the part where I write my updates about the current journey I’m on. My blog is and will always be real and honest, especially when it comes to my experiences etc. I want to paint a picture with the facts I’ve been given and give an accurate account of my story – the good and the bad. In no way does this take away from the faith I have in Jesus. I know how this is going to end, without a doubt. Great comebacks never came from perfect stories.

But I also know there are 2 groups of people who may fire at me for these updates, either they may criticise me for a lack of faith because I’m writing about the facts I’ve currently been given or people may think I’m being too optimistic and am in denial. Whatever your stance, please appreciate that from the start I’ve always written honestly with the caveat that I believe in miracles and my faith is ultimately in God. 

 

So here we go. Friday. The hospital appointment. After reading through pages of notes from the last 21 months and looking at the different physical structures of my eyes, the consultant gave me her professional opinion:

  •  The two anti-seizure medications were very likely not the main cause of the eye issues since the eyes themselves seemed to look physically fine as a whole, and the angle closures initially concerned about have become shallower since stopping the last drug but surprisingly with no real improvement to my vision.
  • This would make sense because my eyes have continued to get progressively worse even since coming off of ALL my medication.
  • It’s the FUNCTIONING of the eyes that are going all wrong. This is giving me almost constant dilated pupils that are either un-reactive or not equal, and also giving me the eyesight of a 70 year old. There are other things equated to the functionality of the eye or the communication from the eyes to the brain, like the swelling in the left eye, unusual redness and pain, double vision, seeing constant TV static or sparks of fire everywhere I look and halos around every light. All of this makes me so nauseous all day every day, and sometimes messes with my equilibrium.

The consultant went on to explain the possible causes, which is why I’m now being sent for an urgent Brain MRI to specifically rule out tumours/growths, bleeding in the brain or old bleeds that have happened since the operation as well as other things such as constant, severe neurological migraines (basically meaning my brain is going haywire all the time and therefore compromising some of its functionality).

There’s a very strong possibility damage was done during the operation in June, which has damaged the communication between the brain and my eyes.

 

For those of you who want to know specifics from what happened in June:

Some of you may already know this, but after the ICP I had in June, I woke up in recovery and was in there longer than usual because my left pupil was unequal and nonreactive. This was also during the time that I kept leaking from the drill hole. I remember a lot of blood / fluid dripping out of my head, which I now know was a release that happens in about 20% of those procedures where during process of testing for high or low pressure, the pressure actually gets released from going in there. (This is a great thing!) 

During the days in hospital where I had to lay in bed with the sensor in my head, my eye sight went really funny. I’m talking severe double vision, very limited peripheral vision and other strange visual disturbances. To give you an example: my mom had to stand or sit in one specific spot every day so that I could see her. 

Towards the last few days of my inpatient stay, the hospital was really on the ball and arranged for a bunch of eye tests to check the physical health of the eye. Everything looked okay, and it was assumed things would calm down as I healed. 

 

So here’s the current state of play: 

The medication is now not being blamed as the root cause of my sight problems, even though they may have aggravated things.

So the reason behind all this needs to be found quickly, hence why I’m being sent to another specialist and await an urgent brain scan. There’s no rule to say that a scan is going to pick up the damage, especially since I’d imagine it would be very delicate and deep. Obviously they need to rule out other big players and make sure there are no fresh bleeds or anything else that shouldn’t be in there since July. I’ve also been prescribed special eye drops that force my pupils to constrict. They aren’t as fun as they sound, unless you like dropping acid into both eyes.

The journey continues. I’ll hopefully know a little more of what I’m dealing with by December. But for now I’m learning to find joy in the little things and not let the weariness stop me from living. More importantly, I’m fighting every day to keep trusting God through all the ups and downs. I’ve learnt and am still learning so many life lessons through all of this, and in the end I know I’m going to be stronger for it.

“And we are happy because of the hope we have of sharing God’s glory. We also have joy with our troubles, because we know that these troubles produce patience. And patience produces character, and character produces hope. And this hope will never disappoint us, because God has poured out his love to fill our hearts.” Romans 5: 2b-5

Future Esther