Welcome to ShuntWhisperer.com. It’s gonna be a bumpy ride.
I started this site after being treated with a VP shunt for an Intracranial Pressure Dysregulation Disorder (ICPDD). For whatever reason, the result of the shunt treatment was nothing like what I expected it to be.
Nothing like what the neurosurgeon said it would be. “Infection”, with a shrug of the shoulders, no big deal, when I asked what my risks would be. Quite possibly what he believed. Not at all what I got.
Imagine brutal HALO free-fall onto a demon’s roller coaster that dropped off the tracks in the middle of a triple loop into a bottomless pit without safety harnesses, and that’s an outline of what I endured for four months after the shunt. And don’t get me wrong, there were some enormous positive outcomes as well, improvements in long term pain and fatigue as pressure on critical areas of my brain was relieved and I began to recover; it’s my opinion that it has kept me alive. But: Holy Acid Trip, Batman, I wish I had been prepared for the beatdown I received so I could have faced it head on, KNOWN it might be coming, instead of being sucker-punched. Sucker Punched, I believe, to everyone’s surprise, including my neurosurgeon, trying to help, frustrated at not knowing the WTF of why the treatment was going sideways.
I was a dentist for 25 years. I performed a lot of complex surgeries, sedations, cut pieces from one part of a patient’s mouth and sewed/screwed/glued it to another. I spent A LOT of time preparing my patients for their post-op experience before I ever laid a scalpel on them. Well, that level of attention didn’t seem to apply here. Turns out that ICPDDs are in their infancy in the practice of medicine, thus the information that could prepare a patient for a Lewis-Carrol-meets-Hunter-S.-Thompson-esque outcome doesn’t exist. Most PCPs don’t know what “Intracranial Hypertension” is, much less how to treat it. Even amongst NeuroDocs (neurosurgeons and neurologists), there is no consensus as to the cause of ICPDDs and how to treat them. There is even a vocal group who denies they exist (I would love to let you guys spend a couple of days in my head…).
I went into the shunt surgery believing I would end up with the blessed relief I had gotten from my diagnostic lumbar puncture. I actually did get a lot of relief from pain, fatigue, cognitive difficulties, and other symptoms ICPDD patient’s struggle with, but I also got the Bonus Symptoms associated with unstable intracranial pressures, Bonus Symptoms that nobody seemed to understand.
The purpose for ShuntWhisperer was initially just to tell that story. I thought it might give somebody else a reference point, a warning, an explanation should they find themselves on the same path. But then I was hit with “bitchslap #2”, sort of a Buyer’s Remorse: it was revealed at my first postop with the Nurse Practiioner that there was essentially zero understanding of what was actually going on in a human skull, no way to measure the oh-so-important ICPs without drilling a hole in my head and inserting a “bolt”: quite literally a bolt with a a pressure transducer in my skull. In an Intensive Care Unit. Then she told me there was no follow-up program for shunt patients, “just come back if you have a problem.
Nothing like treating a problem instead of preventing it. Not to mention the loss of valuable data from a pool of patients that medicine admits to having zero knowledge of/about/how/why that a follow up program, a simple questionnaire might provide.
At that point, the purpose for ShuntWhisperer.com changed. I had become a member of support groups for patients with ICPDDs, and all I saw were patients just like me. Confused, struggling, refusing to give up but without any support. And some who where actually doing well.
After graduating from dental school in 1986, I did an optional residency in a hospital. It was worth 8 years of dental school. Exposed to Medical disciplines including Emergency Medicine and Anesthesiology was priceless, but without a doubt the group I came to admire the most was Internal Medicine. Physicians with intimate knowledge of human physiology who often collaborated on cases where the patient presented with a set of symptoms without a known cause. These docs were brilliant and were not satisfied until they knew exactly what had landed a patient in the hospital, a knowledge used to treat the cause of the patient’s condition, not just the symptoms.
They became my role models.
