Hydrocephalus: Unfair question or not?

Hydrocephalus: Unfair question or not?

What do you want them to do?”

A question I’ve been asked by some well-meaning individuals in my life, and in general, when I’ve been at my lowest point of not having my symptoms treated. (They don’t have Hydrocephalus). Truth be told, there’s a physical reaction I have to these words being asked of me, and not in a good way. I do a check of my response, before it leaves my mouth, while feeling the following:

Hurt, Offended, Judged, Drama queen, Attention seeker, Crazy, Fake

All things I feel but have no real grounds for…or do I?

Regardless, I think what they don’t understand is, it’s taken a lot for me to get to the point of seeking help…yet again! It’s exhausting and frustrating to say the least…

Having your symptoms brushed aside, ignored, labelled as depressed and blatantly treated like an outcast is so soul crushing!

And yet, I for one, when I become symptomatic, go back with my tail between my legs – I have no choice…or do I? Praying that the next doctor I consult with, will see the urgency, frustration and sheer helplessness of my situation is a constant.

These are the facts:

  • I don’t want to have brain surgery, but I will if I have to. And, if it means I get to the bottom of knowing for sure if my ETV is still working.
  • ETVs and Shunts CAN and DO fail, at ANY time.
  • Am I driven by fear? ABSOLUTELY! (I’m only human after all…)
  • We are not all the same and clinically present differently. There’s nothing “normal” about Hydrocephalus in any way, shape or form.
  • I would love for something else to be wrong. But I NEED to know what that is!
  • I know for a fact that what I’ve physically endured, and continue to do, is not all in my head. It’s real!

Symptoms: Burning pull at burr hole, more on the inside. Slight pain down right side. Headache. Lethargic. Listless. Lack of appetite. Nausea but no vomiting (and after eating). Sleeping for extended periods. Feeling weak. Head feels foggy/heavy. Confusion. Impaired thinking. Side of head slight throb down old shunt track, just lasted a few minutes. Right ear feels blocked, Heachache constant throughout the night – unresponsive to pain killers. Worse in the morning and when laying down flat. Eyes and nose feel full. Lack of energy. Right-sided numbness – right eye, head, arm and even down to my toes (briefly). Slight burning on the side of my head. Dizziness. Throbbing in right eye.

If I have to be honest:

I for one, am not pro being shunted. I’ve had it before and the uphill battle to get attention when it was failing, was beyond ridiculous. (No different to now but my ETV lasted much longer than my shunt). The fear I feel knowing the very glaringly apparent lack of knowledge some medical professionals have, when it comes to Hydrocephalus, is scary. Sure, there are those who know enough and act accordingly in the best interest of their patients – Can I have one of them please with a side order of fries? However, I have first-hand experience of those who act to the contrary.

The consult

I have mixed feelings from my consult today. I was honestly so nervous and felt like I was just going to fall flat on my face…again. Being judged based on the opinions of other “esteemed” doctors before this one, is not unlikely. The crap thing is, I was hoping not to name drop any of them because I wanted to start on a clean slate, pretend the in-between simply didn’t exist. More importantly, I don’t want him to contact them for any further background, history or opinion. But the Neurosurgeon community isn’t that big and most of them know each other, even across countries. All I can do is pray an open mind is kept on the part of the consulting Neurosurgeon, is maintained and that my individual case is taken into account.

Prior to today, I wondered how I could get through to this doctor and somehow get him to see me as a person and not simply another “overly animated complex Hydro patient“. I felt I needed to tell him that I’m a mother, have the responsibility of providing for my family and am a working professional with an important job. (He thought my job title sounded impressive – Lol!)

I’m sitting on the fence with this doctor and only because last time, I praised with optimism and felt let down. This time, I will reserve my opinion for when the time comes.

Despite all of that, I felt listened to, though I annoyingly forgot some key factors but walked away with a clearly drawn out plan. A fellow Hydro sister who also has an ETV gave me the idea to get a comparison done between my very first MRI after my ETV and a current one. It should show any degree of closure over time.

The plan

  1. Get an eye test done with an ophthalmologist.
  2. Go for an MRI of my head and full spine, when I feel my “normal” self again, so probably in the next couple of weeks, as is my norm after recovering from the last 2 weeks of being symptomatic. (He told me to get the radiologist to do a comparison between the images from my initial diagnosis, post-ETV and current imaging).
  3. When I’m next symptomatic (at the peak of my headache) to call his room and let them know. He or a colleague from his practice will be notified and meet me at the hospital to either:
    1. Do a lumbar puncture (not his first choice).
    2. Be admitted for ICP Monitoring (which could last between a couple of hours to 15 days, taking up to a second apart readings).
      1. If Low Value – Referral to a Neurologist/Pain clinic for management.
      2. If Very low – Look for a leak and plug it (Possibility of Spontaneous CSF leak if pressure is <0).
      3. If High – Do one of the following:
        1. Redo the ETV if my ventricles are favourable.
        2. Insert a Shunt
        3. Treat with drugs like Diamox or Topomax to control the production of CSF.

