Hydrocephalus: Never give up on yourself…

Hydrocephalus: Never give up on yourself…

If there’s one thing I’ve come to learn the hard way in life, it’s to listen to your gut.  No matter how many times life teaches me this lesson, I still fall prey, to learning the hard way.

You know, that little voice that you hear but can’t quite place where it’s coming from or, if it’s even real.  You brush it aside like a phantom pain and go about your day until…bam!  Something happens and you have a de ja vu moment…

I figured, I’m always advising or telling others who read my blog to get another opinion, especially if you aren’t happy with the care you’re receiving.  I suppose it’s about time I follow my own advice too.

When I got sick a few weeks ago (beginning of March), I felt a familiar right-sided numbness, from head to toe, which I mentioned to my GP. (Something, which has been outright ignored and disregarded over the last few years).  I had a headache which wouldn’t go away or respond to pain meds, stopped eating for a couple of days, felt weak and lethargic, nauseous and just miserable. He recommended I see a Neurologist to get their opinion, in case it was related to my Hydrocephalus.  I explained that I was hoping to get a referral to a Neurosurgeon instead and gave him her details…

So, I met with my new Neurosurgeon yesterday.  Something I’ve been a bit anxious about, much like having to start over with a new relationship and entering the dating scene after years of marriage.  (I don’t think I would even venture down said path but, thankfully, this post isn’t about that).  I’m grateful for the referral Josh’s mum gave me. This doctor comes highly recommended and is regarded as one of the top 3 surgeons in the city.  But, I’m not prone to put anyone on a pedestal just because their reputation precedes them. We are all human, we make mistakes and sometimes we do things better than others. Besides, looking at it like this, I don’t set myself up for disappointment (if and when) things don’t go a certain way. I will say this though:

She is a breath of fresh air. I love her attitude towards treatment and more importantly, her open-mindedness. The fact that she sat across from me and looked at me when I spoke, created a relaxed feeling in me. We didn’t have a big desk between us and, I didn’t feel intimidated by an overly big-sized ego. (All things which have put me off by some of her predecessors).

It’s been a bit of a twist for me in more ways than one.  After 12 years, since my diagnosis, I’ve been through so many male doctors that I’ve decided, why not give a female doctor a try?  (No, I’m not being sexist or a feminist – I just have nothing to lose).  When I wrote my book, Floating faithfully, I decided not to use the names of the actual doctors whom I encountered and who treated me along the way.  Instead, I used letters of the alphabet, in hope that I’d never reach the end of it (or come close to it, for that matter.  Also, I don’t want any lawsuits for telling the truth!).  This new surgeon, is doctor Lironically, the 12th letter of the alphabet…

I explained my symptoms to her from a few weeks ago and she done the usual Neurological tests: Following her finger with my eyes, closing them and holding my arms outstretched, walking a straight line – one foot in front of the other.  She asked some questions about my history from diagnosis to when I had my shunt removed, replaced and subsequent ETV.

She suspects I might be experiencing hemiplegic migraines, something which I haven’t heard of before so, I’ll be curious to see what comes of the referral she’s doing for a specialist to look into this.  Reading up on it, there certainly are a few familiar signs and symptoms.  Furthermore, she suspects I might be experiencing intermittent ETV Failure. (Now why didn’t I think of that? Duh!!!).

Despite the ETV hole appearing to allow good flow through, there may be an obstruction which we can’t see on the MRI.  Do you know you can have a fine thread-like obstruction, unseen on this type of MRI?” 

(I smiled, nodding my head. I know all this, because my Hydro Buddies in the ETV group, have shared their experiences with me – I plan on writing a book on ETV Failure, based on our experiences, some day).

She continued to say: “ETVs don’t last forever…It may be that when you have an episode, pressure builds up and is simply too much to push through the ETV hole – causing your symptoms and then eventually when it does manage to push through, you start to feel better.  But that doesn’t mean there isn’t a problem and that it’s not closing. It would also explain why we don’t see anything on the MRIs because you’re not having it done at the time of the headache”.  

I also told her about the ICP Monitoring I had done in August last year and how the results came back normal. However, this was done almost a month after my last episode – so it all made sense!

Conflicted feelings ERASED!!!

I looked at her and my heart silently rejoiced…not because of what she was saying (because I already knew all that was possible). But, because she was thinking outside the textbook and was actually listening to what I was saying to her.  Also, if she was telling me these things, it meant that she had experienced/seen it before.

The inevitability of our reality…

Her parting words to me were, “I’ll see you in a year when you have your next MRI but, I have a feeling it may be sooner”. 

Bottom line is, I’m facing ETV surgery again…I just don’t know when. And, waiting till the next time I get “sick to act on it, is driving me a little batty – the frustration and fear of every Hydro warrior.

Driving home, so many thoughts ran through my head and after going through the motions of feeling a tad sorry for myself because of the struggle it took to get to this point, I started to devise a plan.  You see, when I walk into these consults, I forget important things – like when she asked me how many times I’d had these episodes, I said twice.  That wasn’t accurate. It wasn’t intentional though, I was just too focussed on the spinal pain I have at the moment, something I felt with my episode in August last year.

I can’t remember the exact number of times but, part of doing this blog, is so that I have a record of everything I’ve experienced on this Hydro journey.  My plan for the next couple of days, is to trawl through all my posts and draw a timeline of events.  Once I have this, I’ll either go and see her again or send it through to her for consideration.  By my own calculation, the frequency of these episodes are getting closer and more severe. 

Since I haven’t experienced ETV failure per se (just shunt failure), this is a definite learning curve for me too.

Oh, and on top of all that, my lovely Thyroid may just be next in line for removal as I await my referral to a Thyroid surgeon. And, apparently I have C5/C6 degeneration in my spine – I guess I just have to live with the fact that I’m ageing early! Plans to find a level of comfort in dealing with this, are already underway with a Head, Neck and Jaw physiotherapist, next week.

The best advice I can give you, if you’re going through or have experienced the same as me is, Never give up on yourself…!!!


  • Skyewaters

    May 13, 2019 at 11:16 pm Reply

    Hi Pati. I don’t know about it fixing itself. The NS I saw a few weeks ago told me as much. But, it doesn’t mean that we should live with this. What it means is, there’s an indication, that there may be a problem affecting the flow. In my case, she told me the ETV would have to be redone should the symptoms present itself again.
    Also, there are a few contacts I’ve made in the ETV group in Facebook who have had failures outside the norm, this being one of them.
    I wish you luck with this and glad you realised you’re NOT saying crazy things 💙

  • Pati David

    May 13, 2019 at 2:30 pm Reply

    I recently was told by my NS that I have a spontaneus ETV. I didnt know this could even happen but after a little research in the web I found out that even though is rare it can happen. Reading your post I felt like suddently somebody could get what I feel. In the last year I felt more than once that sometimes I have pressure that after a while go away, I tried to explain it to my hsuband that ot felt like a kitchen pipe that was like obstructed but slowly fixed itself. I thouhgt I was saying crazy things and I didnt even know how to ask my NS about that feeling. For the last 2.5 months I feel OK regarding to hydro. How did you learn that your Etv can get obstructed but then fix itself?

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