Communication over the internet can be challenging. Not like talking face to face; it’s easy to misunderstand what is being said, or why somebody is saying it. That said, I want to lead with this: ShuntWhisperer is just my story for about my ICPDD for whatever it’s worth. ICPDDs and their treatment are poorly understood, doctors do the best they can with what is available now. I think I’ve stumbled on to something…interesting… for no other reason than weird coincidence, and I don’t believe in coincidence. Maybe this story it will help somebody, maybe it will spark conversation or thought, but it is absolutely, positively not intended to point fingers or place blame. Despite the challenges of the last year, I would not change anything. I’m just trying to make the most of it for the possible benefit of anyone who finds my experience useful in their journey, both patient and doctor. I try to keep this as light as possible; any humor is just that, never intended to be irreverent. The fact is I’m still here to type this because of the efforts of my neurosurgeon and the Grace of God.
Now, we return to our irregularly unscheduled post:
Is it seriously this “simple”?
So, last year, after I received my shunt, I had a pretty wild ride to put things mildly. Despite all of it, I’m seriously grateful for everything. There seem to be so many unknowns in ICPDDs; all through my experience I’ve tried to learn as much as possible about what is going on in my head and pass that information along. It seems invaluable to me, and I pass it along not for my benefit, but in the hopes that it helps somebody else, and maybe fills in a small part of the overall puzzle.
My Biggest Issue: wild swings in my ICP, with a distinct trend towards overdrainage. The higher the shunt was adjusted, the worse it got. I never felt like I had enough CSF/ICP/MysteryFluid in my head. Ever.
Until November, when thing began to change…
I was using the Whisperer Method to monitor blood flow into my head. The numbers I got were deadly accurate both in how they related to my SOTD (Symptomology Of The Day). The Cerebral Perfusion Coefficient (a figure that gave me a relative idea of how much blood was flowing into my brain along with the static pressure in the blood vessels) numbers stayed within a fixed range. On the low end of the scale I considered myself “underperfused”, that is, not enough blood going into my brain to make enough CSF to keep up with normal losses along with…some other loss of CSF, someplace. I thought it might be through my shunt, but I don’t think so now. On the high side of the scale I felt like my head was going to burst, my shunt felt physically swollen, but perversely, I still felt as if I had no CSF in my head. The “no CSF” feeling is one that I was well accustomed to as it was the same set of overdrainage symptoms for which I was hospitalized in June 2017, 3 months after getting my shunt.
The Deadly Accuracy of the numbers and symptom correlation held up until the end of November, when I noticed numbers and symptoms starting to diverge a little. Then a bit more. This divergence continued up until Christmas day, the last “BAD” day I had according to the old pattern. Suddenly the numbers and symptoms no longer seemed to match. I had no answer.
From Christmas on, suddenly the wild instability rapidly diminished. Extremes of high and low ICPs became closer together. No more apparent swelling of my shunt which is
made largely of rigid materials incapable of expansion. It was as if either a blockage in my shunt had been cleared, or a leak in my head had been closed off. Curiouser (TheWhisperers Unabridged Dictionary), the Cerebral Perfusion Numbers started climbing to new highs, up to 20% higher, without the usual symptoms high ICP symptoms of feeling like my head was going to explode. January into March I actually felt pretty stable, still with bad days, but the best I had felt since getting the shunt. This left me scratching my head, and that’s where I found The Answer To It All.
I’ve never been accused of being the sharpest knife or having a full picnic basket, etc. A little slow at times. So, a few days ago, I’m rubbing my head where the shunt catheter goes into my skull. A slightly larger than dime sized hole created in my skull to allow the catheter to be poked into the hollow area in my brain. No jokes about how easy it should be to hit a hollow area in my brain, please. I’m delicate…
The skin over this hole, a.k.a. “craniotomy”, is slightly indented, normal for a surgical wound. What I noticed is that I no longer noticed it anymore, because it was no longer changing shape. All last year it changed contour with my ICP. Sometimes it was like it was being sucked/pressed into my skull, other times, it was almost as if it was being pushed out under conditions of high ICP. It had become a sign I used to make note of in recording what was going on with my disorder, but now it was no longer changing….
