Hydrocephalus: Being around people who understand the language you’re speaking

Hydrocephalus: Being around people who understand the language you’re speaking

As a person living with Hydrocephalus, be it yourself or someone close to you affected by this condition, it’s easy enough to understand the medical terminology.  Well, at least better than anyone who is just an “acquaintance” of this condition.

I remember when I was first diagnosed and heard the word Hydrocephalus.  It was a struggle to even pronounce, much less spell it.  I slowly learnt the various terminology and in time, from way too many Google searches (Yes, I’m a self-confessed Googler especially since I believe knowing my opponent is the best defense I have even if the odds are stacked against me from time to time), I found it easy enough to navigate my way around the lingo.

I’m sure it can be very daunting and overwhelming once a Neurologist/Neurosurgeon starts throwing terminology around that you simply can’t wrap your brain around.  Cerebrospinal fluid, lumbar puncture, aqueductal stenosis, slit ventricles are just a few which come to mind.  However, it’s like anything else in life, the more you use it and the more you hear it, it becomes second nature.  If there’s one thing that I appreciate though, it’s the fact that most of it can be broken down into acronyms.  But, they can lead to some amusing misunderstandings.  For example, in South Africa, there’s a TV channel called eTV.  The alternative treatment to a shunt is called an Endoscopic Third Ventriculostomy (ETV).  When explaining my condition and subsequent treatment to someone from South Africa, it’s easy enough to see how they can confuse the two.  Similarly, only someone affected by the condition (or those carers who make it their life’s mission to understand the terminology), will truly understand.  This is especially true when you suspect something is wrong and ask a question in the support groups.  Our symptoms might differ but there are very close similarities and events which guide us into knowing when the alarm bells need to be raised.

I know when someone explains something to me that I don’t necessarily understand or have an interest in, the words just fly over my head.  As an example, my husband and boys play cricket, a game that doesn’t interest me in the least.  I love watching my sons play but getting involved in the analysis discussion after a game between them and their dad is something I avoid.  I do this not because I’m not interested but simply because I don’t understand and it just seems too hard.  LBW, chipping, slow balls and spinners are just a few things I’ve heard them talk about.  By the same token, I know they’ve heard me talk about a shunt and an ETV but they don’t necessarily understand how it all fits together, what it’s for, why certain things happen or what the risks are.

Despite my telling them that I am not cured, they don’t necessarily understand it that way, because “I look fine“.  Anyone with Hydrocephalus would probably go “Cured..? Pfft!  What are you smoking?  Gimme some of that…

Things like scar tissue, which has recently been mentioned in my medical treatment, is something that I have heard of sometimes blocking a shunt, therefore, raising the need for a revision.  But, I’ve never really taken notice of it because it didn’t affect me in that way, you could say it was something I tossed aside once my shunt was replaced by my ETV.  Though, I now understand that scar tissue can cause my ETV to fail as well (There’s just no winning is there?).

I think it’s probably more difficult for someone else (an outsider) to understand the importance of knowing the terminology associated with a condition like Hydrocephalus.  Once you’re diagnosed, with any condition for that matter, you become fully invested and own it.  It becomes a part of you…

This is where I think the support groups are a great way of feeling like you’re not alone and you have people who can share in your fears, the success of passing a milestone (week, month, year of no headache or surgery) or just a sense of belonging.  If there’s one thing I’d love to do (it’s on my bucket list), it’s to attend one of the Hydrocephalus conferences as well as walks to raise awareness and money to aid research into a cure.  Being physically in the presence of others just like me and to feel like I’m more than just a surviving statistic.

I love the connections I’ve already made because of it and, if you’re one of them, thank you for being there.  This condition is a lonely one but it doesn’t have to be.  I wish more than anything that it didn’t exist but it does and, having life deal me this hand at age 29, I’m not going to ask “Why me?

I’ll just be thankful that I at least have people who understand the language I’m speaking even when no one else does ??



  • minionmayhem514

    April 9, 2017 at 10:56 pm Reply

    Periventricular leukomalacia. Multi Loculated meningocele. Are you a doctor? No, my daughter has hydro. Lol. We should get honorary degrees.

    • Skyewaters

      April 10, 2017 at 2:43 am Reply

      Love it! The fastest course you’ll ever do and probably pass with flying colours?

  • Kelly Varga

    April 9, 2017 at 10:56 am Reply

    This. Exactly.

