Hydrocephalus: Throwing money at a problem that WON’T go away…

Hydrocephalus: Throwing money at a problem that WON’T go away…

It’s no secret, money makes this world go round. (Some may suggest other things do but…). This week, I’ve been reminded again just how expensive, inconvenient and burdensome this condition is in my life. At my last visit, the Neurosurgeon told me to see an Ophthalmologist and also to get an MRI of my brain and whole spine, when I felt “good again”. To me, this means, the results and findings will be “normal” because it’s being done when I feel fine. So, I’m not expecting any significant findings. I did however, have a moment where I just sat back and thought: “How much is this going to cost and is it really worth it?” (His consult, 3 weeks ago, was AU$300 with a Medicare rebate of AU$113.65).

Guilt, a feeling I have each time I have these diagnostic tests done. Self-imposed, caused by others, combination of both…who knows?

The Ophthalmologist visit, earlier this week, set me back AU$129.95 + Medicare rebate of AU$75.05. The MRI which cost AU$891 was thankfully covered fully by Medicare. (Breathe a huge sigh of relief!). To some it may seem like small change but when you add it all up in a short space of time, it’s quite a handsome sum. (What about those of us who don’t have any means of paying for these tests or consults? If you’re going to say public system, then think again). And, when you’re on a single income, it’s a bit stressful when the appointments seem never ending and your safety net starts disappearing. I feel like I’ve always had some or other check, prod or poke! And, with all the stress of this Coronavirus I don’t anticipate my husband having much luck of finding a job any time soon. Stressful!

The eye test was normal (as expected) however, the Ophthalmologist said he would wait for the findings of the MRI, to review and give his input. I don’t remember much of this consult either but walked away feeling like he too was thinking outside the box. He agreed that there are a percentage of patients who don’t always present with obvious signs, these are sadly overlooked and they get placed in the “too hard basket“.

The MRI took just over an hour with contrast. Honestly, I’ve had this done so many times, it doesn’t affect me. However, this time around, I was left in the machine, a tad bit too long with my own brain and thoughts. (A scary place to be, as I found out!). They fluctuated between memories and thoughts which made me smile and feeling happy, to memories and thoughts which left me feeling tormented by my past. No way out then and no way out today! Yikes!

I requested that all my other scans be uploaded to the patient portal as per the surgeons request, in order for him to do a comparison between pre-diagnosis, ETV, post ETV and today.

The nurse who removed the needle from my arm remarked: “You have a lot of scans!” I just smiled and said to him: “You should be thankful I wasn’t diagnosed at birth ‘cause then you’d have even more to upload!”. We laughed and he agreed…

Then, the admin lady at the front desk asked me when I would see the surgeon next and I said, “When I get sick again…” Exactly when that will be, is anyone’s guess.

Bottom line, I’ve come to a point where I’m truly over it but, in a peaceful way. No more do I expect my husband to know any of this or even remember that I told him about this appointment a few weeks back (and not because he asked). Not even when he kept asking me where I was going. I just smiled and said: “Don’t worry about it“. (Facing it alone, remember). I left the house in a good frame of mind, not stressed about his reaction to yet another expensive appointment which would probably show nothing wrong. I didn’t have to feel anxious over the tone of his voice or replay the change in his body language over and over in my head, adding to my level of guilt. (My over analysing brain at work). I think this new approach may be good for us…time will tell.

When you lower your expectations, you eliminate the ensuing feeling of disappointment. And, sometimes the people in your life, require nothing more than to be on a “need to know” basis.

As mentioned in my previous post, I decided not to put too much expectation on this surgeon either, but have the tests done he requested. In his plan, the next phase is for me to go to the hospital should I become symptomatic again. (For a lumbar puncture or ICP monitoring – to be determined at the time).

I’m on the fence about this…

Now, I realise that may sound dumb to some of you but here’s my thinking. (Anyone who knows my journey or follows this blog will know). This is all de ja vu to the max! How many times do I have to go down this road? I’m tired of it. It’s expensive and feels like all I’m doing, is throwing money at a problem that won’t go away! (Incurable condition requiring brain surgery as the only treatment option…repeatedly). What other choice is there though? The seed of doubt grows in my own mind too as to whether or not any of what I feel is real.

Going loopy is an understatement while trying to remain sane.

Maybe my next option is to move on to medical marijuana to manage my symptoms, since they seem to self-resolve after some time. Now there’s an idea I need to explore💡 

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

6 Comments

  • Pam De Maagd

    March 20, 2020 at 10:12 pm Reply

    I am one of the very fortunate ones. My shunt is 6 months younger than I am and I turn 60 in a few weeks. I have brain damage due to the time it took them to get a diagnosis and insert a shunt. I am a married mom of seven. I was discharged from care by my nsg when I was about 8 years old because I had been stable since the shunt was inserted. When I was about 45 years old I had my first CT scan. I was having minor issues and wanted to rule out any shunt involvement. My PCP requested that I go see a nsg. The nsg looked at my scans and was amazed at how well I function given the amount of matter that is missing/affected. He said there was nothing he could see that he could address/fix. I paid $243 for a handshake.(many years ago) He really wanted to take me on as a patient, just for routine check ups. I said “no thank you.” If/when I ever need a nsg again I will find someone. I am not willing to pay for routine visits that will not benefit me at all.

