When I was first diagnosed with Hydrocephalus, it was a whirlwind time filled with emotion. I can’t really say that I registered much until after my first operation, which was literally within a few days. It was a little surreal…to say the least.
I had my shunt placed on a Thursday and home by Saturday. Looking back now, I wasn’t part of any groups to ask for advice or well…anything. I felt alone, scared and totally unsure of what lay ahead. I can’t say that it was a time that I fully appreciated having a shunt placed. I had no knowledge of this device, it’s function or that I needed to feel like it was going to be my “saviour”.
In fact, I didn’t realize just how serious this condition actually is. Sure…I read up as much as I could online but nothing could prepare you for what comes as a package deal as we all experience things differently.
At first, I was in awe of the fact that I had a spare part but in time, having recurring symptoms scared me. What made it worse was the Neurosurgeon who treated me as if I were a nuisance…a little bug that needed squashing simply because it crawled.
I felt lost for a long time…
At one stage, I think he adjusted my settings on the programmable shunt just to shut me up. This proved to be the wrong thing to do as it was over-draining and put me into a comatose state for a few days. For a mother of 2 young children at the time, it rendered me incapable of caring for them since I literally passed out on them while we were alone at home.
I slowly recovered from that but I don’t think I was the same again after that. In fact, I have slit ventricles now as a result of that little stunt he pulled. Hence, my animosity towards this Neurosurgeon grew but also toward the device he put inside my head.
The transition to an ETV was a whole other story, I could write a book about it. (In fact, I did).
My ETV has served me much better than my shunt ever did. I can’t really say that it gives me peace of mind because I’d be lying. I’m not sure if anyone can ever reach that level once diagnosed with Hydrocephalus.
However, my shunt was replaced after just over 2 years from being inserted. My ETV has just passed its 6-year mark and I have not had half as much problems as I did with my shunt. I’ve had “bad” days afterwards (and still do from time to time) but nothing in comparison to when my shunt was busy failing.
Shunts can over or under drain causing other problems. ETV can close but this generally happens within the first 5 years. I’ve heard of much higher numbers of them lasting and it gives me hope. At one stage, I read that this procedure is not done/recommended for babies as they are still growing and can have blockages more often. Membranes can grow over the burr hole thereby rendering the ETV non-functional, etc.
However, I’ve also been reading stories of babies/children who actually have had an ETV done. I pray it serves them just as well…for longer.
My shunt was a magnetic programmable one and the scariest thing I found out about afterward is that it could adjust on its own at any given time. Normally, the Neurosurgeon controls the setting with a magnet placed over the shunt valve to adjust it manually. The week after having mine adjusted the wrong way is not one I would ever wish to face again.
My hope is that I would never need surgery again (as every other person living with Hydrocephalus/parent). If however, I did need further surgery, I would opt for a repeat of the ETV. The surgeon I consulted with last, a few months ago though, spoke about a shunt being placed. I never did get to tell him what my preference would be as my head was reeling from being told about my slit ventricles and the possibility of going into a coma. At that stage, I think it is fair to assume (and hope) that they would do what is best at that given time.
I think my slit ventricles will probably be factored in as well but for now…it’s all Unknown.