Shunt vs ETV

Shunt vs ETV

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.

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  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!

No Comments

  • minionmayhem514

    December 13, 2015 at 3:35 am Reply

    I also hope you find a neurosurgeon you can trust. I trust my daughter’s surgeon 110% and it is such a relief to not have to worry about him, along with everything else.

    • skyewaters

      December 13, 2015 at 5:00 am Reply

      Thanks. I might get despondent but there comes a point where I will fight everyone around me to get the care and attention I need.

  • KARL ROTHKO

    December 13, 2015 at 1:35 am Reply

    I was considered for ETV ,but was thought too risky(that there were multiple blockage sites) in light of the extreme parasitic infection that had caused the hydrocephalus. I too have SVS,(Slit Ventricle Syndrome), a symptom of long term shunting. The SVS has been considered as a possibility for the causes of my episodic extreme loss of mental acuity ,lethargy,and and extreme headache, but can’t be definitive due to the messy nature and extent of the brain damage, lesions and inflamation, ,let alone the hydrocephalus
    Sorry to hear you’ve had an N/S that views you as a nuisance. Thats awful. You shouldn’t have to put up with that.
    Here’s to best of health and a better N/S

    • skyewaters

      December 13, 2015 at 2:20 am Reply

      Wow! That’s a lot to take in Karl. Apart from not ever wanting to go through surgery again, I do wish I will find a NS I can trust again. Thanks for sharing.

  • Fee Croft

    December 12, 2015 at 9:26 pm Reply

    I have a programmable shunt,a anti syphoning device plus slit ventricles and I produce too much protein in my brain fluid causing it to be too thick…..I have had my shunt since 1973 but all my problems started in 2010 when the shunt needed replacing,I have just had my 27th surgery since then….it’s very frustrating and tiring especially with 4 children to look after
    I hope everything goes well for you
    Fee

    • skyewaters

      December 12, 2015 at 10:45 pm Reply

      Thanks for your comment Fee. I wish the same for you. It most certainly is frustrating and tiring.

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