Now, faced with what appeared to be a terrible lack of understanding of a condition for which I had just had a tube stuck into by brain to drain cerebrospinal fluid into my abdomen, I was literally terrified. I swallowed it down and started paying attention to the particulars of my condition.
As a result, I began to notice patterns of cause and effect; those observations led to theories. Testing of theories. My theories resulted in methods of managing symptoms. That management led to more days of function, fewer days of feeling so horrible I could not get out of bed, watching my life dwindle away one day at a time with no explanation.
Then it happened: Inexplicably, against all odds, my Trina was diagnosed with Intracranial Hypertension.
What are the odds? A married couple with an extremely rare disorder? Outside of a care facility, support group, or other instrument that brings ICPDD patients together, few of us know another person with an ICPDD…much less be married to one. Why? What is the commonality?
I know what it is.
Odd, no physician has ever considered it odd yet. Asked that question: why?
(pssstttt: we both had multiple, severe neck injuries that preceded the onset of symptoms).
At that point, when Trina was diagnosed, it was all bets off. She had watched me go through hell with my shunt. She was scared to death. She had migraine headaches so bad that she couldn’t get out of bed. And then, just then, at that point, when she needed help, my treatment was failing, we’re alone trying to take care of each other….
Our neurosurgeon moves. To another hospital. Another STATE. He said he’d take our records, but it would be about 3 months before he could get us in, to treat my unstable shunt, to treat Trina. And considering it took me 3 months to get a consult appointment with him and another 3 months to get treated, and that other neuros treating ICPDDs were few and far between, it seemed as if there was no choice. To his credit, he did get us in quickly and started making plans, but three months of the psychological effects of a daily migraine that left her bedridden with ice packed around her head, the physical effects of the pressure on the centers of her brain that controlled her mood, memory, body temperature, functional capacity, the literal pressure that in combination with some of the most cruel and discompassionate dismissals of suffering by other so-called “healers”, all came together on one morning in October, when with no warning, no good-bye, no note, nothing, not to mention being totally, completely out of “character” with the bright, beautiful Trina I knew an loved, she put a gun to her head and ended her own suffering.
It’s the day after Christmas. Just recalling that moment still freezes me up. It was so unnecessary. So preventable. She was the person everyone looks for: the soul-mate, the one human being who really gets you. And this disorder took her from me.
So now, the purpose of this site, my mission, my only purpose to keep going, is to help others struggling with these disorders. To challenge doctors with my theories, right or wrong, but to at least get them TALKING TO EACH OTHER. Hoping, praying that something here sparks something in somebody’s head that leads to an advance that wouldn’t otherwise come for 10 years. Not for me; I don’t care if anyone remembers me.
For Trina, to remember her; for those suffering this disorder, in service to God. In one of the creeds of the Knights Templar, the words:
”Non Nobis, Domine, Non Nobis, Sed Nomini Tuo Da Glorium”: Nothing for us, Lord, nothing for us but for the glory of Thy Name.
Members of Support Groups for ICPDDs frequently refer to themselves as warriors, and they are no less. I truly pray that this site becomes a “weapon” in that battle by disseminating information and pushing for change an improvements. Not to demean, not to blame; I can’t imagine the responsibilities of the neurosurgeons and neurologists who, in my altruistic sense, are wrestling with the problems of their patients. I pray for them especially, and suggest that we all do as well. I have the distinction of being a “Rosetta Patient”; a patient with an unknown disorder and the modicum of medical knowledge to observe it, draw conclusions that apply at least to me, but I wager to many others as well. I’ve been accused of “oversimplifying an extremely complex system.” Perhaps that’s the case, but from where I’m sitting, I see that being used as an excuse to do nothing while people suffer.
I only ask that you remember one beautiful woman named Trina, my wife, who was taken by this disease, who I hope to see again someday, and who I hold up as an example of what I hope to help prevent. May God Bless us all; our families and caregivers, our doctors, and may this little nook of the internet prove to be a blessing for others.
The Shunt Whisperer
December 26, 2017