Then, slowly, reality crept up on me. I like to blame the fact that I have a tube in my brain for all these issues of slow comprehension; rather convenient really. Never mind the fact I was slow before I got the shunt, but now I can point to it and say “See? I have a tube in my brain. I’m slow for a reason”, which sounds infinitely better than “I’ve always been slow.”
It was about the hole in my skull; a hole in bone. A dime-ish sized hole was made in my skull, exposing the dura underneath.
The dura is carefully opened, and a 3D guidance technique, a catheter over a needle, sort of like an IV catheter for the brain, was then inserted through the into the immense hollow area in my brain to drain CSF, after which the dura was sutured around the catheter and, my scalp repositioned and stapled shut. Joking aside, I have always appreciated the precision of this particular aspect of the procedure. I had employed guidance techniques generated from 3D scans to place dental implants with extreme precision; the shunt cath placement is another level of precision entirely.
I joke that placing a shunt is not unlike poking a straw into the foil hole of a juice box. No adult can put a straw in a juice box as well as a kid, who with a deft poke can stick that straw through the foil like a kung-fu master, creating an almost perfect hole to match the straw. Perfect enough to suck juice through the straw, but we all know what happens if you squeeze the box with the straw plugged: juice seeps out around the straw, and the ratio of juice-leakage-to-squeeze is directly dependent on the cost of the shirt that is being stained, and inversely dependent on the time since same shirt was laundered.
Doubling factor if dry cleaning is involved (see: Whisperer’s Laws of Life 301).
If I have failed in my wordsmithing to create a clear mental image of this condition in your head, let me invite you to get a juice box, a bag of Capri Sun, a Corona Beer Pouch
(see: Whisperer’s Intellectual Property Item 526), poke the straw through the foil (or get a child to do it for you, except for the Beer Pouch, of course), plug the end of the straw and squeeze the box/bag of juice. See where it leaks – between the foil and the straw, right where the straw goes through the foil. Except in my case, it was not juice, but CSF, leaking around the catheter where it penetrated the dura. There is no magic seal here, and if ICP exceeds the pressure/flow settings of the shunt system, here is a place where CSF can leak.
I’ve been crafting, honing, polishing this for 3 days now, and each time I think about it, I keep wondering how many other shunt patients this might be a factor for, with any type of shunt, VP or LP. The good news is there is a way to mitigate this leakage, or at least reduce the period of time it occurs through a simple surgical method to encourage faster growth of bone into the craniotomy.
As a dentist in my Previous Life, I was intimately familiar with the tissue of Bone. Drilled a lot of holes in bone, grafted a lot of bone, moved bone from one place to another, bone, bone, bone, all day long, bone. But, it paid the bills. I know about bone in the human body, how it reacts to injury, how it heals – or doesn’t. Without the fancy “bone bandage” known as a guided tissue membrane, bone may never fill in a defect completely, and if it does, it takes much longer. A hole in the skull heals from the sides in and from the bottom up, over top of the dura, which by the way makes a dandy guided tissue membrane, at least on the brain side. The issue here is the scalp tissue is a source of soft tissue that fills the hole in the skull well before bone has a chance.
Short story: I didn’t get the fancy bandage for whatever reason. I got a hole “stabbed” (actually carefully incised and then sutured, but for the sake of sensationalism…) in my dura (I wonder now if a child was brought into the operating room to do that part), a catheter inserted into my brain (with great care an precision), the latter hooked up to the shunt valve, and my scalp flopped back into place and stapled as the neurosurgeon asked the charge nurse if he still had time to make the late morning round of golf while the kid that poked the catheter into my brain sucked on a juice box under his surgical mask while sitting on a stool in the corner. In all seriousness, I can’t find a thing that says that shunt craniotomies should be grafted over; maybe they should be.