My takeaway

He has other patients “just like me who have a few issues going on which sometimes don’t make sense because they’ve been bounced around too much and have differing reports from previous doctors. Most times it’s about going back to the initial diagnosis and working your way backwards to get to the answer or figure out something which may have been overlooked“.

Coming back to this, “I have no choice…or do I?“:

There probably is a choice, the alternative to what I’m doing now. I can do nothing and ignore it when I feel symptomatic as listed above, ride it out until it passes and carry on until the next time. I just have two questions in this scenario for those people who do not have Hydrocephalus and ask the question, right at the top of this post. It requires a truthful answer from anyone who cares to go for it:

For anyone who does not have Hydrocephalus: Is this any way to live? Would you?



    February 26, 2020 at 6:24 pm Reply

    I have to compliment you Skyewaters on a very well though out piece. It cannot be helped and I know that is not what you are striving for but it certainly pulls at the emotions. It is quite simply ridiculous at some of the things that are thrown our way and still expected to be able to bounce back with a smile and carry on. You know, sometimes it is just too darn difficult. Between the constant headaches, lethargy, mobility issues, balances issues, nausea, involuntary movements and speech issues, it is like trying to navigate through a minefield only without any help, metal detectors or mine locating devices. Walking around, maybe, on “tender-hooks” almost, waiting, just waiting, for the next issue, or in my case, ‘episode’ to hit and hoping that when it does you are able to contain it or come through it without any risk of further difficulty or, God Forbid, having to summon an ambulance. Add to that, when you seek the advice of supposedly learned professionals, you feel like they are not listening or just don’t hear, they make light of what you are feeling in such a way that they are not saying outright that they do not believe you, but their comments and actions say that for them.
    There is a comment that you made about getting x-rays compared from then and now and it caused me to remember. A while back now, I had both and MRI and a CT done and upon discharge from the hospital, I was handed an large envelope which contained both sets of scans. I hated to think, how much money these scans had cost, but I readily took them thinking they may come in useful at a later date as a way of comparing how my brain looked then and how, after years of transformation and containment, my brain looks now. Not for a ‘drop the mic’ moment, but as a ready record of my brain condition. I cannot remember how many times I have heard it said that the doctors wished they had scans from when this first started so that they could more easily compare. Well, at least I can look at them and say “ta-da. This is what I prepared earlier”. This is particularly pertinent as I recently changed and have a new neurologist who is going to need all the information that he can get hold of.
    Coming back to your final questions Skyewaters. Is this any way to live? Would you? To the first one. I am not living per say. I am existing. No two situations seem to be the same. I can be anywhere, doing anything, from putting out the trash cans to watching tv. The time of day does not seem to matter. Neither does the weather outside for that matter. Some people have mentioned that their symptoms elevate when bad weather is coming. No, not really for me. In a nutshell. When my situation decides it is going to change, it is just a case of “hold on, I am here, ready or not!” and that is sometimes, just about as much notice as I get.
    To your second question, Skyewaters. Do we really have a choice? We can keep going with our head down and try and safely make the best of life that we can or are allowed to or end up a blubbering mess confined to sitting in the corner of the room, hoping and waiting to die. I personally prefer the first choice. Now, that does not mean it is not sometimes excruciatingly difficult, frustrating and upsetting feeling useless and a burden to our families. But I know that is just me and after a little ‘down time’, it usually passes. All the while hoping beyond hope for a piece of uplifting and positive news, no matter how small. Just something to hold on to. We all need that. Don’t we?

    • Skyewaters

      February 27, 2020 at 5:50 am Reply

      We certainly do Ian.
      The questions, undoubtedly, will receive different responses, from those living with Hydrocephalus and those who do not. Whether it’s fair to ask, “What do you want them to do?”, is probably more what I’d like to know. This too will depend on who’s answering. We are the only ones who know our reality, something so far from anyone not diagnosed with this condition, could ever begin to understand.

      Thank you for your comment💙


        February 27, 2020 at 6:14 pm Reply

        Thanks for your reply Skyewaters. I have often said that I would not wish this ailment on anyone that is why I have offered myself out as, basically a “lab rat” for medical studies It may be too late for me, because my brain is now permanently damaged, but if through my experience I can bring comfort to someone who is just starting along the road of Hydrocephalus, I will gladly do it because as we both know, when we first start out, we are full of questions with very few answers.
        On a similar but different topic, Skyewaters, are you associated with the Hydrocephalus Association in Maryland? I have long been associated with them receiving emails and the like. They have a conference every year which I would love to attend. There are like-minded people with Hydrocephalus plus people on the front line to meet, greet and answer questions. There are also activities and booths with information too. I would love to go, but unfortunately I cannot usually afford to go. There is supposed to be a way to apply for financial assistance or ideas to raise money to pay for the trip, but as yet, I have not gone that route. I just wish they could make the conference more affordable to the masses. Have you seen the details or have you ever been to a conference? This years conference is in Houston, TX in June 25-27.

        • Skyewaters

          February 27, 2020 at 8:27 pm Reply

          Agree, we don’t wish it on anyone especially as we know the extent of what we endure. It just saddens me when those closest to us aren’t as empathetic as we need them to be.
          As for the association, no, I’m not. I moved to Australia just over a year. But, I agree, it would be something I’d like to be part of.

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