This post is more about the total cost involved with care, treatment, surgery and overall recovery. I would go so far as to say; aside from the financial cost, there’s an impact on ones mental, physical and emotional state as well. And, under the right circumstances, can have the same effect on your relationship with others (in a positive OR, for some, in a negative way).
Sometimes surgery is “easier”
There’s never just one cost associated with it, especially not when there are complications, which add to the extended stay and care required. However, sometimes, it’s a case of going in one day and staying in hospital 2-3 days before being discharged. After being diagnosed (age 29), I had a VP shunt placed in 2007, I recall this being the case. My shunt was placed on a Thursday and discharge that weekend.
Recovery was much better, and faster overall, than any of my subsequent surgeries. However, my return to work was “painful”, as I felt like I needed to relearn everything, and I struggled to cope. I felt “stupid” for lack of a better word. It improved with time.
My insurance covered all costs associated and I had no out-of-pocket expenses.
The unplanned and unforeseen
Fast forward just over 2 years later, intermittent shunt failure and a long fight to be heard, I found a surgeon who would listen and help. (Like de ja vu!). You can read all about that here.
My 1st ETV was initially meant to be a VP shunt revision, which turned out to be:
- Monday – shunt revision (partial replacement of valve).
- Tuesday – total shunt replacement. (From a Medtronic programmable to an Orbis Sigma)
- Wednesday – emergency ETV and removal of shunt.
I don’t remember the exact amount of money my insurance had to cover at the time however, the out-of-pocket expense was something which brought me to tears, and caused many sleepless nights. The surgeon at the time charged 3 times above medical rates! The complications of surgery didn’t help the situation either…
I spent just over a week in ICU before being moved to a private room, where I stayed a few extra days, until my discharge from hospital. Recovery took longer than the first time, which is understandable, given the number of surgeries my brain had to endure, over such a short period of time. (I think it was just over a month).
My most recent surgery
The financial cost of my repeat ETV in May this year, complicated by a brain bleed during surgery and ICP monitoring, required me to be in ICU longer than anticipated. The cost has left me feeling a bit unsettled (not entirely sure why). However, I remain THANKFUL to not have had this bill staring me in the face, and for having private health insurance, to cover it! To be honest, having had 3 major surgeries over the last 6 months, I feel rather guilty for costing them so much money. Not my fault, I know. Also, I’m extremely grateful for a surgeon who listens and would rather not see his patients in pain.
For every time I’ve been told: “You don’t need it” or “You’re paying too much”, I say eat your words!
AU$89 158.52 was the amount billed to the insurance company with an out-of-pocket amount of AU$1 500, payable up front (initially AU$5000, which I did not have but managed to negotiate down at AU$500 each for surgeon, assistant and anaesthetist), TOTAL AU$90 658.52. I also had to pay a refundable AU$1000 up front, in case I needed shunt surgery, while in hospital.
These are the only costs of note I’ll share, the rest are made up of diagnostic imaging and lab tests whilst in ICU.
|INPATIENT SERV PRIVATE WARD
|I.C.U INTENSIVE CARE UNIT
|INPATIENT SERV SHARED WARD
|EACH MINOR ATTENDANCE SUBSEQUENT TO THE FIRST IN
|ENDOSCOPIC VENTRICULOSTOMY FOR TREATMENT OF CEREBROSPINAL
|VENTRICULAR LUMBAR OR CISTERNAL SHUNT DIVERSION INSERTION
|INTRACRANIAL PARENCHYMAL PRESSURE MONITORING DEVICE
|Management of a patient in an Intensive Care Unit
|Central venous pressure, pulmonary arterial
|INTRACRANIAL PRESSURE, MONITORING
Time and recovery
Time between ETV surgeries: 11 years, 5 months, 2 days. This falls outside the expected 5 years for an ETV however, they can fail hours, days or weeks after being done.
Total no. of days in hospital: 14
No. of days in ICU: 10
Recovery time to feeling somewhat “normal”: A few days shy of 6 months.
However, I’m happy to report, the issues I had pre-surgery are a thing of the past. I no longer have:
- Hydro headaches. (Just your regular headaches from time to time)
- Dizziness and/or nausea.
- Vision problems.
After surgery, I had issues with concentration, focussing and moving thoughts along. I couldn’t do my blog posts like I used to, and it felt quite crippling, to say the least. My brain “felt stuck”, for lack of a better explanation.
I wouldn’t say I’m 100% there yet but, all things aside, there’s progress and more positivity, which I choose to focus on right now to keep pushing forward.
I’d like to think the time between this last surgery and my next, will be even longer (at least Dr Tollesson is hopeful of that too). But, as anyone with Hydrocephalus knows, there’s never any guarantees.
As for my medical insurance, this is a MUST HAVE and not a NICE TO HAVE, in my opinion. For anyone who can afford it, I recommend putting it in place. However, I am acutely aware that, not everyone is and the day will come when I too no longer can afford to pay for it. When it comes to this condition, there’s just no guarantees that you won’t be needing further brain surgery. Taking it for granted is something I cannot safely advise either. Also, being reliant on the public health system is something I’ve tried before, without much success or personal comfort. (More on this next time).
I can only speak from my own personal point of view on this, something I realise not everyone will agree with. That’s OK. And, for anyone not in a position to have medical insurance in place, I truly empathise with you. The costs associated with our only treatment options, NOT CURE, are simply ridiculous! Ultimately it’s the cost we pay for our survival.
If this is the cost of just one hospital stay and brain surgery, I shudder to think what the costs are for those who endure 3 or more, within a short space of time.
When will it change..?
People’s feeling towards shunts are a bit divided – some feel they’re life-saving (which technically they are) and great BUT others feel they cause more harm than good or aren’t worth the pain. I say, it’s up to each individual to decide how they feel about it, because we all have our own unique experiences with this foreign device inside our brains and bodies.
To each their own..
Decades since the first shunt was invented, we still don’t have one that will successfully manage this condition, without the need for further brain surgery. I’m aware that some people with Hydrocephalus have been fortunate enough to not need repeat surgery BUT, I’m also painfully aware of those who endure more than their fair share of repeat surgeries due to shunt failure, malfunction or infection.
The cost of brain surgery is far reaching, places enormous stress and strain on individuals and families and yet, this is a condition not many people know about. Why is that? Sharing blogs like this is what raises awareness because you never know when you, or someone you know, could be diagnosed with it.
All you need to ask people in the Hydro community is “How many brain surgeries have you had this year alone?”, then do the math!