Coffee Talk With The Cajun Mamas

From Symptoms to Support: A Talk on Hydrocephalus, Misdiagnosis, and the Push for Safer Treatments

• Chris Logan Media • Season 3 • Episode 23

Share episode

Send us a text

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.

https://cajunmamas.com/

YouTube:
https://www.youtube.com/@CajunMamas

Sara
https://www.facebook.com/lllippylady
https://www.instagram.com/lllippylady/#
https://www.tiktok.com/@lllippylady

Koa
https://www.facebook.com/kgmelancon
https://www.tiktok.com/@koa.melancon
https://www.instagram.com/k_melancon/

SPEAKER_03:

So how is it diagnosed? CT scan.

SPEAKER_01:

CT scan. That's it. They can see it is it. That's how they see it. Yes. Because in fact, with normal pressure hydrocephalus with the older population, um they are a lot of times not diagnosed.

SPEAKER_00:

Welcome to Coffee Talk with the Cajun Mamas. Grab a cup of coffee, settle in, and let's dive into real conversations about life, motherhood, and a little inspiration to brighten your day.

SPEAKER_02:

All right, welcome to Coffee Talk with the Cajun Mama. Today we have a special guest.

SPEAKER_03:

Yes, Miss Laurie's here to tell us about her foundation that she's with, Hydrocephalus Foundation, right? That's the Association. The Association, thank you. Um before we get started that though, um, we want to take a little moment um to selflessly plug our own website in. If you did not know, we have a website, it's called CajunMamas.com. And um, if you're on our YouTube channel right now, you can see some of the uh coffee mugs displayed here for you. We offer, we offer merch like coffee mugs, we offer shirts, we have our course our Virgie sourdough starter you can get there. Um we now have hats. Oh, we should drop them those hats. We should put some of those on the table too.

SPEAKER_02:

Men's caps. Our men have been asking for something from me. See them and we got them now. Yes, okay, we got their hats. So if you don't know what we're talking about, we'll have them in in the next episodes for sure. Or go to the website, go to the website and check them out because they are they fly in a hot commodity.

SPEAKER_03:

Yes, I'm so happy that y'all are enjoying them, guys.

SPEAKER_02:

I love seeing them.

SPEAKER_03:

Um they could go either way, but the men, yeah, they seem to be liking them, so we're happy about that. But yeah, uh, Cajun Mamas, C-A-J-U-N-M-A-M-A-S.com. Y'all will see what we got. Y'all see what we got there, all right? All right, Miss Laurie.

SPEAKER_02:

That's awesome. You want to tell us a little bit about what what what what's your goal today, or what are we talking about today?

SPEAKER_01:

Well, we want to bring awareness to the condition hydrocephalus. And what it is, is it's a condition where you have excess cerebral spinal fluid that accumulates in the brain, and it causes the ventricles inside the brain to swell. You can't live with a swollen brain. So our only course of treatment that we have at this time is brain surgery, and it is most often to implant a device called the shunt. Um, and it goes into the brain and drains the excess fluid into another part of the body, most often the abdomen. Um, hydrocephalus can be acquired at any point in time in life.

SPEAKER_03:

That's what I was gonna ask you. Is it like something you're born with? Yeah. Um yeah, or some babies are affected too. Like it's it doesn't discriminate as far as age goes. It just no, there's absolutely no discrimination.

SPEAKER_01:

It babies can be born with it. Um, particularly, it seems that a lot of twins that are born have problems. Um, and sometimes if they're premature, they'll have brain bleeds and things of that nature. So therefore, um they are very susceptible to hydrocephalus at that point. Um, they can also be, it can just be congenital, you know, in your family. Um, and then children can acquire it, you know, throughout their childhood from infections, tumors, things of this nature. You can also get it from having an accident. Anything that can cause traumatic brain injury can cause hydrocephalus. Oh, yes, so you can be affected at any time point in time in your life. And then there's another type of hydrocephalus, um, which I'm sure you have heard about because Billy Joel is currently suffering from it. And it's called normal pressure hydrocephalus. And people who are 60 years old and higher typically get that, and a lot of times it's not diagnosed because it is uh mistakably uh diagnosed for Parkinson's disease, beginning Alzheimer's, things of that nature because they they these uh symptoms mimic each other. Okay. So that's what Billy Joel is currently um suffering with. Danny Bonaducci um had it. He got with one of our experts, had uh he was actually to a place where he could no longer walk.

SPEAKER_03:

Oh wow. So what are the symptoms? Like uh is it different for each person or there's commonalities? It depends.

