Have you ever had a consult with a specialist for Hydrocephalus and walked away feeling like they simply didn’t listen? Or, maybe you read their report after your consult, and think: “Thats not what I said!”, feeling deflated by the same token.
If you have, you are not alone!
I’ve simply lost my confidence and will to fight this never-ending battle. Yet, I continue as there simply is NO other choice. From the ED doctors who simply got it wrong over the years, to the Neuro Ophthalmologists report from two years ago. I requested a copy for my records and in case I need it for my upcoming appointment. He totally messed up the dates of my surgeries, timeline and details of my Hydro history, amongst other things. Considering the amount of money you have to pay to see them but, more importantly, the seriousness of the condition, the least they can do is get it right!
It’s like giving an account of events, tweaking the details to fill in the blanks but all you achieve in the end, is a version of something that simply deviates too far from the truth, to be taken seriously enough!
I did find this interesting to note:
My dad told me the other day: “You shouldn’t be despondent”. Knowing this is a fight I won’t win with him either, I respectfully steered the conversation in a way that seemed as if I was agreeing with him. The truth of the matter is, I AM despondent and after today, I feel rightfully so.
I question what this fight is for on so many levels. Grrr!!!
Of late, I’ve been having more and more vision loss episodes, since my last post. I’ve managed to secure an appointment with a different Neuro Ophthalmologist, although, this is almost 6 months away! Upon the suggestion of his receptionist, I had a visual fields test done at my local Optometrist last Friday and called her on Sunday to discuss the results. She told me, “there are signs of visual field loss” though she’s, “not sure about this as my normal is not known” to her. Fair enough!
It could be nothing but she’s being cautious and has done a referral back to the Ophthalmologist. I’m hoping it will help secure an earlier appointment. One can only hope. Until then, I ride the crazy train and keep my s*** together…
To say it doesn’t unnerve me would be a lie. I appreciate the fact that this could very possibly be migraine-related or not as big a deal. However, the vision loss/changes scare me and, at the time, takes enormous effort to keep it together. A few days ago, I found myself unable to do so and yet, last night I had the opposite reaction. Had a shower, relaxed and tried to watch some TV but when the actors faces started distorting a bit, resembling a Picasso, I took a deep breath and went to bed.
I also had an MRI of my brain and spine on Monday, results pending. This too was a learning curve. I remembered advice given by a fellow Hydro sister, Kaitlyn. Taking the CD with imaging done a few months post ETV (11 years ago), I asked the MRI technologist to have it uploaded to their system and use it for comparison. She was hesitant and explained that they would use the MRI images they had taken last year but, I insisted. I proceeded to explain that even if there is a degree of closure of my ETV, the imaging done post-op would be the best comparison, as this is my baseline, especially if that closure is happening very slowly. She nodded her understanding and entertained me by taking a copy of the CD. If for whatever reason she doesn’t do the comparison and chooses to ignore me, there’s not much I can do about it.
Medical professionals don’t always respond well to someone who seemingly knows more than them.
I appeased myself by thinking that, if the images are at least uploaded to the system, the Neurosurgeon could access them. In which case, if there is any significant change, surely he would see it. At the very least, it will give me some form of peace of mind. I would have to make an appointment with him and insist that he take a look at it himself. Another wishful situation.
It’s a hard fight to be heard but if you don’t at least try, you might as well give up now…
The details are important to me. The timeline of events are important (in my opinion) but, more importantly, knowing that the details are accurate, leaves me feeling more secure in the care I receive. And, it builds trust…in the hands of people I have no choice, but to entrust this precious brain to!