Bottom Line: March 2017 until I’m guessing November-ish 2017, I had a CSF leak that mucked up the attempts to control my ICP. Ironically, whenever the shunt was “turned up” to a higher pressure setting, it made the problem worse. Nothing sealed the dura to the tube. CSF seeped between the tube and the dura, under the surgical flap, finding its way under my scalp, along the tube and around the shunt body, and likely farther. In surgery the phenomenon is called tunneling, and the leakage of CSF around the catheter created what is known as a pseudomeningocele. Finally in November a stage of healing of the craniotomy was reached that mitigated significant leaks. The timing is right for the size of the hole. However, since to guided tissue membrane/Bone Bandage was used, there is also a good chance the hole isn’t filled with bone, but with a thick scar tissue that may eventually turn to bone. Whatever is in the hole, my head isn’t leaking from an unwanted place anymore.
Google the term “Intracranial Hypotension” (not “hypertension”) . It’s a real thing. Usually caused by an unwanted, unpredicted leak in the dura. I believe this was a large part of the reason for my “wild ride” I went on after my shunt last year. My concern now is who else may be suffering from it or may potentially suffer from it; possibly by posting this, a surgeon may be persuaded to add 10 minutes to the procedure and graft a VP shunt: I don’t know about LP shunts.
This theory also explains a new phenomenon: the return in the last six weeks of my pre-shunt symptoms that were associated with high ICPs, the reason I got the shunt in the first place. Not as bad yet, but getting there. Fibro pain coming back, other bad stuff, BUT: there is a clear silver lining. Regaining proper ICP balance may be as simple as turning my shunt down a notch. As I write this I’m awaiting a CT to check my meninges, and I’ll post the results here.
(edit to add 5/22/18: those symptoms are definitely back. Time to check in with the neurosurgeon.)
The silver lining here is that I’ve gotten this far and have avoided at least one procedure that would likely have made things worse. Early on last August when I was still having overdrainage symptoms despite having a shunt set at 200mm H2O PLUS a 250mm shunt assist, my neurosurgeon graciously offered to revise me to a higher pressure shunt valve. I declined that offer because my personal situation was not amenable to having the surgery at that time, and I believed I could hold on until another option became available. In retrospect, that higher pressure shunt would have likely made me worse. I consulted with other neurosurgeons for their opinions, but I was never satisfied with their explanations based on nothing better than “gut feeling” and the personal records I had kept. Now I believe I have that explanation, and I’m hopeful that a simple pressure adjustment in my shunt will restore some or all of the reduction in fibro pain, stop the return of the exercise intolerance which is again threatening to leave me bedridden for days after engaging in any physical exertion, and the sleep cycle disorders/insomnia which is back. It is also my hope that this story helps somebody else, or sparks a thought process somewhere in the minds of doctors wrestling with a disorder that has so many unknowns attached. I was told by one surgeon I was the “Unicorn” of this disorder (!); if so, at least now I know from whenst my horn grew…
Bottom Line: without a good seal, CSF can and does leak around shunt catheters. Pseudomeningoceles are a known postoperative possibility with shunts, but their frequency of occurrence is controversial. Secret or not, the answer may be a few added minutes to a shunt placement and a few hundred bucks for a bone bandage. The bandage keeps soft tissue from the skin flap out of the craniotomy, encouraging more rapid and predictable bone healing around the shunt catheter. Bone grafting material made from the patient’s own blood (Platelet Rich Fibrin), can be used to further seal the craniotomy before the bandage is placed and everything sewn/stapled shunt. This is just an opinion I toss out there as a Disabled Dentist With a Hole In My Head.
It is my fervent hope that this clicks with ShuntWhisperer fans (both of you), maybe some docs, and that maybe, just maybe, addressing this small issue will make the post treatment course of other ICPDD patients and VP shunt recipients in general better. As always, prayers to all. Questions can now be sent via email to firstname.lastname@example.org, and I am have setting a Twitter Feed specifically for ShuntWhisperer.
The Shunt Whisperer
May 19, 2018
Missing my wife in my life more and more every day: I love you, baby.