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.