Hydrocephalus: When do you stop searching?

Hydrocephalus: When do you stop searching?

One clear challenge I’ve experienced personally, and seen others with Hydrocephalus struggle with, is finding a good Neurosurgeon/medical team. We encourage each other to not give up, to keep searching for that one doctor who will listen. It’s not uncommon to feel unheard or be disappointed by the medical care you receive, or (more commonly) lack thereof. It’s tiring and frustrating, to say the least. Also, it’s not always easy to just move from one to the other…

There are so many obstacles which come into play. These are only the tip of the iceberg and will be different for each person: 

  • The Financial burden – each initial/new consultation costs more than a normal follow-up. E.g. (approximate figures) AU$300 to $400 vs $200 for a follow-up (which is still a lot of money). Being diagnosed with cervical spinal stenosis a few weeks back, my GP referred me to a Neurosurgeon, given this is their area of expertise. I opted to consult with the same one I saw a few months ago for my Hydrocephalus, it made sense. Thanks to the Covid-19 situation, I had a $300 (new consult fee due to this being a new issue – ka ching!). Telehealth consult, which lasted all of 5 minutes, for him to tell me to go back to my GP who needs to work harder at figuring out what’s causing my symptoms (intermittent total right side numbness and pain – since subsided). At the end of my rope, I gave it some thought and decided to follow up my repeat endoscopy to investigate the abdominal lesion found last year and my thyroid – repeat blood tests and ultrasound of the nodules previously found. Bloods were fine (with a few exceptions) but the nodules had increased and I was referred to see a Thyroid surgeon. She in turn said it wasn’t cause enough for her to do anything, refused to perform any surgery and referred me to 2 other specialists who might consider it. Feeling deflated, I told her: “I’ve spent so much money on medical consults, I feel like a junkie spending money on drugs.” It’s never ending, impacting my life in more ways than one. In the meantime, I live with constant discomfort and feeling like I’m being choked, while life carries on.
  • Some people might live in towns where the closest surgeon is a few hours’ drive away or in an entirely different city/state/county. 
  • You have other medical conditions, like my “complex” issues, which have gone undiagnosed for so long, (and new ones develop as mentioned above), complicating matters even more. For example, having constant nausea or dizziness could be caused by something else. So, while you try to get help for one thing, you are played like a ping pong ball between specialists all pointing the finger at the other one. In the end, you have no answer to anything and feel as helpless as a turtle on its back. 

Is it any wonder that when you eventually grow tired of kicking and screaming for help, with none forthcoming, that you simply withdraw into your shell? Even more importantly, can anyone blame you for feeling like you’re just going to give up, stay in that shell and not come out ever again? To let nature, take its course and for you to finally be done with all of it…

What’s the point of fighting when none of us are getting out of here alive? 

At this stage, personally, I feel like it’s not worth the effort. (Not to be confused with I’m not worth it because I am). However, I know I’ve given it my all but I’ve grown tired of so many things: 

  • Worrying about where this will all end; (Yes, I know, wasted emotion)
  • Feeling guilty about spending more money on doctors visits and tests that yield no results;
  • The constant pressure it places on my relationships;
  • Having to explain myself to yet another doctor; 
  • More importantly: Feeling like I let myself down because I know I don’t remember things well enough to convey my symptoms in a way that makes sense. I need help for all my issues, not just the one! My brain is a jumbled mess and, my other medical issues aka unsolved mysteries, only add to the list, raising a seemingly big red, “Don’t touch! Place in the too hard basket and move on”, button above my head.  

Consultations leave me feeling like I’m trying to paint a picture of my sordid medical history but, there are so many gaps, leaving the end result looking like a Picasso gone wrong. It makes absolutely no sense to the physician sitting across the table from me because I mention symptoms related to another condition, meaning I don’t get help. I get it, the boxes aren’t all ticked and there may even be some information in there that just messes up their train of thought, derailing any sane prognosis they could possibly make. 

So, it begs the question at the top of this post for which I simply don’t have an answer…

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