Hydrocephalus: What’s the reason why doctors “refuse” to help patients?

Hydrocephalus: What’s the reason why doctors “refuse” to help patients?

I remember a time when things were so simple, medically speaking.  You felt unwell, went to the doctor and they actually helped you.  Illnesses like Cancer, which everyone knows has a slim chance of survival, depending on the stage it’s at (but it’s possible), were/are accepted for the fatal nature of the disease.  Doctors aren’t expected to cure this one so, their best efforts are appreciated for going above and beyond.

As a child, I used to respect doctors and had quite a high regard for them.  I don’t really remember hearing people complain as much about medical care then, as I do now.  There’s almost a feeling of helplessness in the plight of people (living with Hydrocephalus) around the world, myself included.  (I especially see this through my blog).

I’ve been asked the question many times “But why don’t the doctors want to help you?”  Similarly, I’ve been told, “The doctors are scared that they’ll do more harm if they operate on you” as if that justifies their inaction, should cause me to back down or feel differently.  (The opinion of “well-meaning” people – right or wrong, who knows).

I can fully respect the fact that they want to “Do No Harm”.  But, I question the state it leaves patients in and what happens to them/their health, regardless of whether doctors physically help or not.

A condition like Hydrocephalus does not afford the person living with it, the luxury of choice.

Sure, there are people who live for years without surgery but, they still live with the effects of the condition.  Plagued by headaches and ill feeling beyond their control (Believe me when I tell you, it is by no means insignificant).  A time where they have no other choice but to seek help from the very people who refuse to help them.  For me personally, I’d rather not have someone operate on me who has ANY reason for NOT helping me, regardless of what that reason is, OR how skilled they are at brain surgery.

The way I see it, they are probably doing more harm by not doing anything, than they are if they did. Also, it doesn’t take a rocket scientist to figure out, the older you get, the riskier any operation becomes.  So, what about people who are over a certain age?  Do they just discard of them this way?  Leave them to suffer..?  Where is the humanity?  This is something I am very aware of for myself as I get older…

I’m starting to wonder, having been to the Emergency Department one too many times without help and, when you are labelled as “Depressed” after if this is not purely an excuse or a way of deflection on the doctors’ part?

I’ve always taken the stance that no sane person would willingly ask a surgeon to operate on them, much less their brain.  I’ve literally been in this position and whether it was driven by my own inner fear or anxiety, is quite frankly irrespective to me.  I’m a firm believer that one way to survive this condition is through acceptance but more importantly getting to know it intimately.  It’s only once you do this and you know what you’re dealing with, that you can face it with “ammunition” for survival.  It’s no use turning a blind eye or ignoring it.  It’s no use pretending that someone else, with the same condition, is worse off than you and that you are “lucky” because it’s the same condition just your anatomy which differs.

While I don’t know the answer to the question, I’ve come to believe that for every 10 doctors who will refuse to help you, there will at least be one, who will.  Don’t ever give up on yourself and don’t ever give up on finding that one doctor who will give you the care you need.  As for the rest of them, I suppose I can just pray that they see the light and error in their inaction.

15 Comments

  • lizard11366yahoocom

    September 21, 2019 at 1:48 am Reply

    I suspect I know at least one inspiration for this. 🙂

  • Andy K.

    October 5, 2018 at 8:52 pm Reply

    Skyewaters,

    Well said with what you wrote :). I don’t have Hydrocephalus but I really like following you and reading your blogs :).

    • Skyewaters

      October 5, 2018 at 9:01 pm Reply

      Thank you!

      • Andy K.

        October 7, 2018 at 2:41 am Reply

        Your Welcome :).

  • Charity Farnham

    September 6, 2018 at 2:11 am Reply

    I Hydrocephalus since birth i have had 3 shunt placements before my first birthday i almost died from surgery from the last shunt u have this Doctor whose sister died of complications from Hydrocephalus and he thinks what ever happened to her will happen to me the shunt i have now doesn’t work it hasn’t worked in 42 year but it never gave me trouble God healed me from that what do i when that trys to talk me into surgery again

    • Skyewaters

      September 6, 2018 at 5:22 am Reply

      I would say Always be aware of the signs and symptoms and go with your gut feeling. If you’ve been “fine” without surgery all these years, then that’s great.

  • Norma Haggard

    September 4, 2018 at 7:50 pm Reply

    I recently have been denied a second opinion as an option because of my insurance. My neurosurgeon assigned to me hasn’t even met me in the two years I’ve had her. I see her NA. They bounce me around to a neurologist and optometrist. I have a collapsed ventricle. I just want conversation with a neurosurgeon. I am in pain. I have vertigo and nausea. It seems I’m not getting any help until it’s possibly too late. I’m fearful of the damage that is occurring to my brain. So, yes I would agree with you on this.

    • Skyewaters

      September 5, 2018 at 4:13 am Reply

      I know it’s frustrating and can feel like you’re fighting a losing battle but please don’t give up Norma. Your life is too important 💙

      • Anonymous

        August 20, 2019 at 12:00 pm Reply

        What is the deal with the god-like complex of these Nuero-surgeons? Gads! Some obviously need training in empathy. Most neurologists I have seen are oblivious to hydro and have absolutely no idea what they are talking about!!!! Most think the shunt can come out!

        • Skyewaters

          August 20, 2019 at 9:26 pm Reply

          If I stumble across the answer to that one, I’ll let you know. I sometimes think it’s worse dealing with them than it is living with Hydrocephalus!

  • ruttpeter

    September 4, 2018 at 1:36 pm Reply

    Doctor’s will never take research and medical-assisting efforts to the level of finding surges! There are too many people involved in the accompanying work areas. If cures are found, the people involved in production of related “treatment” devices and medications involved in supposed “cure research would loose their jobs and income”—so they say.

    • Skyewaters

      September 5, 2018 at 4:11 am Reply

      Terrible way of looking at it but part of the reality I suppose.

  • Karl Rothko

    September 4, 2018 at 9:59 am Reply

    I have never ever been refused treatment, usually because Ive presented so obviously incredibly sick, and xrays have indicated that treatment is required. Only once was surgery scheduled but then canceled at the very last minute by the Senior Surgeon, who couldnt be sure of the outcome. That was 23 yrs ago. To this day, that decision has never been revisited and nor should it be. It is astonishing that a doctor would refuse treatment to a patient presenting with obvious symptoms, and confirmed by MRI or X-ray. However , you dont mess around with a shunt unless you absolutely have to and are sure of the outcome.

    • Skyewaters

      September 5, 2018 at 4:10 am Reply

      I’m glad you haven’t had that experience Karl. It’s not every doctor who does this and, not every person with Hydrocephalus will be able to relate to this post. However, it’s the ones who do and can who need this issue highlighted.

    • Anonymous

      August 20, 2019 at 12:04 pm Reply

      Thank you, Karl!

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