Welcome To The Shunt Whisperer 2.0

Welcome to The Shunt Whisperer.  I’m a 57 year old professional forced into retirement and disability as the result of a sports injury over 10 years ago.   I was treated with a VP shunt in May 2017 as treatment for an Intracranial Pressure Spectrum Disorder (ICPSD).  In my case, it the initial diagnosis was Idiopathic Intracranial Hypertension, the result of a neck injury.  At least that’s when the symptoms that seem to be relieved by the shunt appeared.  This purpose of this site is to tell the story of what having a shunt has been like, insights I’ve had as a shunt patient with medical training, and where I think shunt treatment needs to go.  I want to help others understand their condition better and hopefully live a better quality of life.  Having a hole in your head and a tube in your brain isn’t much help if you can’t get out of bed or engage in activities that bring you satisfaction. 

Nothing herein is intended to be critical.  ICPSDs have only recently been recognized as real, explaining a handful of conditions that have confounded medicine for over 20 years.  The reality is that right now, there are only a handful of specialists, chiefly neurosurgeons and neurologists, at a few centers around the nation, that are willing to step in and treat this condition.

The reality of ICPSD treatment is this:  it is in the early stages.  Methods and devices are evolving to meet the need of an adult population with an ICPSD.  Basically, diagnosis of an ICPSD means too much blood and/or cerebrospinal fluid is being retained in our central nervous system (brain and spinal cord).  Excess fluid leads to excess pressure which can damage the brain directly including the optic nerves/auditory nerves, as well as stress parts of the brain that control our bodies’ functions including blood pressure, body temperature, weight, sleep cycles, and others, and is linked to conditions such as fibromyalgia and dementias.

My experience thus far has been the equivalent of Alice falling down the Rabbit Hole.  I’m told I fall in what is believed to be 20% of patients who develop secondary symptoms after shunting.  The experience has not been without positive results, however, including a significant drop in a severe and debilitating chronic “fibromyalgia” pain, as well as an improvement in my physical function.  Understand that I have been dealing with symptoms that were relieved with the shunt in March 2017 since a neck injury in mid 2007.   There is no doubt the shunt helped me, no doubt it was the best option at the time.  It hasn’t been perfect, but after six months of living with it, I believe I know a few things that can help.

It’s my hope that telling my story helps somebody else be more informed and less surprised/confused by their ICPSD and it’s treatment.  Don’t use this information to make major health decisions without consultation with your physician.  It’s just here to give a little more understanding into this condition and treatment from someone who has and is currently undergoing it.  I have a fear that if I don’t put this information out there, it might not get to somebody who needs it.  It takes a lot of my available energy to do this; as such, it may take a while between additions and updates.

Prayers and Blessings to everyone,

The Shunt Whisperer

October 6, 2017

9 thoughts on “Welcome To The Shunt Whisperer 2.0

  1. Dear shunt whisperer my name is Denice how do I get ahold of you? I’d love to have a discussion with you about all this.

    1. Denice: Boarding a flight to Mayo, just saw your comment – literally. Some peculiarity of WordPress. I will try to send you my contact info if you are still interested; apologies for this delay.

      1. Hello again I had no idea you had responded to my comment, I would love your contact info. Thanks!
        Denice 😊

      2. Hello I am still interested & find your story very interesting. When you get the chance, I know how it is, I’ve been dealing with PTC/iih for 26 yrs, I have a 26 yr old shunt & I agree with a lot the things you talk about .
        Thanks for getting back to me!
        Denice 😊

  2. please.. where are you? I need you.. I almost killed myself last night,, tonight I find you. I find hope. How do I speak with you?
    Rhonda Couwenhoven

  3. i have both an lp and a vp shunt… im all alone. Noone understands it seems.. only you.. im sorry about your wife. 🙁 Please help.. my kids.. grandkids need me..

  4. Your posts are amazing. Helping to explain to family what it is I’m going through. I went undiagnosed for at least 10 years. Finally trying to figure life out going forward. Thanks for spreading awareness and helping us from feeling all alone.

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