Editor’s Note: The following patient story was submitted to us by Daniel S.—an animal lover, sports fan, and former IIH patient.
When you think about shunts, where do you imagine they’re placed?
If you’re not in medicine, you probably assume they go in the brain.
In my case, though, the shunt was placed lower: in my spine.
My neurosurgeon described the lumbar shunt procedure during my consult. The goal is similar to a brain shunt: to relieve excess cerebrospinal fluid (CSF) that builds up in a way your body can’t manage on its own. For a lumbar shunt, that excess fluid is diverted to the abdomen, where the body can reabsorb it. Because the diversion is to an area of the body associated with “P” (for peritoneum), the operation is often referred to as an LP shunt.
He explained the surgery in plain terms, too: the approach involves moving nerves out of the way, displacing muscles from the spine, drilling an opening to place the shunt, and then closing everything back up.
He also gave me a timeline. He said I would feel more like myself within about three months. Remarkably, he was right. My muscle tightness eased around 10-12 weeks after surgery.
The first days after the operation were much harder. The tightness made even basic movements, such getting up to use the restroom or getting back into bed, feel painfully slow and difficult. I needed a cane, and my family stayed with me in the hospital to help me move. When I tried to lay back down, I often had to call the nurse for help managing the pain from the tightness. Eventually, the tightness improved after I was put on a muscle relaxer.
By roughly 8-10 weeks after surgery, I could walk and bend over without discomfort. After that, I still had occasional tightness that sometimes got in the way, but it gradually faded. The last lingering sensation (at least for me) was a feeling in the middle of my rump, like the urge to have a bowel movement when there wasn’t one. Eventually even that disappeared.
I received the lumbar shunt for idiopathic intracranial hypertension, also known as pseudotumor cerebri. In short, my body produced too much CSF, or failed to regulate it properly, so the pressure built up inside my skull. The “pseudotumor” part of the name comes from how closely the condition can mimic a brain tumor, especially through symptoms like severe headaches.
The shunt was ultimately meant to protect my vision. The excess pressure was pushing against my optic nerves, which became swollen. The purpose was to prevent permanent, complete vision loss.
When I woke up from surgery, the headaches and my other non-vision symptoms were gone. In the five years since, they have not returned.
Vision took longer to recover. That’s not surprising when you think about what was happening: my optic nerves had been swollen for a period of time. Over months, I noticed improvement, and by nine months after my shunt, it was determined that the optic nerve swelling had resolved and my vision was no longer blurry.
If I could redo one small part of the experience, it would be this: since they closed the wounds with glue, I should have put on a shirt sooner. I stayed stuck to the bed in the hospital gown, and moving was easier once I was dressed.
I wanted to share my experience, so that others facing this surgery and recovery would have a firsthand account to read. While their experience may of course be different, they will have an idea of some of the possible challenges and the hope of a good outcome, like mine.
