I’ve started thinking there’s no point in fighting with the doctors I’ve dealt with (for now anyway).
No matter how convinced I was at the time of seeking help again since 2015 that there was a problem, it’s beside the point right now. Truth be told, after the series of consults that followed, I became very doubtful of myself and what I was feeling. The words “second-guessing myself” wouldn’t quite get the point across but it’s close enough.
There’s a war inside of me every time I say I’m feeling something and the stage where I become genuinely concerned. It’s a struggle to keep all the pretence (for the sake of those around me) and more importantly to not be “crying wolf“. So, needless to say, I won’t do so if I’m not 200% sure.
Anyway, the Neurosurgeon I consulted last with, done a referral for me through to the public system to see a Neurologist “in case there’s something he’s missing“.
This was 5/6 months ago!
With all the other things going on with my body, I haven’t been feeling well in a number of ways and for different reasons. As far as my Hydrocephalus goes, when asked the other day after explaining to a colleague about my struggle with the medical care “So how are you coping?“. My cynical response was (with a smile), “I survive on love, fresh air and lots of faith“. I put it out of my mind for so long that I’ve just about forgotten what I was complaining about.
Then last Friday afternoon, I almost hit my head against a brick wall (figuratively speaking of course) when I got the call to schedule the long awaited appointment for today (Tuesday). Reason being, I haven’t been keeping a journal as I’ve read others advise so many times. But, my saving grace came in the form of realising that my blog is in place as I initially started it with that exact aim in mind.
Word of advice, if your memory is anything like mine (which I’m sure is true for many of you), write it down. Though…read on to find out just why this is important.
Now…there was a bit of hesitation on my part to present said printouts/notes at my consult, so I decided against it and studied what my brain would retain. This is because the Neurologist I was referred to a few years back when I played this same game of going from Neurosurgeon to Neurologist, ended up with the conclusion after I refused further drug trials, “We don’t know what to do for you“. She wanted to trial me on too many different drugs time and time again after putting me on a 3-month course of Amitriptyline, which made me severely depressed. Most importantly, she didn’t even read the notes I had so religiously spent time on taking to help give her a clearer picture.
I suppose my hesitation with seeing a Neurologist is that in my opinion, a surgeon should know immediately if there’s a problem, therefore is better qualified. (This belief is waning…). If he didn’t think so at the time, then maybe there wasn’t a problem…
However, my initial diagnosis was probably made exactly this way too. I went to see a Neurologist who because she felt the need to, had sent me to an Ophthalmologist and requested 1 other Neurologist as well as a Neurosurgeon to give their opinions on my case. None of them was convinced that anything was wrong until they done a Lumbar puncture and found my pressure to be high, which then led to me being shunted.
That Deja vu moment has begun to sink in and I strongly felt like going to the appointment (or not), would be a case of damned if you do…damned if you don’t!
I gave it the benefit of the doubt and ended up going. I tried to keep an open mind and not enter the room with my guard up or more so to be accepting of where the discussion would lead. I had a good examination:
- Checking my vision,
- Holding my hands up in front of me with my eyes closed,
- Walking a straight line – normally at first and then one foot in front of the other,
- My arms/legs/feet reflexes were checked,
- Pushing against his hands with resistance,
- Being stroked on either side of my face, arms, legs and feet repeatedly to ascertain if it felt the same,
- And, to put my heel on my opposite knee and then run it down to my other foot with my eyes closed. This was a bit tricky.
He asked if I felt unwell in general and if my mood was affected. I answered “Yes” to both. “What about your appetite? Any weight loss“. “Yes, in fact, I lost 4kg’s in one week without trying“. He just nodded.
In the end, he was happy with the results and said that he suspected I’m experiencing basilar migraines. He wants to trial me on Rizamelt and Venlafaxine…wait for it…an anti-depressant. Then he said, in conjunction with this, he would like to refer me to a Neuropsychologist! (To which I just smiled – biting my tongue).
Apparently what I had told him, led him to believe “something more is going on and a Gastroenterologist won’t solve my problem. But keep the appointment“. He asked if I had been sleeping well and I told him that I wake up during the night (most nights) at about 2, 3, 4 or 5 and struggle to fall asleep for about 2 hours. My brain just won’t shut down and it’s become quite annoying. He asked if there was anything that is bothering me that could be causing this and I said “No“, confirming where he was headed.
I felt compelled to put things into perspective for him. So, I explained that I had been told last August by my Gynaecologist that I needed an urgent Hysterectomy which was turned down privately. I’ve been waiting on the public system 7 to 8 months without medical care in that regard. Any human body would be starting to feel the effects of that by now and added to it, there’s the lack of care with regards to my Gastrointestinal problems.
His tune changed ever so slightly at this revelation and he went on the defence about how they can only make their diagnosis based on what’s in front of them. I proceeded to tell him that I am also aware that even and MRI can sometimes be inconclusive in showing if an ETV is showing signs of failure especially if it’s covered by a membrane or scar tissue. Knowing where it was going, I eased up and agreed. (Silently reminding myself that I’m dealing with a mere mortal and not God).
I looked him squarely in the eyes and said, “The drugs I would consider and give a go but the psychologist…that’s gonna have to be a NO“. I explained to him that I had been down this road before, so in effect it’s a Deja vu moment and, if he had it in the file in front of him (which resembled an encyclopaedia), then he would know. However, early on he mentioned that he had a “summary of my symptoms and none of it made sense to him“, so I suspect he probably didn’t go that far back. He also didn’t have the latest scan which I had done in October last year and the file wasn’t as updated with notes on the blood tests my GP had ordered not too long ago either. *Sigh!!!*
He ran through the importance of keeping a headache journal and I smiled again. When he was done, I explained to him that with my previous referral, I did that and it wasn’t even looked at by the attending Neurologist. So this time, I made a point of asking, “For who’s benefit is the headache journal?“. He said, “It’s more for your benefit than anyone else’ because it can give you an indication of what your triggers are. Like chocolate, wine, cheese, stress, etc. When you get your headaches and if they are possibly linked to your menstrual cycle and so forth“. This clarified it a bit for me in the sense that I wouldn’t expect a doctor in the future to be overly excited to read the days of my Hydro journey headaches and discomfort.
He’ll be making a point to get a copy of the last MRI and get a comparison done by “their” radiographers with a report drawn up for discussion at their next hospital meeting. I left his room with a suggestion from him to give the meds a try, some acupuncture and keeping the headache journal. No further follow-up required.
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I blog about Hydrocephalus and Selective Mutism to give a voice to the millions of people around the world with this condition and disorder. 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!