“Is this going to be wash, rinse, repeat ad infinitum?”

To understand, you truly have to experience it for yourself

If you’ve been living with countless shunt revisions and replacements for a long time, I feel your pain. It must feel like a cruel punishment for a crime you didn’t commit. As a young adult without someone in your corner to help ease your pain at a time when you’re trying to get through college, it’s difficult to not feel hopeless, especially when the head and eye pain make it difficult for you to read. I suffered horribly for so long and I can’t help but feel the same sense of hopelessness now, especially after the surgeries have already been done and yet the pain has returned. I don’t think it really went away though. Did years of having areas increased signal intensity caused by inordinate pressure against the ventricle walls set the stage for something else to develop? Is it scar tissue from the brain damage that I suffered during the first surgery that is causing the problems now? After all the surgeon did say it was a mangled mess in there when he revised the last shunt. Why now?

It seems as though people need to personally experience the same thing before they develop the same sense of urgency, but I wouldn’t wish this on anyone. The best analogy that I can think of is wearing a crushing “helmet” of pain while having your eyes impaled every day all day. I wouldn’t wish this on my worst enemy.” – Sandy

The endless rhetorical questions you ask, when living with an incurable condition…

Celeste A. Marriday

How anyone with Hydrocephalus responds to a question like this, is entirely up to them. Most times, it’s a response driven by the experiences we’ve had personally – some are good, others not. Taking into account the struggle some of us have to endure, just to be heard or taken seriously, especially when test results are “normal”, is sometimes beyond ridiculous. (For lack of a better word).

This was my response:

Unfortunately, it has been my experience that there isn’t much you can do about it except keep pushing to be heard. It took 15 different doctors to finally find one who thought outside the box and 12 years later, having been symptomatic intermittently, before I got help. I wish I could answer your question “Is this going to to be wash, rinse, repeat ad infinitum?”, and say no. However, since there is no cure and we are all different, the likelihood is high of that being the case. Shunts and ETVs can and do fail, at any given moment. The length of time in-between surgeries means nothing in the grand scheme of things. (This is the crux of the matter).

Just being honest

I cannot in good conscience give a less direct response. I will, however, say; We are not all the same, our bodies are different despite having the same condition and, experience has taught me that, unless you are half dead, it’s the experience and approach of the surgeon that will determine the next step. The reason for this escapes my simple mind, as nothing makes sense in this instance. I would even go so far as to say, just because someone has a plaque on their office wall saying they’ve got the qualifications, does not necessarily mean you will get the care or attention your body needs. As harsh as the reality of Hydrocephalus is, so too is the care we receive or better yet, lack thereof.

I can relate

I had this same moment back in August after having had my 6th brain surgery in May. I felt overwhelmed and almost in a state of panic as I spiralled on a train of thought, looking toward my future. It dawned on me that there isn’t much I could do about any of it. I cannot control the outcome. There isn’t anyone, outside of myself, who could possibly ease the burden or reduce the stress of my situation. A feeling of helplessness swept over me, like a tsunami, but I managed to get back up from it. I realised, that’s all I can do. That’s all any of us can do.

My advice

As much as I can’t guarantee that this is “going to be wash, rinse, repeat ad infinitum“, I cannot (in good conscience) say that it isn’t. The truth of it is, we just don’t know. The best you can do is; know your body, get to know the signs and symptoms to be aware of, advocate for yourself and, when the time comes, make yourself heard to get the help and care you need. If you aren’t in a position to, either find someone who will do this on your behalf or trust enough to know that, in the moment, what must be, will be…

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