I feel disheartened…almost helpless. Ever since I was diagnosed with Hydrocephalus in 2007, I’ve felt like I’m fighting an uphill battle. It’s not with the condition so much, which has become a part of me and that I accept. But, with the medical professionals, I have to depend on for care. I struggle to understand why some of them have told me I don’t have Hydrocephalus and how the very next one I talk to, confirms its existence without a doubt.
Trying to stop myself from feeling stupid for saying “I had meningitis twice” as some of them have looked at me half amused and without blinking said, “You can’t get hydrocephalus from meningitis“. I cower at this moment like a tortoise withdrawing into its shell. Can you imagine my relief when a Neurosurgeon I consulted with a few months ago told me without a blink of an eye “Well that can certainly cause it“…? He left me speechless for a few seconds while I bathed my mind in the luxury of the words he uttered.
I struggle with knowing that I have reached a level of paranoia that just does not sit too well with me. Every inch of me feels let down…disappointed beyond the point of no return. However, I will not give up on myself because I am that worth it. I just feel disheartened to the core at times.
What is it that I want?
Well, for starters, a doctor who actually knows this condition well enough to know that when I complain about something, that he shouldn’t just dismiss my suspicions at first consult. I want a doctor who is more knowledgeable on the subject than my limited brain. I need to feel safe in the knowledge that I am going to get the best care possible…
I swear, in all these years, there has been only one doctor who took me serious enough to act upon what I was telling him. The rest…well, you can read all about that here Hydrocephalus: Floating Faithfully
A simple rule of thumb going forward will be to ascertain if said doctor Specializes in Hydrocephalus (and specifically in ETV in my case). I don’t just want a generic Neurosurgeon and I sure don’t want to waste my time on a Neuro specialist. In my experience, all they do is trial you on this anti-depressant or that…I am not a Guinea pig. More importantly, I am not mentally unstable…(Yes, I know anti-depressants provide relief in this kind of headaches too but I’ve always felt they were silently thinking that about me…now I do sound a bit loopy – conspiracy theory. LOL!)
Anyway, I also don’t want to be referred to someone else after having the first consult. Going forward, I will do my research online and check for reviews of this person. Another thought is to find out if anyone else knows them and their “work“. So reference checks will be a requirement…
Part of my daily job, is recruitment. So the critical yet simple things that apply when hiring someone for a vacancy seems to make sense to apply in this case. Getting the right person for the job is key to me ’cause they sure as hell don’t come cheap either. I’m looking for a long-term relationship.
If you are lucky enough to have a good Neurosurgeon…hold onto them for dear life. I swear the next one I get…if I could attach myself…you can be assured I will.
If I had superpowers, I would gather all the Neuro specialists and surgeons in one room and disseminate all the knowledge available on Hydrocephalus. Getting them all on the same page just seems like a necessary step. Too bad I don’t have that power within me…However, I know, if I could find someone once before in whom I trusted…then my next safe pair of hands is definitely out there again.
I will find you…because I have faith…
The photo above is the view from my office. I find myself staring out the window at work most days and the question of this post lingers like a song in my head long after it’s ended. I love this view, simply because I love the ocean. Just the sight or smell of it, calms my soul. So while I don’t have answers for myself just yet, I enjoy the view and the benefits to my soul.