I know at this very moment in time, your head is probably reeling with questions and your body is experiencing fears beyond anything you’ve ever experienced. The moment you heard the words, you probably shut down a bit or tried to absorb every word coming out of the doctor’s mouth. But, you missed a few and now you find yourself searching the Internet for something…anything that will help shed some light on the unknown place you’ve been thrust into. You probably also have some convictions and moments of thinking that the things you are reading, other people’s stories, won’t happen to you. Surely, it’s not that bad…
And, the next second, the whole world feels unreal and so uncertain that it scares the crap out of you.
The fact that you have just gone from having a perfectly Normal and probably monotonous or everything is wonderful day to a fear of having to face brain surgery, in milliseconds…is the scariest ride you’ve ever been on.
Well…I am here to tell you that, guess what…you are not alone. You are not the first and you won’t be the last…until a cure is found.
Give yourself time to absorb what’s just happened. Feel the right to freak out, you go ahead and lose the plot even if it’s just momentarily. Be scared, be unsure and give yourself the right to ask as many questions as your brain can conjure up and then ask some more. In fact, you’ll be asking questions for a long time to come.
Realise, quicker than most, that as lonely as this is going to feel at times, you have support. The Internet is full of information, Facebook groups pop up everywhere, you just need to find the one which suits your needs best. For example, I belong to a few different groups. My first OP was to insert a Programmable VP Shunt, therefore, I joined groups where people with shunts could relate to me and vice versa. However, my shunt has since been removed and I am now surviving with an ETV (Endoscopic Third Ventriculostomy), a shunt alternative. You might want to read up on your options and discuss the best solution for you with your surgeon. As with everything in life, there isn’t a one size fits all and each treatment option has its pros and cons. Also, I later found and joined a group specifically for people with ETVs.
Find a group you feel comfortable with and know one thing for sure, others will listen, help and provide a kind of sanity that money just cannot buy. We are all over the world…some stories are worse than yours and others well… let’s just say – YOU ARE NOT ALONE. We might not be medical professionals but I do believe we are more informed than most medical professionals and I for one, will take the advice of a fellow Hydro Warrior any day. Let’s face it, we have to know this condition well enough because our survival depends on it…
Challenges to be prepared for
Others, including (especially) the medical professionals, will not always understand or have empathy for what you are experiencing or going through. From this point onward, you need to realise THE most important thing I have to tell you. YOU NEED TO BE YOUR OWN VOICE AND ADVOCATE – Above all, trust your gut. This is going to be the toughest fight you will ever fight. If (and this is a very BIG IF), you are blessed enough to have a good, caring and proactive Specialist/Surgeon, then cling to them for dear life. Some surgeons I’ve dealt with, have left me feeling like a cheap one night stand (not that I’ve ever been one but I can only imagine…like in the movies). Be warned…
Also, you will have times when you can’t tell the difference between a normal “flu” like illness or shunt/ETV failure…Trust your gut and get medical help.
Another challenge, prepare yourself for loss of memory or even cognitive challenges, however, I have had some interesting moments return to the surface. Some people are affected worse than others but being prepared for this helps. After my last surgery, I needed Physio to learn some basic things, like walking, using stairs and getting up after sitting or lying down, amongst other things. I won’t lie to you (and I’m not trying to scare you either), it’s going to be a challenge. Here’s the guarantee though, you will get through this OK…as OK as you allow yourself to be. Expect change and don’t put too much pressure on yourself. You might even come through it unscathed but at least it won’t hit you like a train being unprepared.
The sooner I accepted the fact that things are different now to before diagnosis and my first surgery, the better. The sooner I realised that, yes, some things I do differently now because there are slight “limitations“, I found ways around it to give me back some of my control or power. There are times where I feel helpless and like giving up but that’s not what I’m here for…and, neither are you.
One of the most important pieces of advice I gave you above is to be your own voice and advocate. This is so true when you have a condition like Hydrocephalus. Alongside that, make sure you have someone who can be that voice, if and when you can’t. I’ve found that doctors have textbook knowledge and at times, I justify their ignorance by saying they don’t physically know what you are feeling. In fact, anyone who does not have the condition (including your family and friends), fall into this category. That’s OK…infuriating but OK. It’s important that you get to know the signs your body gives you. You have front row seats to that and are the only one who can go to bat when it’s crying out for help.
Finally, I have only one more thing to say to you…Welcome to the Hydrocephalus Family…and remember, you are never alone!