SHUNTWHISPERER 2.0 – NEW PERSPECTIVES, NEW THEORIES, BETTER OUTCOMES AND QUALITY OF LIFE

“…My last post was in late 2018 regarding an epiphany I had been given regarding a theory about how a person develops acquired adult IIH. Of course, right at that point, the creaking, weak, bottom fell out from under me.

Again….”

Note:  I need to acknowledge something to a person who reached out to me for help.  This person believed they were developing an infection of their shunt and were desperate.  Due to my own recent challenges, I didn’t open that email until a week later, and then due to some strange glitch, lost it entirely.  To that person, I am deeply sorry, and I pray you were able to avail yourself of the ER in time.  FWIW, I just went through the same problem 7 weeks post-revision.  I post my email contact, ShuntWhisperer@ShuntWhisperer.com to help answer questions if possible, but I am not a neurologist or neurosurgeon, and if anyone should find themselves in and emergency situation (infection of the shunt tract qualifies), get to your physician or ER first, then email me if you like.  FWIW, I am making it a point to check my email every morning at the very least as long as I am able.

 

Greetings to all. 

It’s been a minute, to be sure…more like 4 months.

My last post was in late 2018 regarding an epiphany I had been given regarding a theory about how a person develops acquired adult IIH.  Of course, right at that point, the creaking, weak, bottom fell out from under me.

Again. 

I had to devote what little functional capacity I had to managing this new challenge; making new posts here was just not possible.  February was a very, very, very (etc.) difficult month.  Most days I felt like I a lone person in a dark void above a bottomless abyss, clinging by my fingernails to my spiritual, almost tangible touchstone, Jesus Christ.  I can say with complete certainty He is the only reason I am still here to right this story.

The Lord works in His own way(s).  In my case, Dr. Kenneth Liu of Penn State Neurological Services, the neurosurgeon who saved my life by placing my first VP Shunt two years ago, revised my shunt and repaired the inexplicably persistent hole/CSF leak associated with the craniotomy (surgically created hole in my head).  I referenced this problem in the post “Juice Boxes and My Brain…Who Knew?). I can now say with a weird sense of satisfaction that I now have a metal plate in my head.  A small one, but nonetheless, a metal plate.

Cool.

This surgery resulted in an immediate, marked improvement, but still with instability, though not nearly as severe.  There was still a small but noticeable  CSF leak.  At 5 weeks that last leak suddenly stopped, and it was as if my brain had suddenly been switched back “ON”.  Most notable was that extreme sensitivity to certain triggers, especially barometric pressure, was either drastically reduced or eliminated altogether.   Before the revision surgery, I could not stay at my new retreat in the mountains at a modest 2200’ elevation if the barometer dropped below 940 mb.  I would become bedridden with fatigue, pain, and ‘brain fog’.  I would be forced to leave the mountain for lower elevations, and I began to be able to predict at which turn in the road I would start to feel improvement.  I would stay at a lower altitude for a week, and when I felt better, I returned, only to have the scenario play out over again within the next 7-10 days.  Was this real, or was it some perverse trick of my psyche?  I decided to find out, and with a prescription from Dr. Liu, I bought a home hyperbaric chamber.  Expensive, but it was the only way I knew to answer the question about the effect of barometric pressure on my personal form of this disorder.

I’ll go into more detail about the chamber later; for now I’ll just say I ran a series of controlled experiments.  The results were undeniable: climbing in the hyperbaric chamber and simply increasing the pressure inside to 30mb above local pressure reduced or eliminated by pain and feelings of fatigue.  However, no matter how long I stayed in the chamber, once I exited, those symptoms returned in 1-6 hours depending on local conditions, so there was no doubt that this small change in barometric pressure was enough to drastically affect my well being.

I also noticed something else: when I got out of the chamber, I could feel my shunt flowing.  If you have a shunt, you know what I mean.  More importantly, I noticed that swelling developed along the shunt components under my scalp starting at the craniotomy and eventually proceeding back to behind my ear.   I interpreted this as a CSF leak.  The catheter that connects to the shunt valve is a surgical silicone; human tissue does not adhere to this material.  I also discovered these catheters are further treated make them even more resistant to the adhesion of cells in order to prevent stray bits of protein and brain tissue from adhering to the inside of the catheter and eventually blocking it; this treatment is intended to prolong the life of the shunt.  In my case, bone had failed to fill back in the craniotomy, leaving a path for CSF to leak between the outside of the catheter and the dura and along the catheter and shunt under my scalp.  This resulted in overdrainage of CSF as it was drained not only from inside my brain as intended, but from outside the brain as well.  This caused me to experience intracranial hypotension, and was a truly miserable test of my personal belief that a more appropriate term for this disorder is Intracranial Pressure Dsyregulatory Disorder (ICPDD). 

