Hydrocephalus : Passing an ETV post op hurdle

Hydrocephalus : Passing an ETV post op hurdle

2 December marks my 7 year post op hurdle.

I’ve done it…defied the odds!  (She says optimistically). I was told after my operation, that the ETV could close and it normally happens within 5 years.  Whether I’ve come to the end of the track or am charging ahead toward the next hurdle…who knows?

Every year that passes, without needing another brain operation, will from here on out be one to celebrate.  I can’t in all honesty say that it’s been one without any drama.  In fact, I’ve suspected failure a few times…here, then here and again here.  Having no experience in this, I relied heavily on the Facebook support groups in recognising my symptoms.   But, I’m still awake (not in a coma) and have to say thank you to God because I’ve been headache free for a long time now (Adding to the hope that I’ve seen the last of brain surgery).  I’m not gloating, I’m not being sinister…in fact, I’m extremely thankful.

I wish I could honestly say that I believe it’s all over as far as my Hydro journey goes but unfortunately I can’t.  

I might be one of the lucky ones who go without needing another operation for the rest of my life (Please God let it be so).  I might not…

If I am blessed to never need one again, it will mark the start of a detour…one that will see me dedicate more time to Hydrocephalus awareness.  (More on this in another post).

There is so much room for improvement and despite us coming so much farther than we were years ago, there’s always more required…until a cure is found.

Hydrocephalus was thrust upon me, like so many others, quite unexpected and in the prime of my life.  I feel robbed in a sense…robbed of the time it took away from me and the after effects I have to deal with.  All the time I’ve spent worrying, preparing for and recovering from surgery…all the time I’ve spent fighting to be heard and fighting the medical system…the list is endless.  Admittedly, it’s a drop in the Hydro ocean compared to my fellow warriors who have had close to or more than 100 brain operations.  (You have my utmost respect).

It alerts me to the fact that awareness of not only the condition but the struggles that go with it, is more of a necessity.

We as members of this Hydro family need to stand together because in more ways than one, we are the links to sanity for the next one.  Your experiences right now, they are what others will learn from, grow from and use as a springboard to sanity, resolve and acceptance.  This is one of the main reasons why I wrote all about my journey thus far. (Not a “plug” for a book as someone so nastily commented a while back).  

We are the ones who can make life easier for the next person diagnosed as an adult or the next mother/father who is stressed beyond sanity because they fear for their newborn.  

Shunt or ETV…there’s not much difference (in my opinion) other than in the type of procedure.  The fears and concerns don’t go away simply because of the treatment you’ve had. The single common denominator is the fact that we have the same condition…this is what joins us.  Our fears and joys are all part of the same tree with different veins branching off to establish its uniqueness to each individual.

I will remain optimistic, I will remain faithful and most importantly, I will be thankful that 7 years ago an important decision was made (for me), which saved my life.  I will remain ever grateful that my daughter will always be a reminder of that time.  Seeing the little girl who made it (without any side effects) through 3 operations over 3 days while growing happily in her mother’s womb, will always be a reminder of the presence of God in my life.  I cannot in good conscience dismiss this very important event in my life and turn around saying “I don’t believe in the power of prayer or the presence of God“.  I believe and know that people were praying for both of us before, during and after that time.

So…here’s to the next 7 years…hopefully with less worry and drama.

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Thank you for taking the time to read.

I blog about Hydrocephalus and Selective Mutism to give a voice to the millions of people around the world with this condition and disorder.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

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