SPEAKER_01:

Okay, it depends. Babies, when they're born, typically you can see where they have a larger head circumference. Um, my personal opinion is that way before hydrocephalus was ever given a name, I think that's what waterhead babies were. Okay. Um, but that's just I don't know that for truth. In fact, that's just my assumption. Um, but they can have children can have large heads because as the brain swells, it forces the skull, you know, from the soft spots, it forces the skull to open up and um then it will grow in a in a large shape.

SPEAKER_03:

Um as an adult or even as a child, like not a baby, but uh what are some symptoms that you look for, like if strange things start happening or unexplainable like motor capabilities disruption.

SPEAKER_01:

Babies, children who have it, uh that are early in life, they are very susceptible to learning disabilities and things of that nature after the fact. Beginning with the symptoms would be um for children mainly headaches. So in a child that is non-verbal yet, um you would see a lot of crying, you know, you'd have unexplained crankiness. Unexplained crankiness, you'd have that, sometimes you'll have nausea and vomiting. Um, yes, you'll have, you know, that so you you won't you won't know what's happening. And unfortunately for parents, they don't know what it is that their children are feeling, they don't know how bad and intense that headache can be.

SPEAKER_02:

Yeah, and especially with a baby, you know. I mean, I know a lot of the times I'll credit crying or acting weird or anything to teething. You know, like everything, oh, it must be the teeth, you know. So, I mean, there's really no way of knowing, you know.

SPEAKER_03:

Yeah.

SPEAKER_02:

Correct.

SPEAKER_01:

Now, for older adults who have NPH, like Billy Joel, um, they will have a um sometimes a shuffling of their gait when they walk. They'll have difficulty with that, they'll have difficulty with balance, they'll also have some difficulty with memory. Okay. Um, yes, you can have a lot of that. There's unfortunately, there's also a lot of residual. Um, I myself, I've had five brain surgery, and I am I'm so lucky. I'm so lucky that I've only had five. Oh my gosh. Yes.

SPEAKER_03:

So okay, keep going. Like questions are flooding my brain right now.

SPEAKER_01:

Yes, I know children that have had, I know one young man that's had over a hundred. I know a young lady who is, she's approaching somewhere between probably 80 and 100. Oh my goodness. I just had friends of mine, they're part of my hydrocephalus family, um, come from New Jersey and from California to come and visit in Louisiana and see what we have to offer. Okay. Um, and the girl from California, Lindsay is her name, her daughter Taylor, is 10 years old. She's had 25. Oh my gosh. 25 brain surgeries.

SPEAKER_03:

So it's like a constant work recovery. I mean, you can't get over one surgery before she's got another one.

SPEAKER_01:

Exactly. And in fact, she had a stroke in one of her surgeries, because every time you go into the brain, I mean, you're risking other things that happen. So, yes, and so with a child, um, when they get sick, well, actually it's adults too. When I get sick, if I get a stomach bug, it's like, okay, wait a minute, is this my shunt? Oh, make sure that's a good one. Is it hygiene? Or is this truly just an a little bug I've picked up? Yeah. Um, and so it's a wait and see game. Right. Um, because I I can only speak for myself as an adult, but um, for me, when I'm in danger, I get um brain fog, I guess you call it. Um, because my husband says I start talking and it nothing that I say makes sense. It doesn't make sense. And it doesn't make sense. And so I will say things that don't make sense, I get very nauseated, I will start vomiting. I of course have an incredible headache because headaches are part of daily life with hydro selfless. Yes, yes. So, you know, that's how we know that I'm in trouble, okay, and we have to get me to the hospital. Other people, you know, may have a little bit different symptoms, but those are the common uh symptoms that you have.

SPEAKER_03:

How uh is it diagnosed? CT scan. C T scan. That's it.

SPEAKER_01:

They can see it is it. That's how they see it. Yes, because in fact with normal pressure hydrocephalus with the older population, um they are a lot of times not diagnosed because they don't have a CT scan.

SPEAKER_03:

Because you know, they attribute it to getting odor or you know, uh Alzheimer's or some other type of related thing.

