Chiari = Shunt? No, not exactly
Julie Carter
But why do so many Chiari patients have shunts? Perhaps they ended up with shunt(s) because their doc just didn’t know what else to do... they hadn’t actually studied Chiari in-depth.
I don’t know how many times I’ve heard this from people in the medical profession, in fact we heard it from a young Neurologist just the other day, (yes, the year 2007) it went something like this, "I understand you have Arnold Chiari Malformation and you are a possible candidate for surgery--so, they’ll just put in a shunt, right?" Our reply: "WHAT?" [Shunt what? She has almost no fluid in her ventricles now.]
We all just stood there and stared at her, how could any Neurologist be so incorrectly educated about our disease? We have been hanging on to the hope that new docs fresh out of medical school will have (at the very least) an educated grasp on this problem we are all facing. After all, it is not as if the MRI is new anymore. We try to give the older docs a break, realizing that some of them trained before the MRI was even invented, but what is the excuse now? Is there not even the most basic training in Chiari/Syringomyelia/Skull-based anomalies? Still? Even today?
Chiari is not Hydrocephalous, although it does look like Chiari can cause Hydrocephalous. The mechanics are logical: block off the flow of fluid and it may pile up in some poor, unsuspecting ventricle…..do a lumbar puncture to check pressure levels, (which can be lethal for Chiari People) get a high pressure reading….hmmm, what to do next? How about a shunt?
How about not rushing into a shunt, and then another and then another and then 7 more. How about taking a look at all possible causes of this high pressure and/or hydrocephalous, and re-think this shunt procedure process? Obviously, there are major emergencies when the shunt is the only tool that will work, but in the case of a Chiari without Hydrocephalous, how could a shunt be the first answer? That is the question.
The dreaded shunt has saved many a life and we are grateful for it when it is used correctly. But when it is used for a Chiari without first ruling out all other causes, the consequences are truly miserable & dangerous.
You ask, what is a shunt? For those who have never experienced the true beauty of the shunt, here it is through our eyes. The first Chiari/shunt patient we ever met was at a Ronald McDonald type house in NY. She was young, 16 maybe, but she looked like a 10-year-old boy, bald, pale, weak. She had had some Chiari surgery back home and something had gone terribly wrong, so they were seeking the advice of specialists.
She had a shunt, you could see the pencil-sized tube through her scalp, it came out of her skull at the top of her head and snaked down the side of her head, behind her ear, down her neck and then we couldn’t see it anymore. Her mother explained that it was run down through her body, into her abdomen where it was draining CSF. She shared her daughter’s symptoms: high pressure, cognitive disturbances, blacking out, nausea, projectile vomiting, severe head pain, & weird heart arrhythmias, exactly the same as Jade’s post-op symptoms. At that point Jade turned and headed for her room, I was right behind her, where we both started sobbing. We were mortified, was this Jade’s future also?
Jade never had to have a shunt, her symptoms were caused by Craniocervical Instability; we were lucky to find docs who specialized in these structural problems and were actively searching for better answers. After her original Chiari decompression her skull began to sink, because of her Ehlers-Danlos Syndrome, causing the pressure in her brain to build. Her doctors put her through every test they could to rule out what was causing this pressure, it was the invasive cervical traction that gave us all the answer. They would pull her skull up and Jade would re-appear, even asked for a guitar, then they would drop her back down, and she would disappear into a pool of misery, begging to be back in the traction; we had our answer.
Jade was lucky to only have to have the one brutal surgery. Listen, the craniocervical fusion process is truly terrifying, (think Franken-Jade) but we were even more afraid of the shunts. We knew way too many Chiari patients whose shunts had failed again and again and again—not even mentioning the scar tissue issue--and we wanted to avoid that sad journey at all costs.