The Johns Hopkins Hydrocephalus and Cerebral Fluid Center continues a 100-year legacy of research and treatment for patients diagnosed with hydrocephalus and cerebrospinal fluid (CSF) disorders. Hear from leaders in the field who are working to advance surgical approaches and improve diagnosis and follow-up, and from the patients who are benefiting from this work.
The legacy of Cushing and Dandy at Hopkins relates to Harvey Cushing's great contribution of establishing the first surgical experimental laboratory in the United States where he trained neurosurgeons and also who explored questions about neurologic diseases. The most important one was with his first pupil and later colleague, Walter Dandy, who studied the flow of CS F. And ultimately, what goes wrong and how to fix it? The hydrocephalus and cerebral fluid Center at Johns Hopkins carries on the tradition of Cushing and Dandy in using the laboratory to explore uh the challenges of uh cerebral spinal fluid disorders and to develop new understanding and new treatments which are directly applicable and available for patient care. The research that we do starts with some stuff that's very basic. So we have studies experimental studies where we put in tracers and and look at the flow of fluid when it's put in different places and how it moves naturally and how it moves under abnormal conditions. We also do research to help the the neurosurgeon regulate that fluid drainage better. Also, there's a lot of uh advances that have to be made in how we uh diagnose and how we follow patients. For example, uh we have uh a project where the normal burr hole that every neurosurgeon makes in a in a patient's head can be used as a window using ultrasound in the clinic as an outpatient to look in and see the brain. So, treatment evaluation and diagnosis are all things that we are working on to make it better for, for, for the patients with hydrocephalus. It's important for hydrocephalus to emerge as a more prominent focus of study because there's still so much we don't know about the condition. It is actually a very complex condition in and of itself. And there are close to a million people in the United States who are living with hydrocephalus who have brain surgery as their only treatment option. From a patient perspective, that's a big burden to live with as most patients need multiple brain surgeries to survive for those patients who are living with normal pressure hydrocephalus. There's still so much unknown about the condition and there's still controversy in the field of the condition. So many seniors who may be experiencing symptoms of normal pressure, hydrocephalus are often misdiagnosed because the symptoms can mimic other conditions like Alzheimer's disease or Parkinson's disease. And this really puts them down a road where they might not receive the proper diagnosis for years. Even I have heard I was having terrible incontinence problems. Um I'd fallen five times. Uh and, and I would, my balance was completely off and I was losing my memory when I went to the neurologist and he checked me out and he saw that I had this tremor and said I had parked at the beginnings of Parkinson's and I, I guess I was a little bit annoyed that if somebody could just do something simple, like a spinal tap, which I know is not simple, but it can be done safely. Why not do that? Instead of putting a person through the agony of thinking that they have a permanent disability like Parkinson's, when this is a condition that could be fixed and healed, I don't know where I would be if I didn't have the surgery when I first uh went to a neurological facility and they wanted to do a uh spinal tap at, at Johns Hopkins to see if I was eligible for a uh shunt. And um I was very, very satisfied with the treatment that I got. He was experiencing balance issues, he was experiencing memory um and speech issues uh before he was diagnosed with a hydrocephalus after the treatment, uh his balance is a lot better. Uh He has not had any falls since the surgery. Uh his memory is cleared up. Um And his speech is improved. There's many neurologists around the country. General practitioners and neurosurgeons that hesitate uh to make the diagnosis of neuro pressure hydrocephalus and, and or to, to treat the patients, we feel that there's as, as few as 20% of the patients that should be even thought to have NPH are ever considered for NPH treatment. Uh And we feel that it is very likely we might be able to help more people. But we also believe that we need the first class evidence, which is a placebo controlled trial to say without subjectivity without bias that this is a physiological effect. The pen trial is the first double blind, randomized controlled trial of shun surgery in patients with idiopathic normal pressure hydrocephalus. So in this study, patients are going to be randomized either to an open setting or a closed setting for the first three months. And the group in which the shunt was closed is going to be opened up for the next 9 to 12 months to see if shunts really improve gate outcomes at that one year mark. As part of P we are collecting CSF from these patients. So we will be comparing the group of patients who improve versus a group of patients who don't improve. Are there biomarkers in CS F that differentiate these groups? Because at the end of the day, what we want to know is who will have a sustained and durable and effective improvement in their gate. At one year, I think that in the next years, the treatment of hydrocephalus is going to be transformed and that we're going to be looking back at our years of surgical treatment with shunting. Uh and knowing that we've made a major step forward to making this disease in a sense, be very well treatable. And in the meantime, we're gonna learn how to treat many other kinds of diseases.
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