    • Skyewaters

      March 21, 2020 at 9:55 pm Reply

      Wow! That’s a long time in between. I’ve had a few “handshake payments” myself, in the past. We all have to do what’s best for ourselves and navigating the system is probably the only way you learn.
      Thanks for commenting 💙

  • Philip Mastromonico

    March 20, 2020 at 2:47 pm Reply

    I am only realizing this now, Skye, but you’re from Australia?! Then you don’t have a clue what those of us here in the US endure. NOT ONE CLUE! After every surgery, we wake to a logistical nightmare navigating “the system”. I would have been long dead had it not been for my sister who helps, when I can’t help myself. I have noticed, too, how English speaking nation seem to suck on a social level and follow a level of “survival of the fittest” philosophy. My saving grace is that, unlike you, I have never known life without hydrocephalus. It must be cruel.

    • Skyewaters

      March 21, 2020 at 10:03 pm Reply

      You are right, I have NO clue about the system in the US nor do I claim to. I’m not from Australia either and can only compare my medical experiences from 3 countries where I’ve lived. However, what I see from others experiences (around the world), is probably what gives me insight. It’s a sad state of affairs in many places…
      As for cruel, I can’t really comment aside from saying, this condition is by no means kind. It affects all of us differently and we deal with it as best as we can. Some do have it easier than others but that only means, to me, that empathy goes a long way.

  • Anonymous

    March 20, 2020 at 11:27 am Reply

    hi skye, it’s ALWAYS great to read your blog. your frustrations ARE da ja vu and it NEVER gets better i have found UNLESS!!! you do what i had done. I FIRED THE MEDICAL SYSTEM. i ONLY take alternative products and see healthcare professionals OUTSIDE the medicare loop. but i see charlie teo for my hydro issues WHEN needed, just a bit of a warning though. if you thought it was expensive doing it via the medicare route, you WILL be in for a shock if you do it alternatively. now i first was informed about this somewhere around my 4th or 5th operation, (i’ve had 30 to date, but ONLY 24 for hydro issues). this mother of a child who was 19 or 20 when i first met him, was going for his 120th operation in rpa. he was 6 months old with his first op and litterily spent most of his life in the childrens hospital in camperdown. she said to me at that time, “dusty; you have a wierd medical issue that the doctors know little to NOTHING about. you now have to make a decision and you have ONLY two choices. 1) you can let medicare KILL you for free OR 2) it will cost you a king’s ransom to do it alternatively.” my first op was at 23, i was informed by the drs in rpa that i had the liver of a 60 year old drunk. i met jill at approx 27 or 28 years old about my 4th or 5th op. a few yerars later they told me i’d be requiring dialysis “within the next few years” with the rate my kidneys were failing. you only need to realise how much i HATE needles to know this was too fucked up to deal with. so it was at THAT time i took her advice. my regime of stuff that i do, one IS cbd oil sent out from the usa from one of my brothers – now that was fun to get permission from customs, but it is a lOT easier now. and slowly BUT shirley i’ve weaned myself off ALL the toxic drugs. that includes eliminating a 16 -18 PER DAY panadiene forte habit. you can see why my liver and kidneys were in the state they were in. 😉 now at 57 i am the HEALTHIEST and the most PAIN FREE i have EVER been in my ENTIRE life. i hope i aint boring you with this story, (i am sure i bombarded you with it in the past). however this is just another hydro issue we have to deal with – memory. 😉 any way if you’d like to talk in person for ANY reason, send me an email at dustyral@hotmail.com or call on our landline 02 4578 6084. some helpful things that you can start to do that is free or cheap is simply getting barefoot in the grass, preferably moist/wet grass. grounding/earthing is the BEST way to introduce anti-oxidents into your body. also SHUT off your mobile and Wifi and remove, (better yet REPLACE) , your cordless phones if you have them. NEVER have them in your bedroom when you are trying to sleep. G5 is going to be deadly for us hydro warriors, incedently the frequency of 5G IS a weapon used by police to disperce crowds. they have also used similar technology firing this frequency into forign embassies, which i am sure you remember from the news. but i digress, if you’d like to know more feel free to contact me. and i’m praying and hoping you get great results from your “shit-fight” with the system. 😀

    • Skyewaters

      March 21, 2020 at 9:48 pm Reply

      Hi Dusty
      Alternative treatment options are definitely expensive. I tried it once for something else, unrelated to Hydro, and never went back. Who knows where this road will lead but for now, I’m open to other options. Also,I’ve taken your advice about walking on wet grass though and do this more often now😊
      Your comment didn’t bore me and is interesting to read, food for thought…
      Thank you for commenting💙

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