Hydrocephalus: What shunt type is right for you…?

Hydrocephalus: What shunt type is right for you…?

After diagnosis (Age 29), I was told by the attending Neurosurgeon, that he’d be putting in a Medtronic Strata Programmable VP Shunt (Ventriculoperitoneal). It goes into the ventricle in your brain, fed down the side of you head, behind your ear, down your neck and chest, and into your abdomen. (Hence the 6cm scar, just below my sternum). The “beauty” of it: adjustments can be done from the outside using a magnet, by placing the dial over the valve, on the side of your head.

My brain didn’t like that shunt.

Within the first two years, it gave me endless trips to the Emergency department at the hospital. Each time, I’d be sent home with nothing to show for it. The surgeon grew tired of me contacting his room with, “Something is wrong” calls and coming to see him whenever I became anxious about this thing in my head.

In my experience with a VP shunt, the settings would change on their own. Something I’ve since come to know as a common occurrence with these valves, especially under certain circumstances. He didn’t take much notice of me after surgery (In fact, he didn’t before surgery either as he didn’t believe my situation warranted surgery or that my Hydrocephalus was bad enough).

His bedside manner certainly left nothing to be desired!

He was undeniably one of the biggest reasons why I ended up writing a book about my Hydro journey. I remember making an appointment with him once, where he adjusted the settings, having noticed (matter of factly) that it had changed and sent me on my way. He adjusted it the wrong way, (the next day), I couldn’t wake up for work or, keep my eyes open long enough to take care of my kids. I slipped in and out of consciousness…

The amount of trust and faith we place in the hands of a surgeon, is undeniably huge…Something, which morphs with time, depending on our experiences and “maturity” with this condition.

Led into his office by my husband the next day, totally out of it and literally feeling like a space head, he changed the setting to what he believed to be a more tolerable one for my brain. The shunt was over draining and, I literally felt like the life had been sucked out of me. It took my body just over a week to recover from that, physically. As for mentally, it scared the living daylights out of me! I developed slit ventricles because of the over draining, something which seems to have resolved itself, or so I’m told… (I’m not even sure if that’s possible).

When I eventually found a doctor to listen to me, I ended up having surgery again – 3, over 3 days:

Day 1, 30 November 2009 – Part of the Medtronic VP Shunt was replaced.

Day 2, 1 December 2009 – The whole shunt system was replaced with an Orbis sigma shunt valve.

With conventional valve systems, common complications such as overdrainage leave patients continually adjusting their lives around their shunt system. With OSV II and Integra NPH, the valve system is continually
adjusting to them
“.

This one didn’t last a full 24 hours and was removed.

Day 3, 2 December 2009 – I underwent an emergency ETV instead. (That’s 10 years ago, this coming Monday!)

Thankfully I wasn’t fully aware of what was happening, slipping in and out of consciousness…

FYI – It IS possible to experience shunt failure, have conversations with people and NOT remember a damn thing!

Not all shunt types will agree with your body. I wonder what the criteria is for choosing the shunt system. How does a surgeon decide which one will be the best fit for you? Looking at the two shunts I’ve had implanted, they’re probably not the worst to have been used, especially given their design, intent and purpose.

I don’t remember having a discussion about why the Medtronic programmable valve was the one chosen for me at diagnosis. I was too much of a Hydro virgin to know any better anyway, or respond when asked, “Do you have any questions?”, after he ran through the procedure with us. Maybe I was simply overwhelmed, listening, as he explained what was awaiting me the following week – brain surgery!

If I look at my own history, I’d say it’s a crappy situation when the shunt the Neurosurgeon implants, decides to become the playground bully. Something, so many people with Hydrocephalus experience, young and old – hours, days, weeks, years or even decades later. Mine definitely didn’t play nicely and I grew to dislike it immensely, regardless of the fact that it was saving my life. But I suppose there’s no real way of knowing how one’s body and brain will react, is there? Some people have a higher regard, and are a bit more thankful, for their shunt system. Others despise the contraption.

The journey we each have is different which is why some people will get what I’m saying and others not. That’s OK!

Do you know enough about your shunt system? Or any for that matter? In hindsight, and a little wiser, I’d probably research the crap out of it even if it’s just for my own knowledge and/or peace of mind. Like anything really, reading reviews and the experiences of others is useful in my opinion.

BUT, being aware first and foremost of the fact that shunts are NOT a cure, they CAN and DO fail – at ANY given time. This is probably key. If anyone tries to tell you differently – RUN!

4 Comments

  • Miss Linda Baggio

    November 30, 2019 at 12:36 pm Reply

    Hi Skye,
    Another great article, as usual.
    I think you need to have put this up onto our Hydrocephalus groups.
    I’m so sick of ignorant people saying ‘they’re ‘cured’ and they ‘don’t need their shunts any more’.

    • Skyewaters

      November 30, 2019 at 11:44 pm Reply

      Thank you Linda.
      I’ve posted to a few of the groups I belong to but feel free to share, in case it’s a different one.?

  • Debbie Bowlin

    November 29, 2019 at 4:49 am Reply

    I have to say I love reading your stories not just love reading them but it teaches me a lot about my shunt about my emotions my physical disability and I really look forward tarot reading what you have to say about what you go through in your life and I don’t know if I told you this before but I’m 55 years old I have spina bifida hydrocephalus paralysis from waist down and a double amputee well at least that’s what the doctors call it my left toes are gone my right leg is amputated at the knee anyway sorry to go on and on you made me aware finding out what kind of shunt system that I have I just found out about a year-and-a-half two years ago that I was not supposed to have a I think it’s an MRI on my brain I can’t remember what it’s called the reason I know that is because when I went to have one young lady told me to wait a minute at the door before entering the room she looked at a guess my charger something and found that I had metal on my right side of my head and said nope we can’t do it now mind you this is the first time that I can remember someone telling me that I had metal in my head so now I have to go and tell these doctors know I cannot have an MRI CAT scan of the brain or anything like that sorry I keep going on in line I just wanted again tell you I look forward to reading your story and learning more about the trials and tribulations that you go through on a daily basis you are a very strong person at least by the biography that you write about yourself I wish you the best and well that’s like you’ve already said don’t settle for anything less God bless you my friend keep your head up as much as you can LOL I look forward to reading or talking to you soon sweet dreams and I hope you sleep on butterfly wings God bless

    • Skyewaters

      November 29, 2019 at 8:32 am Reply

      Hi Debbie
      Sounds like you’ve had quite a journey yourself! It’s good to know that you gain something from what I write, that’s the intention. If my experiences help others in any way, then that’s a great result for me.
      I know they always ask if you have mental anywhere in your body or if you are pregnant when doing MRIs and CT scans. Precautionary measures…
      Best wishes and Thank you for your comment?

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