Hydrocephalus: A pertinent question…

Hydrocephalus: A pertinent question…

When you keep getting stuck with the wrong one

I’m starting to feel like the woman who attracts the wrong kind of man. The question I’m left with; “What am I doing wrong?

I go into my appointments and, quite honestly, the closer I get to them, the more anxious I become. I already know the outcome before I’ve even set foot into the room. Am I over sharing? Am I a bit too knowledgeable? Am I too timid? Do I come on too strong? Do I become too defensive and maybe cocky? Do I possibly put them off just by opening my mouth?

So many possibilities…and still, I’m no closer to knowing the answer to my question. Honestly, it’s like having to go back to being single and start out dating again – I’d absolutely suck at it! (NO THANK YOU)

Sitting in the waiting room for an appointment with a Neurologist this morning, I felt apprehensive. Having updated my medical notes last night, one thing still stood out for me; something is not right.

I had the first appointment of the day – Off to a good start.

The Neurologist came out and was handed my file, looked at it and passed it off like a piece of toilet paper to the newbie registrar behind him – Not impressed.

I braced myself for what came next and told myself; “It’s OK“, as I waited to be called. I didn’t have any expectations. Besides, his body language put me off as it was only too familiar to me.

The consult went exactly as expected with a whole host of questions, a physical exam and then said registrar left to consult with the Neurologist. They both returned a few minutes later and, despite me telling the Neurologist that; my headaches aren’t always the same (sometimes throbbing behind my right eye, sometimes occipital, sometimes just all over), are definitely not cyclical (yes, he asked), the symptoms (not just headaches) appear every couple of months, are not triggered by anything, I hardly ever see auras or squiggly lines – he insisted they are consistent with migraines…regardless of me saying, I’m able to tell the difference…I also explained to him that, most times, I either wake up early hours of the morning (2 or 3am) with a headache. So, there’s no indication or warning as to when I’ll get them.

I asked him if the list of medications I’ve already taken were similar to what he was recommending, he looked at it and sighed saying; “That’s a long list…not for lack of trying…

When I asked him whether the list of symptoms I’ve documented are consistent with migraines, he looked at my notes and read them one by one. He seemed slightly annoyed. I brushed it aside. There were quite a few he just went; “Yes, yes, yes…” BUT, there were also quite a few he responded with; “I’m not too sure about that”. He then proceeded to prescribe I take Topiramate and Aspro Clear, which will help, especially if I take it “before the headache comes on or I see the aura“. I’m to come back for a follow up in 3 months’ time, failing which, he will recommend I be put on Botox shots. He shook my hand and left the room…

I did not protest.

I started watching Diagnosis on Netflix a few days ago. The doctor at the start of it said something, which resonated with me. She said; “When a patient has a chronic condition and you don’t have a diagnosis, you have no other choice but to ask; What’s causing this?”.

In my case, I have a diagnosis, I just don’t know what’s causing my symptoms. I’m hoping that I can find just one who will have this same kind of mindset. Looking at their patients history closely and against all odds and their own understanding, look for the answers. It does require thinking outside the box and it also means being open to the complexity of each individual. Statistically benchmarking one patient against another somehow seems fruitless when it comes to a condition like Hydrocephalus. These doctors don’t have the physical experience of the condition, they can’t see what’s happening inside and the tests aren’t always conclusive. They have a leg up though in terms of their knowledge, which I won’t take away from them.

But, that’s only half the battle won…they need us as much as we need them!

The Registrar and I shared a look with each other afterwards, and I could see so much written all over his face. I smiled as he started to apologise, validated my feelings of frustration and tried to convince me to trial the medication. I told him, pointing at the chair with a lump in my throat; “That, his whole body language, the fact that he seemingly didn’t listen and wasn’t open to what I was saying…I’m used to all that. I’ve been here so many times before.“. He tried to get me to understand that I needed to see it from their point of view, which I do. They have to manage the pain if the MRI shows that the ETV is patent (open). However, I see these opportunities and grab them where I can. So, I told him;

I understand that you want me to trial the medication and because you’re asking, I’ll give it a go. I also know that I have done this before and yet, I still have no explanation for my symptoms. So, as much as I can understand where you are coming from, I also have a duty of care to myself as the person living with this. If I can give you one word of advice as you’re starting out, and if you don’t mind? Please see your patients as human beings, coming to you for help because they have nowhere else to go. We may have the same condition but, as you’ve so rightly pointed out, I am a complex case. We are not all the same, we have different physiology and sometimes, you need to think outside the box.

