Shunt patency study is on the cards

A week-long headache turned into dizziness and lightheadedness that felt very much like vertigo, with little to no appetite. Feeling like the world is spinning when you’re literally standing still, sitting and/or even laying down, is annoying and unnerving. A feeling akin to being on a rollercoaster, or out at sea, leaving you feeling nauseous and unwell. Trusting my gut instinct instead and opting not to go to the hospital emergency department. Rather, I decided to contact my neurosurgeon on Thursday and, after telling him what I’ve been feeling, he told me to come and see him the following day. We discussed my symptoms, and he sent me for a CT and X-ray and told me to come right back after having it done at the hospital, next to the building where his rooms are.

The CT was normal showing no signs of increased ventricles nor did it show any signs of over drainage i.e. slit ventricles. The X-ray provided peace of mind that the entire shunt system was still intact. While he offered to do a lumbar puncture, I enquired about a shunt study instead. He agreed this would be another useful diagnostic test. We discussed it in more detail, and he told me I would need to be admitted and have it done as an in-patient.

So, on Monday morning, I will be having a shunt patency study done where a small amount of nuclear medicine is injected into the shunt reservoir and then traced to see if the shunt is working as it should.

*If anyone has had this done before, feel free to let me know about your experience.

I continued to explain to him that the most concerning issue for me, other than the symptoms above, is the fact that I can no longer hear my shunt draining. I told Dr T that when I woke up after having my Sophysa shunt inserted in 2022, I could hear it draining and proceeded to mimic the sound I hear. He said that would lead him to think it might be the valve but we don’t know until we do the study. And, while it was weird at the time, it has become a source of comfort to me daily. So, naturally, now that I can’t hear it, I’m concerned.

*Hearing my shunt drain is something I hadn’t experienced before, especially not with the first programmable Medtronic valve I had placed.

Knowing that shunts can also become blocked at either end, I asked him whether this is something you could see on imaging; his response “No. Unfortunately, it requires exploratory surgery. And, if a blockage is found, it will either be a partial or full replacement.” He then took out a sample of the same type of shunt I have and showed me the different parts that could be problematic. He then explained the process of elimination he would follow to ascertain where the problem is. Most of which I cannot remember right now.

I’m hopeful that we will get to the bottom of what’s going on. Best case scenario, the shunt is working fine, and no intervention is needed now. We wait and see. The alternative, a shunt revision or replacement will be done. But, before I get ahead of myself, let’s cross that bridge when we get there!

With hindsight and (past) experience as my guide, I decided to make the most of my time before it all starts. So, I took my dogs for a walk near the water this morning, to take in the view and smell of the ocean. I took my daughter to her hockey game this afternoon because it’s important to me to “show up”, regardless of how crap I feel. I also arranged to treat my eldest son to a pre-birthday breakfast with the family in the morning, before I need to check-in to the hospital at 2pm, just in case I end up having surgery and miss his actual birthday on Tuesday. The things we do for those we love…

While this seems to be my “norm” as far as my family goes, who seem less concerned or stressed about any of it, it doesn’t mean I’m less anxious. I sometimes wonder if they truly understand. In fact, I know they don’t. The reality is, as much as I blog about this condition, they are the one demographic who are as uninformed as the rest of society who walk around blissfully unaware. And, I might add, it’s not for lack of trying on my part…Meh!

The timing of all this could not be worse; having just started my new job on the 1st of July, as mentioned in my previous post. But, as anyone with hydrocephalus will tell you, there’s just no telling when, or if, your treatment option will fail. It literally is outside of our control. One would think that the more you go through this hydro drama, you’d get used to it by now. It’s not lost on me how totally isolating this part of the journey truly is. Though I try to calm myself down and take a mind-over-matter approach, the tension in my shoulders has increased to a level of discomfort.

Truthfully, the only thing that keeps me going right now is my faith, and a very close cousin who encourages me daily in all things life to never give up!

*Thankfully, at the time of writing this post, my headache has subsided, which is great. But, it has left me feeling like the boy who cried wolf as the lightheadedness continues!