SPEAKER_01:

Exactly, exactly. And that's what you think it is. Wow. And if you don't have the CT scan, then you can't tell that your ventricles are enlarged, and then you have to also have a neurosurgeon that is um familiar that knows about it. Is that just specialists? That would be, yeah. Absolutely. Wow, yes, yes. Now, through the association, um individuals, whether they're newly diagnosed or they've been diagnosed for years, if there's information they want to know about hydrocephalus, we have an absolute plethora of information on the website, the hydroassociation.org. And it gives all kinds of information, it'll give you um facts about hydrocephalus, it can help point you to doctors in your area, it can help you find a walk, what we what we are doing. That's our fundraising event that we do, which is why I'm here today. Okay. So, yeah, so they're they're across you know, so you can find one for sure. Absolutely, absolutely. And if you can't, you pick one that's closer to you and you can actually register virtually. Okay. And so that you can be a part of the community, you can raise the money and help support hydrocephalus. Right. And then you go walk at your own park whenever you want to, and that's how you can contribute. Okay, great. So yeah, that's awesome.

SPEAKER_02:

I was gonna say, is there somewhere if if people just wanted to donate, can they donate absolutely? Absolutely.

SPEAKER_01:

They can go to the hydrocephalus association.org. They can find a walk that's near them, which ours is obviously the only one in the state of Louisiana, and ours is the New Orleans Walk. So if they live here in Louisiana, they can go there, and as soon as they hit that page, it will open up and it has a button on it where you can donate. Okay. You can donate to a team, a particular person, or you can just donate in general.

SPEAKER_03:

And this is all to raise money to help just bring awareness and also to is is there a cure? Is there a research?

SPEAKER_01:

There's not, but we are doing a tremendous amount of research. We have invested, the association has invested, I think, 16.9 million in research, which has then led to like the domino effect of and it's gone up to like 91 million, where other the doctors and stuff that we have have used to do our research have then gone on to get their own grants and things to continue their research. So we are searching for any type of um cure or treatment option that does not involve brain surgery.

SPEAKER_03:

Yeah, I'm seeing this no more hashtag no more BS, no more brain surgery. So that is the really the end goal is to find another way. Absolutely.

SPEAKER_01:

Okay, absolutely, find another way, and that's why we're we're doing what we're doing. Yeah, um, yeah, because we just really have to find a way and find the cure.

SPEAKER_03:

Can you imagine a 10-year-old going through 25 or people like she said, uh oh a hundred brain surgeries? Oh my gosh. And every time, I mean, I just I picture brain, like every time you go in there, the risks involved of brain surgery is tremendous, you know? Yes, it is. I can't imagine. Yes, not knowing, are you gonna come out of this one?

SPEAKER_02:

Don't know. Don't know. Are you gonna come out the same? You know what I mean?

SPEAKER_03:

This yeah, exactly.

SPEAKER_02:

So I think this is awesome. Um I'm so glad. Um, do you want to talk a little bit more about the walk?

SPEAKER_03:

I mean, oh yes, we have the date too, because I don't think we said the date of right, right.

SPEAKER_01:

It is October the 25th. It's in Slidell at Heritage Park. Um, there it are directions and everything on our website so they can find it that way if they don't know where Heritage Park is, or they're welcome. My phone number is all over our our website. So they're welcome to reach out to me. Um, I'd love to talk to anybody who's interested in coming. We have events that are taking place during the walk. So we will have um Serency Coffee Company comes out and does a coffee truck. So we have plenty of coffee to drink. Keep the energy up. Oh, absolutely. Keep that energy up. And he also does um like lemonades and things of that nature for the kids. Um, then we also have snowballs that come out, a snowball truck that comes out and does snowballs. We have our fire truck comes out, the firemen with their little robot. They come out, they actually walk with us. Um, and you know, the kids get to play with the robot and see the fire truck. We have games and things that they play. We do face painting, we have a DJ that plays music the whole time we're in. Is it an all-day thing? No, it's only about four hours.

SPEAKER_03:

Four hours, okay.

SPEAKER_01:

You know, bring the family. We we we come out as registration is taking place, as people are coming in, they can go and partake in all the different events that are you know, the things that are there for them to do. Um, and then we have a little opening ceremony and then we walk. It's a three K walk. Yeah, and we walk around our park, which is beautiful, right on the water. And um, so we walk around there and then afterwards we have snacks and refreshments and and you know, visit together and share stories and October, good choice of a month because the weather's gonna be nice, the weather's gonna be smoldering hot in New Orleans over there. Last year we did September and we were just about dying. We can't be doing that. We can't be doing that.

SPEAKER_02:

Well, October's a good month, so October 25th, right? Yes, October 25th.