I asked him if he thought my right-sided numbness had anything to do with my C5/6 degeneration, he said it wasn’t likely. I replied, “OK, I’ll just ignore the pain and numbness then…I’m sure it’ll sort itself out“.

I’m starting to wonder where this will all end.

Hopefully one day I’ll find a doctor who ticks all the boxes and we’ll have a match made in Heaven. Someone who is willing to put in the hard work and wipe out all the “unsavoury” experiences of those who have been before.

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

10 Comments

  • lizard11366yahoocom

    August 8, 2020 at 6:46 pm Reply

    I’m asking this, not about hydro anymore, but about new health issues I have. It’s frustrating, and I feel like I’m stuck in hell. Two years ago, I was walking several miles 4-5 days a week. Now I can barely move. Blood work shows nothing wrong; rheumy just blows it off on my weight, even though I’ve eaten the same as I did to lose over 100 lbs. Now, 95 is back. :'(

    • Skyewaters

      August 8, 2020 at 9:06 pm Reply

      I’m so sorry you’re going through this and can understand it must be frustrating, I’d feel the same way. Is there someone else you can see for a second opinion or try to figure out what’s changed?
      I hope you get the answers you need. Hang in there💙

      • Liz

        August 9, 2020 at 10:15 pm Reply

        She’s referring me to an ENT, who will probably do a lip biopsy, which is how Sjogren’s is usually dx’ed. I may finally be getting somewhere.

        • Skyewaters

          August 10, 2020 at 2:54 am Reply

          Keeping everything crossed and hoping you get some answers 💙

  • Kerrie Death

    August 7, 2020 at 8:07 am Reply

    I feel your frustration. Ive had the same issue in Australia. Makes you feel like the appointment was and a waist of their time & yours. Then you walk away feeling irrelavant.

    • Skyewaters

      August 7, 2020 at 10:41 am Reply

      Exactly! I’m in Australia too, in Brisbane 😊

  • Lesli Anderson

    August 7, 2020 at 3:46 am Reply

    I enjoy your writing, Celeste. Last year, I began experiencing “migraines” and saw my neurologist’s PA. She’s great, and I’ve told her that. I believe she has a hydro herself, though I’m not sure about that. What she recommended worked wonders for me, so I’ll pass it on to you. My headaches began in the middle of my back with tension and advanced upward into my shoulders, neck, temples and jaw. No medication helped them. She told me to soak for 20 minutes in a warm bath with Epsom salts (the magnesium helps) when I need to and take magnesium glycinate 800 mg daily. That immediately helped. Then I saw a physical therapist who is familiar with neuro patients; she gave me exercises to do daily. I have been doing all this for a year now and I rarely have ANY headaches anymore. If I start to get one, I know what to do and I do it. It actually prevents the headache from developing. Let me know if you’d like more info. Lesli Chinnock Anderson (lesliandersonbooks.com) Hang in there. You’re worth it.

    • Skyewaters

      August 7, 2020 at 10:40 am Reply

      It’s great that you’ve found ways to help with your headaches. I too have epsom salt baths from time to time, as I’ve heard of the benefits.
      Thank you for sharing and for your kind words, it’s truly appreciated 💙

  • Ron Kelleher

    August 6, 2020 at 11:21 am Reply

    Love reading your articles Celeste, your penmanship is extraordinary.The right-side numbness caught my eye. I experience this annoyance every so often. When I asked about it my doctor explained it is because the catheter shifts & sometimes lands on a nerve which gives you this sensation. Eventually it re-shifts & the numbness subsides. I hope this helps. -Ron(Hydropioneer)

    • Skyewaters

      August 6, 2020 at 7:10 pm Reply

      Hi Ron.
      Thank you for your kind words.
      I don’t have a shunt anymore, remember…I wish it were the catheter, at least I’d have a possible explanation. Thanks anyway 💙

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