Hydrocephalus: Nothing about this condition is easy…

Hydrocephalus: Nothing about this condition is easy…

Anyone who has followed my blog and knows my journey, would have an understanding of where I’m at. But, in the interest of those who aren’t aware, I’ll try to explain.

After last week’s vision loss and subsequent headaches, I’ve had time to think (aka, silently freak out!). My initial thought was, if this is Hydrocephalus-related (ETV failure), I dreaded the thought pattern that would ensue.

I’ve been here so many times before…

Where I’m at with a Neurosurgeon:

I’ve consulted with 2 since moving here. The first one referred me to a Neurologist in the public system where I’m being treated for migraines and pain management. That hasn’t gone very far.

The second one instructed me to come to the hospital when my symptoms reappeared where he would then, most likely, admit me and do ICP monitoring. Symptoms, which I’ve since written down to possibly being caused by a bad reaction to the medication I’ve been taking. (I’m still not entirely sure about this). Since that’s not quite the case, and I’m not experiencing similar symptoms as before, I’m at a crossroad. Also, I’m not convinced an appointment to see the Neurosurgeon, would yield any results. (At least not this one).

An inaccessible Neurosurgeon makes for a challenging situation

The other option I have, is to make an appointment with the Neuro Ophthalmologist I saw last year to get my eyes checked. If anything is happening, he should be able to do a comparison. But…What if he sees no change? What if I end up like all the other time’s before, where I have these episodes of vision loss, and yet nothing comes from further investigations?

More importantly…What if I don’t do anything and I lose my eyesight…or worse?

The irony of that question is:

The fact of knowing the financial burden it’s going to add to an already stressed out situation. The tension and possible arguments that will ensue and the further strain it will put on my marriage. BUT, if I don’t do anything and choose to ignore the pain and vision loss, my family will literally be without their main breadwinner. A burden which weighs heavily on me. To me, that will probably be even worse. (I know, sounds ridiculously dumb, right?).

The old: You can’t take care of anyone else if you don’t take care of yourself first does not escape me. If only they knew…

I decided to research a little further as my Cervical spinal stenosis pain has flared up as well (to add insult to injury!). From what I’ve read, there may well be a correlation where;

In the upper cervical spine (C0-C2), this can cause symptoms such as nerve and tendon irritation and vertebrobasilar insufficiency with associated vertigo, tinnitus, dizziness, facial pain, arm pain, migraine headaches, and vision problems.” All symptoms I’ve struggled with before. My issues exist slightly lower down, between C3 to C6 but, still worth considering as a factor, in my opinion.

If this is the cause, then it ultimately means I need to see a Neurosurgeon as my GP informed me, this is their domain. So, do I go back to the 2nd Neurosurgeon or do I find a new one? The answer would be, “No”. I arrive at it simply because he dismissed my initial diagnosis and referral, as not being severe enough. AU$300 Telehealth consult, which lasted all of 5 minutes, for him to tell me to go back to my GP who needs to work harder at figuring out what’s causing my symptoms. I’ve also learnt the hard way that, continuously beating your head against a rock that won’t budge, only inflicts more pain.

Given the time of year, it’s a bit tricky. I have however, started looking for a different surgeon…just in case. Also, in order to help myself, I’ve booked in a few Physiotherapy sessions for this week and the next.

We have to own our care, as hard as it can be at times, simply because we are not qualified medical doctors. We don’t have all the answers but, ultimately, we have the upper hand by being the ones living with the symptoms of this condition and others. You are the only one who can physically feel what’s happening inside your own body. Apply a bit of common sense and you might just find yourself in a position to make an informed decision about what is required and where to look. At the very least, you can help narrow down the search and be your doctors ally (the ones who don’t mind this kind of relationship).

* https://www.caringmedical.com/prolotherapy-news/connection-vision-problems-chronic-neck-pain/

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