SPEAKER_01:

And what's the website again for them to go to? For us, it's um it's the Hydro Sophilist Association. So you type all that out? Yeah, or you can do the shortcut. It's hydro, h-y-d-r-o, as so c dot org. Yes, perfect. And then you can do forward slash New Orleans walk. Oh, okay. And that's how you get to my to our page for Louisiana. Gotcha. So, and there's, you know, our teams have registered on there. There's just a few registered at this point in time, but everybody, you know, it's Louisiana. So people are going to get the word out. Yeah. So right, right. So we're trying to get the word out, um, get people to come and register to donate. Any sponsors that are interested in sponsoring us, we would love to have them. We have um so far we have auctioner hospital. Oh, great. Um, and we have the children's hospital that's doing that. And so we have a couple of sponsors. Obviously, the Cage of Mamas will also be an in-kind sponsor for us. Yes. So, yeah, so we're excited about it. I think we're gonna have a great time. That's wonderful. Great time. Oh, thank you so much for bringing this to the table.

SPEAKER_03:

Yeah, because this is something that I had no clue about. No. You know, it's something you pray and hope that you never have to deal with. But if so, then to know that there is a fleet of people and doctors and research and resources, that's a great, that's always a great thing. Right. Absolutely. And that's you know, uh even more so one day to hopefully not have to have a brain surgery to deal with this condition.

SPEAKER_01:

Because we are the number one cause for brain surgery in this country. Wow. Yes, the number one cause. So we're hoping to eliminate that.

SPEAKER_02:

Yeah, we want to eliminate it. That's right. Okay, well, thank you so so much for coming and reaching out to us um to uh to let us learn more about this and and hopefully get some some other people get aware the awareness around uh hydrocephalus um just to our people. Yeah.

SPEAKER_01:

Well, thank y'all so much for having me. I really, really appreciate y'all working to help us, you know, get the word out there. Absolutely.

SPEAKER_02:

Thank you so much for coming, Miss Laurie.

SPEAKER_01:

Thank you.

SPEAKER_02:

All right, thank y'all so much for our hanging out with us um on this beautiful Wednesday.

SPEAKER_03:

Yeah, and you know what? If you know someone who's been affected by this, um go ahead and leave us a little comment. Well, because I feel like there's just power and strength in numbers, and you never know who you might be able to connect with and share those experiences with, you know, it just makes the load, takes a little bit of the load off, I'm sure. You know, connecting with people.

SPEAKER_01:

Absolutely. And one other thing that I would like to say in that too is that if you have an older adult that you know that's a friend or family member or what have you, and they're experiencing some of those shifting and the memory loss and balance issues and things like that, urge them to get ACT scan. Urge them because it can't hurt. You know, it can't hurt because if it is Parkinson's or something else, well then you know. Yeah, but if it's not, you know, some individuals that have normal pressure hydrocephalus can almost fully recover. They have that brain surgery for the shunt, but right other than that, all of their the symptoms can go away. Yeah, yeah. All right. Thank you. Thank you for that information.

SPEAKER_02:

Yeah, yes. All right, uh, so we're gonna wrap up this episode um by plugging ourselves again. Pageandmamas.com. We have some lovely merch items, um, Louisiana inspired, Page and Mama inspired. We um some of the things that we uh did did is like from uh you know, like their designs from So What? But most of everything that we've done on our website is designed by us. Yes, yes, truly.

SPEAKER_03:

It comes in a little sparkle of an idea, and then we head to Canada and we design and we and we say, Yep, nope, nope, yep, nope.

SPEAKER_02:

That's a different color looks on my screen. No, that looks purple, it's supposed to be red.

SPEAKER_03:

I don't know, but anyway, uh we hope that you like what we're putting out there and we just having fun with it. So y'all just go and check and see what we have at CajunMamas.com and get yourself a little bit of Cajun Mamas uh merch for your house or something. Your love and Cajun Mamas and Cajun culture, yeah, and it makes good gifts too. Oh, yeah. I love when people like you know they buying for like their friends or something when the order comes through and it's like four of the same thing or something. Like, like, oh, they giving that as a gift, like that are they like my friend for her birthday.

SPEAKER_02:

Yeah, uh like they can't they get it and they send it out to their friend for their birthday. And oh I just wish I could get pictures so that I could open it. You know me too. I feel like we're giving it to them like a little, but we didn't, but we did. All right, thank y'all so much for hanging out with us. Uh, and y'all have a wonderful day.

SPEAKER_00:

Thanks for joining us on Coffee Talk with the Cajun Mamas. We hope you enjoyed your cup of coffee and our chat. Don't forget to subscribe and share with your friends. Until next time, keep the coffee brewing and the conversation flowing.