With my last post about Hydrocephalus being the 3rd party in your marriage, this one seems quite apt to follow. This condition does not play fair. It robs you of so much: time, relationships, money, memory, sanity…so much. But it’s a union where you don’t get to call it quits unless you actually check out of this life.
You’re stuck with it.
These last few years, I’ve been going from doctor to doctor trying to find one who will listen to my call for help. So much of what I know now is hindsight knowledge, but with that comes power. I’ll leverage that. I’ve also been blessed with support from certain members of the Hydro community who have turned on the lightbulb, pushed and challenged me.
Thank you, Kaitlyn, Cindy and Kelleen!
No matter how much you tell yourself after the last disappointment that you’ll never go down that road again, you do. You don’t have a choice…
Some Neurosurgeons have so much ego and god-like complexes going on that they put you off from the onset. You can almost tell from the second you walk into a consult that it’s not going to go anywhere. Yet, you need them to save your life, it’s as simple as that. Changing from one doctor to the next feels like a pattern of abusive relationships where you are ridiculed, questioned, made to feel inadequate, neglected and feeling like you are at the mercy of the other person. Fear and anxiety rise as I pre-empt the same outcome but yet…I go back. I have no choice.
My last GP has left his practice unbeknownst to me. So, I’m back at square one needing to build up a new relationship of trust and not being second-guessed. And, my Neurologist referral (waste of time) is 12 months away…maybe – That’s irrelevant because I’m symptomatic now!
On Friday, a burning pain from my burr hole (top right side of my head), bothered me to no end. I’ve had this a few times before but just ignored it as best I can assuming it’s scar tissue. On Saturday, I woke up with a headache (worse when laying down), which I haven’t had in a long time. l got out of bed, had a hot cross bun and coffee and just felt worse. Looking around the house, the fact that it needed a clean did not escape me, but the energy needed to perform these tasks were now clearly not part of my day’s equation. So, I turned around and walked back to my bedroom where I stayed all day and crashed, appetite gone and energy depleted. The headache hadn’t eased up and lasted throughout the night. My weekend was wasted with an all too familiar episode of being knocked down and slowly having to find my way back to “normal”. Hydro hangover time!
I had a feeling of right sided blockage/numbness over my ear, face and head, loss of appetite, extreme tiredness, nausea and just a general lack of energy.
Since I’m back to square one, I needed to decide who my next GP would be and fast. Thankfully, Kelleen suggested her son’s GP so I decided having one who at least knew something about Hydro, made sense. I wouldn’t have to train, educate or explain the seriousness of the condition too much since she already knew more than most I’ve dealt with. This is positive. I made an appointment with her for today to get a referral to see a new surgeon and all I can say is, her approach and sense of urgency was highly appreciated.
What I appreciated even more, was finally finding my voice and asking for what I want. (Thanks Cindy)
Normally, I make the mistake of expecting to be let down, so I go in with a negative energy. Also, I possibly expect the GP to think a little further than their knowledge allows them to go with this condition which in many cases has been non-existent. I do a practice run in my head of how the consult will go, what I’ll say, how much information I’ll give and what is relevant as opposed to what is not. I sat down and sorted through my scans and reports and pulled out only what I now think is necessary:
- Imaging done post-ETV, (Comparing imaging done post-ETV to now is best as it gives you a better view of possible closure, over time – Thanks to Kaitlyn for sharing this gem of information),
- Report from when I was first diagnosed,
- The surgeons notes from when my shunt was failing, replaced, removed and emergency ETV done, (It shows his line of thinking and some other useful information) and
- The last MRI I had done in August. (Seems a bit fruitless to have this given point #1 above but who knows…)
Anything in between seems irrelevant as do all the other doctors I’ve consulted with and their opinions.
I walked in, introduced myself, told her I have Hydrocephalus and said I needed a referral after running through the symptoms of the past couple of days as she made notes. She was very understanding, agreed that I needed to be seen by a Neurosurgeon and the only thing I had to explain was what an ETV is, which is fine. Her approach and understanding were more than appreciated.
I explained; “It takes a lot of energy to just be sitting here. A head of neurosurgery once told me that the patients he consults with are normally in a coma and I look fine to him because I was sitting and conversing with him, like I am now. They would only act if I were to projectile vomit, something which I’ve never really done when my shunt was failing”. She laughed at this and said, “Right, like you can just do that at will”. I smiled and continued: “I don’t want any reference to, or mention made of, other doctors I’ve seen before as I want to start on a clean slate, with my referral. Sometimes doctors talk to each other and let their own bias cloud the need for attention their patient requires simply because they know each other”. She nodded her head in agreement.“I’ve been dismissed one too many times and have to ride this wave each time, being told there’s nothing wrong. Yet, when the seed was planted regarding intermittent ETV failure, I went back on my blogs (as I blog about Hydrocephalus) and plotted a graph, which to me, was an eye opener”. I explained the theory of this and how even my ICP monitoring was done a month after I was symptomatic and self-resolved by then, she said it made complete sense to her. “It makes me wonder how they can say there’s nothing wrong and how many more times I have to go through these symptoms for someone to take notice and do something about it. Alternatively, I could just have these episodes and one day just not open my eyes because it’s been ignored long enough”. She said, “That’s not right because during those times, your quality of life is affected”
Hallelujah! Someone gets it!
I ended off by saying: “I have a family to take care of and my 3 kids depend on me to be around. I’ve been diagnosed as depressed, treated as if I were loony, forced to take anti-depressants and because I refused, I didn’t get any further help. I’m a professional working to support myself and my family. I’m not depressed or crazy, I write policies for a big IT company for goodness sake which means I have a working brain. I just need help to sort out whatever is going on so I can get on with my life!”
She said, “I actually understand that, you are right”
Surgeon appointment next Tuesday…
My nirvana: A GP who understands my health issues, whom I don’t have to explain every little detail of Hydro to and a Neurosurgeon who follows my care at least once a year. Where I’m not just a number swimming in a sea of people who need care and attention. More importantly, one who is accessible when I need to get to them. Waiting months for an appointment is just not part of the Hydro equation, especially not when the shit hits the fan!
Also, I find going to the emergency at the hospital a complete waste of time, frustrating and soul crushing. That is unless you need strong pain medication, then it’s your go-to for sure. But, the thing that’s probably most exhausting about this condition is the education and convincing you have to do, to get acknowledgement that something is wrong. Don’t misunderstand, I’m all for educating when it comes to this condition but, when you’re feeling unwell and going through possible failure, you don’t have the strength, energy or voice to do so.