The bittersweet journey continues…

The bittersweet journey continues…

For once, I have good news to share! Since my last past on losing my vision, my Neuro Ophthalmologist appointment was fast-tracked from 1 June to yesterday. Long story short, there are NO concerns about my vision!

Thank God for small mercies…(Though losing your eyesight would definitely not be classed as “small!)”

Not all things are this simple though as my road, once again, leads back to square 1. The suspicion is that it might be migraine-related, however, “An appointment with a Neurosurgeon would be best to determine if there is any link to your Hydrocephalus“, he said. When asked if my spinal stenosis might be causing any issues with regards to my vision, as this has been causing me the most immense pain too, he said he doubted it. “If you said aqueductal stenosis“, he might be having a different view. I explained that this is the cause of my Hydrocephalus as we continued on with the conversation. Hmmm…

As relieved as I am about the results, I feel conflicted. It’s never a straightforward answer. And, in fairness, I suppose that would be expecting too much, given the nature of this condition. I had an MRI last Monday of brain and cervical spine, even that didn’t go without any drama. As suspected, the comparison I had asked for wasn’t done. I called back and after a bit of losing my temper and being driven to tears, they agreed to do it for me – results pending! If I said my mental state was in tact 100% yesterday, I’d be lying. So, full disclosure.

It left me wondering for the rest of the day, thinking of all possible next steps:

  • I’d have to make an appointment with the Neurosurgeon but, would it be focused on my spinal stenosis pain or would it be focused on the vision loss and possibility of it being ETV/Hydrocephalus-related? Why should I have to choose between the two anyway?
  • Should I possibly try something else first and take the medication to treat migraines I was given a few months ago, in my bedside drawer, which I decided against due to the side effects.
  • It didn’t help that a stupid argument between my husband and I, on our way home from the appointment, left me feeling all sorts of low. (Note to self: He is not allowed to go to any of my appointments going forward.)
  • Maybe I should see a Chiropractor…

The weight of everything culminated to a boiling point at 1am when I woke up in pain all over, read the side effects again of the medication and saw the word “suicide” listed.

Maybe if I didn’t fight against it so hard, it might just get the job done.

However, today is a better day and I continue to soldier on. I don’t always make the best decisions but in this instance, I’m sticking to my decision to not take the medication. The thought of my children navigating this life without me, is too much to bear. To live with the episodes of vision loss, as and when they occur. And, instead, I’ll try to secure an appointment with the Neurosurgeon, laying all cards on the table. He’ll have the referral from my eye appointment, the results from my MRIs and my lovely face to deal with. I also have a backup plan (I highly recommend this and would even go as far as to say, have a backup of a backup!). If the consult with him doesn’t go as expected, I’ve already looked into a replacement for him!



    January 21, 2021 at 3:31 am Reply

    That is some good news there Skye. I have often said, if I have to lose any one of the five senses, the one I would be devastated to lose was my sight!

    • Skyewaters

      January 21, 2021 at 8:20 pm Reply

      It certainly is😊💙

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