I’ve written quite a few posts about having Hydrocephalus signs and symptoms outside the norm. It really gets to me that if a patient doesn’t fit the statistical norm, then doctors simply switch off. Admittedly, saying this, I know is a generalized statement (it applies to other health issues and things in life too) and simply because there are others who will go above and beyond. Them, I commend. Absolute legends at best. Something I can say with conviction having experienced care from at least one of them in the last 10 years.
It’s like any other profession where you have the people who give their all, the ones who give only what’s expected of them and just the downright idiotic/ignorant and lazy. Except, in this case, it’s a bit more serious when it comes to people’s health and possible survival.
When you look up and search for information on Hydrocephalus, or consult with medical “professionals“, don’t make the mistake of “accepting”. We accept so many things when we are ignorant (I mean that in the nicest way possible), clueless or less informed. Something I definitely was at the start of my Hydro journey.
- Don’t accept that what the medical professional is saying, is the gospel truth. They do make mistakes and don’t always admit when they don’t know or are out of their depth.
- Don’t accept that because it happened to someone else, it will happen to you. (This is a tricky one though, so use discernment. Most times, I find myself listening closely to someone else’s experiences rather than to a doctor who dismisses it purely because it falls outside of their spectrum of knowledge).
- Don’t accept that because your symptoms fall slightly outside of the list of known signs and symptoms that it should be ignored. Rather, use this list as a guide.
- Don’t accept that there are timelines to determine your shunt/ETV as no longer being a problem for you. For example, the general lifespan of 2 years for shunts and 5 years for ETVs. Both of these treatment options can fail at any time.
There are just too many things to list as usual…
Statistics are great but there’s one difference…our anatomy is different and, we are all unique – FACT.
As an example, after my ETV, I was told that if it did close up, it would do so within 5 years of being done. Passing the 5-year mark, I was given the all clear and relaxed, thinking that it was all over and I had seen the back of this dreaded condition. (Remember, this is a journey and we don’t all know what we know about it, from the start – it’s a journey of discovery). Then, I started this blog and connected with others who have actually had their ETV redone because it had closed up or needed revising for whatever reason. I even know of a Hydro sister with her ETV open but still, she needed surgery to implant a shunt. And, you guessed it, it was after the 5-year mark. The scares I’ve had since then have been nothing short of nerve-wracking, constantly questioning, wondering and doubting…everything and everyone.
The number of years after surgery is irrelevant because it’s not a one shoe fits all condition. What drives this post, is the fact that these closures and failures are probably not part of the statistical equation.
Would a statistic relax me simply because someone took the time to do the equation? No! That would be the same as taking things for granted and quite honestly, being dealt the Hydro card as an adult and what I’ve experienced since does not afford me that luxury.
But, if it works for you…then go for gold.
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