I took this information to Dr. Liu and ultimately the decision was made to revise the shunt and repair the craniotomy.  Now that this unwanted leak has been stopped I have experienced increasingly stable improvement of my disorder, including greater functional capacity and dramatically reduced ‘fibro’ pain.  I still have challenges from the effects of almost 2 years of wild swings in my ICP, including physical deconditioning.  Spring weather patterns here have been brutal, with at least 4 “bomb-grade” storms (defined as a weather system with at least a 24 mb drop in barometric pressure in 24 hours) in the last month.  Prior to the March surgery, these systems invariably laid me up for at least three days; now, their effects on my disorder are greatly diminished, and seem to be continuing to diminish with each passing day.  Only one recent freak set of back-to-back storms really hit me hard, but in that case there was also a potentially serious late postop complication that I was fortunate to recognize and address before it got out of control.

All this preamble brings us to now.  ShuntWhisperer started as merely a “this is my story, maybe it will help you” type of blog.  Over the course of two years, I’ve learned more as I’ve continued research and experienced new challenges that while very difficult, contributed to a better understanding of my disorder.  The structure of the original site was never intended to present this material of this depth in a coherent and orderly manner.  I never expected it to be more than a few pages, but it has blossomed well beyond that.  Thus I will be  restructuring the site “on the run” as ShuntWhisperer 2.0.  It is intended to be concise, presented in lay language to the degree possible, and accompanied by references to existing research, with a reference section for physicians.  Please don’t expect a visually dazzling site; I simply don’t have the time to post anything but pertinent information.   Also, the original ShuntWhisperer site and its contents will still be available, accessible from the new landing page.

SW 2.0 is still intended to be based on my personal experiences and research.  I can’t claim anything I post applies to any other person with a disorder of altered intracranial pressure, although there are certain immutable laws of human physiology that lead me to suspect that is indeed the case; I just can’t make that claim.  I’m not sponsored, I don’t get paid for this, and don’t care to receive any credit for any good that comes of what I post.  I am doing this in Service to God in an attempt to help others, as well as in memory of my wife Trina.  My contact email is Shuntwhisperer@shuntwhisperer.com for anyone who has a question, feedback, or suggestion. 

As always, prayers to all for comfort, support, and a better quality of life.

 

Wes

The ShuntWhisperer

April 26, 2019

 

Today’s storm and rain has passed; it’s a gorgeous spring day on the mountain, and I’m going to take a break to enjoy it, wishing Trina was with me.

“But ask the animals, and they will teach you, or the birds in the sky, and they will tell you; or speak to the earth, and it will teach you, or let the fish in the sea inform you.  Which of all these does not know that the handoff the Lord has done this?” 

           Job 12: 7-9

 

