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  • Q&A with Australian Health Practitioners

    Normal pressure hydrocephalus

    Hello, For the past 2 years, my mother (69) has slowly deteriorated with respect to her ability to walk, her gait is wide and she drags her left leg, she has terrible pain down her left hip and leg. She has a diagnosis of normal pressure hydrocephalus by a neurologist for MRI AND LP. She had pressure relieved from her sciatic nerve via an orthopaedic surgeon which did nothing, her walking only worsened. She has seen a pain specialist who fitted a stimulating device externally for 7 days with no effect. She has fibromyalgia, depression and anxiety. She is on Pregabalin and panadol Osteo for pain. She is now using a 4 wheel walker as she has frequent falls, she has headaches, episodes of nausea and also is incontinent which did not respond to medication or Botox injections. Basically, she has been told by the neurologist it's all in your head and we don't know what's wrong so see you in a year, pain specialist put her on and exercise regime and will review in six months and the GP hands are tied. Can you help?
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    Thanks

    Bree Somer

    Social Worker

    Hi - I’m Bree Somer. I'm a qualified, registered Social Worker with extensive experience and specialised training. I provide individual counselling or coaching sessions to ... View Profile

    Hi Sacha,

    This sounds like a very drawn out and frustrating experience for both you and your mother. I'm sorry to hear you are having such a challenging time.

    I appreciate your difficulty as someone I know is currently experiencing a similar situation. So it is from this space that I offer this suggestion.

    Seek further referrals, opinions and tests. Your GP should be willing to support you in this and writing further referrals - if not, seek another GP. 

    My friend has been going back and forward between GP, neurologists, surgeons, and a range of allied health professionals. They were dissatisfied with the first neurologist so have sought out another who came recommended.

    So far this has proved much more successful - not so far as they have answers yet, but in that they feel heard and better supported. They now feel all avenues are being properly investigated.

    As yet they are still trying to pinpoint the diagnosis and have been moving between   hydrocephalus, dementia and parkinsons. Apparently these are difficult to diagnose and are more a matter of diagnosis by exclusion. Which means by default diagnosis will take time. Frustrating for everyone, but particularly the sufferer and carers / loved ones.

    So I'm afraid my suggestions are simply these:

    • seek a second opinion - or third - or fourth, etc until you feel heard and satisfied...
    • seek counselling to talk to someone about how you're feeling and for ongoing support during this process.

    Unfortunately, this may be a drawn out affair.

    And given the chronic nature of this situation and the changes that have already transpired, you are both likely experiencing symptoms of grief and loss - i.e. loss of function, ability, related pain, symptoms and low mood. A very challenging time for you both. 

    I hope you find the answers you seek and wish you both all the best, Bree ♥

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