From Symptoms to Support: A Talk on Hydrocephalus, Misdiagnosis, and the Push for Safer Treatments
Manage episode 509504091 series 3592329
A swollen brain can’t wait—and too many people are told it’s “just getting older.” We sit down with Laurie from the Hydrocephalus Association to unpack what hydrocephalus really is, how it’s diagnosed, and why a simple CT scan can be the difference between decline and recovery. From infants with rapidly growing head size to older adults with shuffling gait, balance problems, and memory slips, we break down the key warning signs and the specific red flags of normal pressure hydrocephalus that often gets mislabeled as Parkinson’s or early Alzheimer’s.
Laurie shares candid stories from the community: children facing dozens of brain surgeries because shunts can fail, adults learning to tell a stomach bug from shunt malfunction, and families navigating brain fog, severe headaches, and urgent hospital runs. We talk about current treatments, why brain surgery remains the standard of care, and the powerful research push toward safer options—captured in the rallying cry: no more brain surgery. You’ll also hear how the Hydrocephalus Association invests in research, connects patients to experts, and equips families with practical resources to find care, track symptoms, and build support.
If you’re near Louisiana, get the details on our New Orleans Walk—date, location, and all the family-friendly activities that turn awareness into action. Can’t be there in person? Register virtually, donate to a team, or sponsor to fuel research and community support. If someone you love is showing gait changes, balance issues, or new memory problems, ask for a CT scan and a referral to a neurosurgeon familiar with NPH. Subscribe, share this episode with a friend, and leave a review to help more families find the answers they need. Your voice can spark the test that changes a life.
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Chapters
1. From Symptoms to Support: A Talk on Hydrocephalus, Misdiagnosis, and the Push for Safer Treatments (00:00:00)
2. What Hydrocephalus Is (00:00:30)
3. Show Intro and Guest Welcome (00:00:49)
4. Quick Merch Plug (00:01:07)
5. Defining Hydrocephalus and Treatment (00:02:40)
6. Who Gets It and Why (00:04:19)
7. Symptoms in Babies and Kids (00:07:01)
8. Adult and NPH Symptoms (00:09:21)
9. Life With a Shunt and Surgeries (00:10:43)
10. Diagnosis and Misdiagnosis (00:12:42)
11. The Association’s Resources (00:13:49)
12. Fundraising Walks and Virtual Options (00:15:36)
13. Research, Costs, and “No More Brain Surgery” (00:17:27)
14. New Orleans Walk Details (00:19:35)
57 episodes