Hydrocephalus: the stress of not knowing . . .

Last night my dear friend - and fellow #HydroWarrior - Celeste A. Daniels posted a blog to my Facebook group Team Walter and MaryLou titled "Eye trouble and the stress of not knowing . . .". In it, among other things, she talks about how care goes from practically non-existent to where your medical team is using expressions like "This is high risk". This can leave even the most seasoned among us confused and fearful. Up until May of this year (2019), I was going through something very similar having had seven, yes, seven, neurosurgeons in Atlanta tell me they would do surgery to correct the symptoms caused by my hydrocephalus, only to back out at the last minute. On May 3rd, I boarded AMTRAK for what can only be described as a life-changing trip. I had been here for several days and my "adopted sister" Hope made me an appointment with her Neurosurgeon, Dr. Petra Klinge. Initially, Hope and I saw her Physician, Assistant Stephanie. When we explained the symptoms I was experiencing and she didn't want me to leave without seeing Dr. Klinge.

Endoscopic Third Ventriculostomy Surgery

After re-examining me, Dr. Klinge emphatically stated: "Walter, if the hospital in Georgia had sent your films, I would admit you to the hospital today and do the surgery you need". With that, she contacted Rhode Island Hospital to set-up an appointment for an MRI of my head. There was just one problem: my five (5) year-old pacemaker wasn't MRI compatible so that put the brakes on that plan. Instead, they scheduled me for a Computerized Axial Tomography (CT) scan and the results (pictured at right) were shocking . . . even to me. It showed that I function using only a small part of my brain. Most of it is crowded out by my severely enlarged ventricles. In order to correct this - and to relieve vertigo, almost daily headaches, and visual disturbances - she said I was a good candidate for an Endoscopic Third Ventriculostomy.

What she will do is make an incision in my scalp, remove a small plug from my skull, and then insert an endoscope. She will then use the endoscope to burr a small hole - approximately the size of a green pea - on the floor of the third ventricle. This will allow the excess cerebrospinal fluid that is trapped in my skull to drain and be reabsorbed by my body. Although it carries similar risks to other surgical treatments for hydrocephalus, there is one big difference: the ETV is not dependent on parts being inserted during the surgery. It drains using a stoma (pictured at left) that Dr. Klinge will burr on the floor of my ventricle.

Although we won't know my exact prognosis until after the surgery is completed, Dr. Klinge said she expects to see a significant improvement with my balance issue as well a subsiding of the headaches that have occurred on an almost daily basis. I'll take that!