Hydrocephalus: When other medical professionals have a sense of urgency about your symptoms.

Hydrocephalus: When other medical professionals have a sense of urgency about your symptoms.

To say I have been well and truly prodded and poked would be about right!

Sunday – MRI, Monday – Endoscopic ultrasound, Endoscopy and Colonoscopy (ugh!), and Tuesday – Thyroid nodule biopsy

The anaesthetist yesterday asked me about my medical history, very interested in my Hyperthyroidism and Hydrocephalus. Her questions were priceless and struck a chord, an empathetic one. It’s always interesting to me, to see how other medical professionals (outside of Neurosurgery), seem to have a sense of urgency or need for you to be followed up, when you tell them about your symptoms. 

For example, when asked about my Thyroid, I responded to her questions, saying; “Sometimes I feel like I’m being choked, or food is getting stuck or when I lay down, I struggle a bit to breathe“. But, I know these symptoms could be worse and mine are mild in comparison. She wanted to know if anyone had ever done an X-ray to check if there’s pressure on my windpipe. Short answer…no. She looked perplexed. I told her I have a biopsy the next day so hopefully that’ll give me some peace of mind, since it’s just for precautionary measures.

Then she asked about my Hydrocephalus and how that’s been going…

I told her; “I’ve become increasingly dizzy and my head literally feels like it does a 360 degree spin, a few times and then settles. It doesn’t matter if I’m laying down or just sitting watching TV or working. Leaving me feeling extremely dizzy and nauseous. This is happening more often than not. My headaches (probably more migraines but who knows?), have been increasing and I feel nauseous most days“. She was curious to know if I was being followed up for any of this or if I had told anyone. I smiled and told her; “That’s not how it works“. (Who would I tell and why would they listen differently this time to any of the times before?). “Most times you have to be half dead before anyone will act. Your symptoms need to be more severe before anyone will take it seriously. I don’t even know who ordered the MRI I had on Sunday until I left, and found out it was ordered a year ago, by a previous Neurosurgeon. But, I decided to go anyway just so I have peace of mind. I’ve started living with the headaches and just accept it for what it is“. I understood so much from the look on her face and her unspoken words. As she injected the anaesthesia, I looked at her and smiled saying; “I’m looking forward to this sleep.

I thought it best not to tell her that the follow up appointment for the MRI has apparently been moved to next year March! 

It’s heartwarming, especially when you’ve reached a stage where I have on this Hydro journey. I’ve accepted I cannot fix it – a definite mind shift. Also, this was the reason why I felt peaceful and calm going in on Sunday. Unlike so many other times before, I had no expectations, no fear, no anxiety…nothing.

While in recovery, my assigned nurse gave me some further reason to feel validated. The blue streaks in my hair sparked up our conversation (as it does). Chatting about my gastroenterologist, his thorough approach and good nature, I told her that I wish Neurosurgeon’s could have more of a personality, as he clearly does. Even the anaesthetist was more personable. She agreed that Neurosurgeon’s lack that bedside manner, which most patients tend to look for.

As for the effects of all this investigations on me right now, there’s nothing like having a needle stuck continuously into your neck as they harvest a sample of cells to put you into a “bad mood“. My neck hurts, I’ve developed nausea, a headache and just feel Yuck! overall. Thankfully, the lesion found last year has miraculously disappeared! However, some other samples were taken during my procedure. Biopsy results are all pending.

Can I be a bit pessimistic/realistic? With my luck, there’ll be nothing wrong! I don’t see why things would go changing on me now…In my mind, I’ve done all I can possibly do to figure out what’s wrong. But, until then, life carries on…

As for my health issues, I’ve adopted a new saying, “It is what it is”…as the saying goes! (I’d add the sound clip but I don’t want to get sued for copyright infringement!) 😜


  • Kieran A Ginnelly

    November 3, 2020 at 12:48 pm Reply

    Hello Skye, I believe that we may have communicated on line before. I was born with Hydrocephalus at birth due to “Aquaductal Stenosis” and had my first shunt inserted at a few weeks only. I am 59 now and have had many revisions due to various problems down the years. I also have an Intracranial Arachnoid cyst in the third ventricle which was found some 8 years ago which has slightly grown since then and the Neurologists monitor the situation every 6 months and I do have epilepsy. I also have the dizziness symptoms the exact way you describe often just by sitting, standing, lying down or just simply moving my head at times. After many tests and examinations my hospital Consultant Neurologist diagnosed it to be Central Vertigo caused by the Hydrocephalus and the many problems and the many pressure problems and revision and further damage caused by these problems. I also suffered for 14 years with heaving compressed ventricles due to severe over-draining which needed 3 operations and shunt revisions to stop but I am still left with headaches and the marked central vertigo. I now have a programable VP Strata Valve since 2008 which has had to have the pressures raised from 1.0 initially to 2.5 which it is set on now. This has been to stop the considerable horrible over-draining symptoms I kept getting over 14 years previously.. The dizziness was initially thought to be Benign Position Vertigo caused by movement of crystals in the Inner ear but they did tall he examinations and discounted that. I hope the info helps in some way. Contact me if you would like to talk about the various problems and treatments we have both had down the years. It should be very interesting. Kind regards, Kieran

    • Skyewaters

      November 3, 2020 at 8:44 pm Reply

      Hi Kieran. I vaguely remember chatting to you before. 😊 Sorry to hear about the troubles you’re having, I hope things improve with your cyst.
      It’s interesting that you mentioned vertigo, which is most likely the case. Hopefully the MRI results will show something of relevance.
      Thank you for your comment. 💙

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