Is it my shunt, or something else..?

I’m waiting to see Dr T, just for my own peace of mind.

Having experienced ETV and shunt failure (a few times), it amazes me that I still go through the same motions. However, the thought process hasn’t changed. Also, there have been differences each time with a few commonalities.

What brought me to this point

This past weekend I attended the Hydrocephalus conference hosted by the Hydrocephalus Support Association, in Melbourne, Australia.

I had a nagging headache over the 2 days, which started on Saturday and escalated. No vomiting, I never do, but nausea. My mood was low though I tried not to let it affect me, which was challenging in a social setting. And, while my appetite was affected, I ate what I could just to ensure I had energy. 

I even went for a swim and a dip in the spa on the first day to try and destress.

However, that nagging feeling of “Is this my shunt?”, constantly reared its sinister head. I reflected back on notes on my phone from past times, especially July this year, when my valve needed replacing. I used it as a checklist. I had the same symptoms minus hearing the shunt valve draining, which I have not heard since this new one was implanted.

Do you know what’s crazy about this uncertainty? 

While you feel like crap, you convince yourself you’re imagining it. And, there’s probably nothing wrong.

My level of anxiety feels elevated as I keep doing an internal check. Swaying between “maybe it’s nothing” to “I need to be sure”.

While my headache has subsided, it feels like it’s lurking in the shadows, ready to pounce at any given time. I feel lethargic, nauseous and just unwell. Also, I’ve been running my fingers over my shunt tract to check if it still hurts. It does.

I spoke with the neurosurgical nurse who came to give a talk, and asked if it’s normal to have pain around the valve, since my surgery was just over 3 months ago. She said; “No. Best to get it checked”. 

When I run my fingers over the valve, I get a mental picture of my shunt being disconnected. Probably my mind playing tricks on me. Regardless, I’ll ask Dr T if we can check to make sure.

Working my way backwards from possible shunt issues to something else feels better than the alternative.

Best case scenario: Nothing’s wrong with my shunt and it’s something else.

I suppose what scared me most, as well, was the “moment of mental confusion” I had. Thankfully unbeknownst to those around me, but painfully obvious to me. Something I’d rather not go into detail about right now.