    Thank you dear friend for putting these frustrations and successes into words that can help bridge the gap between the chronically ill and the perfectly healthy groups.

    In my very recent experience (it started four and a half weeks ago), I found that my 14 years of living with, carefully studying, volunteering for, and collecting friends among neuroscientists and neurosurgeons, etc. didn’t mean that I had a say in ANYthing they tried!! AT ALL!! I had to get a few pediatric neurosurgeons involved because I honestly felt like my neurosurgeon and residents were going to kill me. My husband and I have talked (ad nauseam!!!) what we could possibly have done differently and the only thing we could come up with is that maybe if we dumb-ified our language and deferred to their superior intellect of a subject they spent MAYBE 10.5 minutes reading about in their classes. I have studied the physiology of and treatment for hydrocephalus for 14 YEARS!!! I’ve lookd at my brain scans for hours upon hours. And when I point out the ridiculous anomalies to a family member or a dr, they brush it off as being perfectly normal and because you’ve researched the crap out of this health drama and have been doing this for a long time,

    You’ve heard me say this a bagillion times… Trust yourself. Trust in the Lord. And 9.9 times out of 10, you’ll be EXACTLY right!!

    • Skyewaters

      April 9, 2017 at 7:22 pm Reply

      Thanks for your comment Kelly.
      Following your journey is a tough one. I feel your frustration and fears. More than anything I wish I could ease it for you but I know better. Seeing how you fight, every step of the way, is a testament to the courage and strength we can only get from our faith in God.
      Just keep going Hydro sister???

      • Kelly Varga

        August 12, 2017 at 12:59 pm Reply

        I still cannot believe what happened in the days following that comment of mine.

        I showed up at my post op appointment with my hospital bag packed because they HAD to replace my shunt. It was at the highest setting (not high enough!) and I was still overdraining. I couldn’t lift my head off my pillow let alone stand up! without barfing for that sickening overdraining pain. The neurosurgical team literally fired me and my husband. “You two are very difficult to work with. There is nothing more we will do for you.”

        We were absolutely stunned silent on the 45 min drive home.

        We showed up knowing exactly what they needed to do (replace the stupid shunt we told them they shouldn’t place at all!) and check out the incisions we were 99% sure were infected.

        The next two weeks were the worst hell of this entire experience! I spent almost all day every day trying to transfer my care to a different neurosurgical team.

        No one would take my case because I was a hot mess needing emergent brain surgery and I most likely had meningitis, too.

        In the middle of hell itself, i finally found a private practice neurosurgeon who didn’t blink at the complexities of my case. She met with me for THREE hours going over every detail of my case from diagnosis when I was 20, that first year of repeat shunt failures, the ETV, and the previous ten months of six brain surgeries.

        It took four more brain surgeries and countless IV and PICCline treatments over ten weeks to get my brain and body happy again. But we did it!

        At the moment, five weeks post op from brain surgery #10 for the year (14 total for hydrocephalus), we’re trying to buy me time for my brain to calm the crap down from all the trauma of this past year, but it’s getting better every day.

        My ETV is patent and working, but scar tissue beyond the reach of even the best neurosurgeons (it’s beyond the basilar artery in the subarachnoid space) is preventing my CSF from getting to the sagittal sinus area where so much CSF is usually reabsorbed.

        I still have a hard time reviewing these last 15 months and the drama of getting the help I absolutely needed. But a text from my new Neurosurgeon a few weeks ago sums up the miracle of finding Dr Jodie Levitt and the relief I’m feeling now. My family was visiting my inlaws in southern Utah when a huge thunder and rain storm came up from Arizona and killed our weekend plans. Dr Levitt sent me a text asking how my brain was handling the storm.

        “How are you feeling with that storm in town?”

        my reply was immediate: “I love you and thank you for checking in. And yes, my brain hurts. A LOT.”

        She then replied with several tricks that might make the pain calm down and after sending her the phone number for the local pharmacy, she called in some meds that helped provide a bit of relief.

        It took 13 months from the initial onset of symptoms plus DOZENS of beyond frustrating appointments to find Dr Levitt and it was totally worth it.

        • Skyewaters

          August 12, 2017 at 8:45 pm Reply

          She sounds like a diamond in the rough. I need one of her right now. I know when I am down after a consult, I forget they are out there. But, because I had one before, I know these doctors ARE out there. I will find one again, if it’s the last thing I do.

          What you have had to endure I have no words for. I pray your brain gives you a break already. Stay strong.?

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