Hydrocephalus: The waiting game and getting in the way of life!

Hydrocephalus: The waiting game and getting in the way of life!

Hydrocephalus doesn’t ask you if or when it can interrupt your life, it simply does. No matter whether you fail your last year of school because you were symptomatic around exam time and your brain took such a beating that nothing would stick. Or you have your baby brother’s wedding to attend and end up having 3 brain surgeries over 3 days instead. Or you cancel plans you’ve had with friends because you just don’t feel well enough as death extends a more welcoming invitation. The list of moments where Hydrocephalus gets in the way is endless and the lives affected are too many to mention…

Next week Sunday, I fly out to attend a week long training course, another reason why I wanted to get all this tests behind me. And, I do feel reasonably better than I did a few weeks back. I have my reservations about the course itself because of my memory issues, and still need to decide if I do the exam after or not but, I can’t let Hydrocephalus stand in the way of everything in my life, not every time.

It’s been 2 weeks since I saw a new Neurosurgeon and, 2 weeks since I’ve been able to successfully get my referral to an Ophthalmologist from him. He had forgotten to write it up for me when I saw him which caused me to call his rooms 5 times until I finally got it sent through. I thought that was painful but I guess the life lesson of “things could always be worse“, wasn’t far behind. He’s clearly a very busy man…As annoying and frustrating as this has been till now, I do have to calm myself down to a reasonable degree and be understanding of the doctors I’m dealing with. (Yes, you read that right!).

I think what’s put it into perspective for me (slightly), is finally having the referral sent through to one of the local Neuro Ophthalmologist’s in the city and having a “Come again, you said I can have an appointment with him when?” reaction, in the silence of my heart as it sank. “Now, let’s see. I have an appointment next year May or if we had to do it earlier, I could give you 17 November this year. Would that suit?” (My younger son and father’s birthday) That’s 8 whole months away!

If I said the prospect of this waiting period didn’t put me into a slight spin, panic and scramble to find a solution, I’d be lying. I had my moment of “Screw this! I’ll just ignore my symptoms and whatever must be, will be“. I convinced myself that I’m not as bad off as the person diagnosed with Hydrocephalus who suffers from daily headaches, that I am not an emergency case and could possibly just chance another episode from which I would probably recover. Either way, it didn’t really matter!

This is from the new patient letter I received, the reality and perspective of it all:

You can imagine how freaked out I was knowing I would have to wait this long especially since the plan was to have the MRI and Eye check done shortly after my last appointment. Also, given my timeline, the likelihood of me having another episode before November, is high. Thankfully, this letter also recommends 2 other specialists I could consult with if I wasn’t happy with the wait time. I managed to get an appointment with one for next Monday morning, 16 March and my MRI (Head and whole Spine) is next Friday. Apparently it will be an hour long. (Hopefully they have some good music playing this time).

Complex Hx (History). Please compare 2007 MRI. Previous Shunt followed by ETV 2009. Cyclical Headache. Assess patency ETV. Assess evidence chronic low pressure.

No other surgeon has looked at my history this way in asking for the above. So, I’m interested to see if this will yield any different results. The only doubt I have in my mind is the fact that he insisted on having these tests done when I’m feeling “good“. I would have thought that when you’re feeling symptomatic, the signs would be more apparent i.e. making it a good time to run tests.

Oh well, let’s wait and see.

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