Intracranial Pressure Spectrum Disorder: A New Name For An Old Medical Condition

My name is Wes Haddix.   I am a 57 year old dentist, currently medically disabled as a result of a sports injury in 2007.  I was diagnosed with an Intracranial Pressure Spectrum Disorder (my term) in November of 2016 and received a vp shunt in late March of 2017.  A diagnostic lumbar puncture in late February 2017 showed an opening pressure of only 17, but after 30 cc of CSF was drained off, symptoms of pain and fatigue that had plagued me since 2008/2009 almost completely vanished.  My neurosurgeon offered options of a vp shunt in March or a venous stent in late June/mid July (the result of the availability of times for particular procedures in the hospital where my neurosurgeon was practicing.)  Desperate for relief at the time, asked him what the risks involve in shunting were.  He shrugged and said “Infection.”.  Needless to say, infection is not the only concern with a vp shunt.  While there is no doubt I needed some kind of intervention*, the lack of preoperative counseling regarding what I would face after being shunted left me totally unprepared for what was to follow.  As I write this in mid-July of 2017, any modicum of “stability” I have achieved has been the result of what appears to be a process of “intelligent guesswork” at the hands of the discipline of Neurosurgery, with me as the guinea pig because “the brain, intracranial pressure, and cerebrospinal fluid and its flow and function are not well understood” (my neurosurgeon’s word’s to me AFTER I hole in my skull and a tube in my brain).

 

To the extent possible, I don’t want anyone else to go into this process blind as woefully uninformed as I was.  This goal of this website is twofold:  First, offering a resource database for all thing ICPSD by offering information based on my personal experience, research, and if I may be so bold, my opinions as to the currently “unknown” issues that afflict patients with Intracranial Pressure Spectrum Disorder.   Helping others understand how serious this condition is (to this day, no doctor has EVER discussed this with me, but I’ve come to figure it out the hard way), and to advise each person to question everything they are told until they receive an explanation they are comfortable with, and to find another doctor if the one in front of you seems unwilling to answer your questions.  The second goal is to challenge doctors, from PCPs right up to Neurologists and Neurosurgeons to STOP; take the time to listen to us and talk with us, not at us.  We know your time is valuable.  Guess what: so is ours, arguably more so than yours.  If you lose a day, it’s not as big a deal as if a patient working two jobs to pay for their mortgage AND health insurance AND medical bills misses a day.  We have to arrange childcare, draw from Leave and Sick Days at jobs, drive/wait/get home late repeat just to come see you.  If my experience is any indication, ICPSD patients miss a lot of days.  Thus, if the tone here comes across as testy and somewhat irritable, be assured it’s a well earned sentiment and the result of significant self control over the true magnitude of what I’m feeling as a result the loss this condition has caused, and the sense of betrayal at the hands of a medical community that seems to have lost touch with the concepts of compassion and empathy because those qualities don’t have an ICPD Code.  This is not blind criticism; I am truly filled with equal parts disbelief and dismay that in the year 2017 so little seems to be understood about such a crucially important physiology (why????) , and the manner in which decisions regarding the treatment of that physiology are made, and the stone-age crudity of the medical devices intended to regulate such an enormously important system.    Heart patients can monitor their pacemakers with their phones, but even with a catheter in our brains, shunt patients have no method of measuring their intracranial pressures non-invasively, and the current generation of shunts are completely mechanical, with no provisions for real-time feedback to help doctors make better decisions.   At my hospital, there is no follow up program for shunt patients, wasting the potentially valuable feedback from a pool of patients that could potentially improve future treatment.   There has to be a better way, so I’m putting my own skin in the game to help as best I can.

Understand that I am not a physician.  I’m a disabled dentist with a hole in his head and a tube in his brain who happened to have a little extra training in medicine.  As such, don’t take my word over your doctor’s; don’t base your health care decisions solely on what I put in this website.  Some of it comes from my own personal experience, and if I’ve learned one thing in this, it’s that each patient is different.   The attempts I make to explain currently unexplained phenomena of ICSPD are works in progress based on research and Internal Medicine theory, but until they are affirmed in whole or part by proper scientific research, they are just that: theory.  I post these theories in an attempt to spark awareness amongst patients and to prod specialists with a narrow focus to look outside of their own “zone” for possible explanations.  “Idiopathic” does not mean there is no explanation for ICSPD; there is always an explanation for a physical condition; just perhaps it will be discovered tomorrow or next week or next year – or this afternoon.  Then we can do away with the term “idiopathic” and start to do something to treat, and ultimately prevent this condition.

Finally, recognition to groups such as Hydrocephalus.org,  and the Intracranial Hypertension Research Foundation, among others, for their dedication to this cause, and to institutions such as The Barrow Neurological Institute, and The Mayo Clinic  their groundbreaking work in treating ICSPD and developing new, more effective treatments.  It will be the input from these treatment centers – along with the new force of demand from social media – that will drive the development of better shunt systems,  better non-invasive treatment options,  earlier detection, and ultimately prevention of ICSPD.

Odd as it may sound, this is a labor of love.  While I may relate my experience, this is not “My Story”.   I was once a dentist driven to push the boundaries of my profession to better serve my patients.  Denied that profession, I’m using that same drive to now serve those who are facing the same challenges out of service to God and my Saviour Jesus Christ and my fellow brothers and sisters, and especially for my wife Trina, who has been diagnosed with ICSPD and, having watched my struggles with the current generation of shunt systems, desperately wishes to avoid getting one.  Together we’re hoping to find another way not just for her, but for everyone else who has just heard the words “Intracranial Pressure” for the first time.  As I close each post on the Facebook support groups I participate in, Prayers and Blessings to us all.


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