3 thoughts on “SHUNTWHISPERER 2.0 – NEW PERSPECTIVES, NEW THEORIES, BETTER OUTCOMES AND QUALITY OF LIFE

  1. Sorry for length..a little background..I’m a retired Professor of Nursing with 3 grad degrees in various disciplines, including Counseling Psychology (am also a Licensed Professional Counselor) and among other things, clergy. Disabled/retired early due to near fatal car accident, numerous trauma surgeries, health issues, etc. approx 2 1/2 years ago. However, I am writing in response to your postings….my youngest granddaughter, Liz, 17, who also lives in Va. (Fairfax Station), was dx last year, after having severe migraines for almost a year prior to that, with some type of brain ventricular issue. Initially, a VPN shunt was placed, and for a short time it appeared to be the answer (the neurosurgeons indicated her issues to be congenital, but she’d never previously been dx nor had any health issues of any type). The migraines returned, additional surgery was done, expanding to include another ventricle. She is completing her junior year of HS, has a high GPA of 4.+++ , takes mostly AP courses, wants to study neurology (physician-surgeon-research scientist, which she wanted to do prior to any s/s of any health issue), and has been a varsity field hockey goalie since she was a freshman. She’s the most amazing young woman. Having traveled Europe extensively, and being a voracious reader, she communicates brilliantly and loves a great debate. Her parents are both well educated and she has an older sister. When Liz’s health began to decline, my father became critically ill and I’d had my accident, and was slowly learning to walk again. We live in another state, and are a very close family. I would engage in physical therapy several times and week and in between would provide care for my parents, most notably my dad, whom was still being cared for at home (yet another story, but at that time, in addition, he’d also had surgery to remove a blood clot from his brain.) So, as you can imagine, stress levels were elevated for all of us, and unbeknownst to us, Liz’s s/s of migraines were not, as we came to find, related to stress, but to her undiagnosed congenital brain ventricles narrowings. Liz and her family drove out to visit us, Christmas 2017, knowing my dad’s condition was declining, but everything went well and Liz appeared to have recovered well. April 2018, my dad died, and they flew out for the memorial-thus began her headaches again. They had to return home via car, and she has not flown again. Barometric weather changes appear to greatly affect her, and the intervention appears to be IV’s and a pain block. Caring for my father I was not able to be at her two surgeries, so I do not know the actual diagnosis or procedures utilized, only the basics, and indeed, perhaps that was- and is-sufficient. I have many questions for you, needless to say, but wanted to read all of your posts again, more thoroughly, and to inquire as to if you’ve posted anything more recently. I know our knowledge of the brain is limited and that many of the non-invasive and invasive interventions are perhaps the best we can hope for at this time, but yet I have to wonder….I will leave my info below, and will continue to re- read your posts again. Liz, I believe accessed your site last year, and others, in an attempt to adapt, adjust to her “new” normal. She’s apparently had no real neurological loss, but cognitively, felt differently, so she worked with a cognitive therapist for a short time. At this point, with very limited information, any thoughts or suggestions re Liz? She’s planning on playing collegiate field hockey once she graduates next year, is this ok?? Can she ever fly again? Do you believe stress aggravates or exacerbates CSF/shunt functioning, etc.? + many other questions and thoughts.
    My apologies for the length. Being unexpectedly disabled/retired, I can identify with many of your thoughts. Disbelief is still present, albeit brief at times, for me. I’m sure that your posts have been of great comfort and solace to those in situations similar to yours– for in providing your personal knowledge and experience, you have given an honest, genuine voice to perhaps what others could not, even in whispers, convey to themselves or others. Don’t mean to sound bizarre or corny, but believe it to be true.

    1. Debbie: I’m going to hit some high spots and answers to direct questions. These are opinions based on my experience and research. As far as cognitive/behavioral issues, changing pressures (both high and low) made me very emotionally labile. A short answer about stress is I believe it can trigger IIH in susceptible individuals, and can aggravate effects of altered Intracranial Pressure whether a shunt is present or not. Shunts are very simplistic valves that are intended to compensate for high ICP that for some reason our bodies can no longer manage, but if not properly managed themselves can cause further problems. I’ll even say this: I believe it is very possible that IIH is not a primary disorder, but rather a symptom of an overtaxed endocrine system.

      Your description of your the course of your granddaughter’s disorder sounds very familiar. Please send another email if you would like to discuss it further; it’s involved, beyond the scope of this response, and what I’m building ShuntWhisperer 2.0 around. I believe there may be hope for significant improvement for your granddaughter, but I need more information; I can’t guarantee anything, but I’ll gladly share what I’ve learned living with this condition. Prayers to both of you for comfort and better days.

    2. A couple of quick comments: 1) Intolerance to flying indicates her ICP is too low for the cockpit pressure of a commercial airliner. If she experiences similar headaches symptoms when traveling to a higher altitude/lower local barometric pressure even by car, this confirms this suspicion, especially if symptoms worsen with increases in altitude. Yes, she can very likely fly again once doctors determine how to optimize her ICP with shunt adjustments and medications.

      Last summer I experienced the opposite end of the spectrum. High ICPs were causing headaches, gait disturbances, and other symptoms I associated elevated pressures. Flying to a clinic for treatment at 30,000 ft (cabin pressures ~ 8000 feet) was heaven…until descent to land, when the symptoms/pressure returned. My shunt was adjusted, but the available adjustment was too coarse, leaving me with low ICP – Intracranial Hypotension. Then conditions reversed: lower altitudes led to increased comfort, while higher altitudes now made me ill.

      Changing my shunt to a more finely adjustable shunt as well as attention to very slow healing of the craniotomy for my shunt catheter led to immmediate, dramatic improvement. It has taken 3 months of healing and several shunt adjustments, but now my condition is stabilizing. Conditions that previously incapacitated me either are greatly reduced in effect or no longer affect me. I believe that repairing the craniotomy made the biggest improvement, and trips for adjustments stments are far less frequent.

      I believe there is room for improvement for her based on comparing her story with my experience, and this reply is largely not only for your benefit, but for others reading this, experiencing similar symptoms. I’m going to make it a point to post a “Short and Sweet” version of my thought process before I elaborate further on what I believe caused my disorder to start. Prayers for comfort and better days to all.

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