Aneurysms, Support & The JNF

Raylene:
Hi there, and thank you for joining us on AV M Alliance, a pediatric stroke podcast for families and friends whose lives have been affected by traumatic brain injury, brain vessel disease, or stroke. The purpose of this podcast is to focus on the kid's side of brain injury with honest talk, news, information and discussion for our community.

Being a parent of a medically complex child is an extremely difficult path to suddenly find yourself on. I'm Raylene Lewis and my son Kyler suffered a hemorrhagic stroke at age 15. Thank you for joining us. Today we're going to be talking about brain aneurysms, and we're gonna visit with Natalie Niekro, who started the Joe Niekro Foundation after her father's sudden passing from a ruptured aneurysm.

We're gonna end with a short discussion finishing up chapter two of our current focus book, suffer Strong by Katherine and Jay Wolf, and in particular discuss how hope is an anchor in our. Today's focus is aneurysms. Now, a brain aneurysm is a weak or thin spot on a blood vessel in the brain that balloons out and fills with blood.

The bulging aneurysm can put pressure on a nerve or surrounding brain tissue, and it can also rupture. Thus spilling blood into the surrounding brain, which is called a hemorrhage. Aneurysms can occur just anywhere in the brain. Many people aren't aware, but a child can also get a brain aneurysm. The condition is just a lot more common.

In adults, scientists have speculated that the formation of pediatric brain aneurysms is different than that of adults. And many doctors agree that pediatric brain aneurysms are not as well understood as brain aneurysms in adults. Thus, the need for more research aneurysms in children are commonly associated with severe head trauma, connective tissue disorder, brain vessel disease or even infection. There is also a tendency to develop aneurysms, which can run in families or occur as part of a genetic disorder. There are six warning signs of brain aneurysms. However, most aneurysms have absolutely no symptoms at all. In fact, for kids, you don't know that you have one until it ruptures.

But the six warning signs associated with brain aneurysms are localized headaches, dilated pupils, blurred vision, pain above or behind the eye, weakness or numbness suddenly on a part of your body. And difficulty speaking, I was not able to find any new general pediatric aneurysm published studies, but I did find a very interesting one on aneurysms.

Recently, a peer-reviewed study was published in one of the American Heart Association's publications that found the use of R A A S inhibitors, and this is a class of blood pressure lowering medication that these inhibitors reduced the risk of an aneurysm rupture by 18. This isn't too surprising given the fact that approximately half of patients with aneurysms have high blood pressure, which can cause the vascular information, inflammation, and increase the risk of aneurysm rupture.

But what was surprising was that the study found that. , even among people who had controlled hypertension, which is high blood pressure, those who took the R A A S inhibitors still had a significantly lower risk of rupture than the individuals who had not used R A A S inhibitors to lower their blood pressure.

So the study points out, in particular the need to use the proper anti-hypertensive medication to achieve normalization of blood pressure in someone who has a family history to brain aneurysms. When I think of brain aneurysms and organizations that help people who've been affected by this condition, The Joan Nero Foundation is one of the big charities that immediately comes to my mind.

I have with me today, Natalie Niekro, who started the Joe Niekro Foundation. Natalie Niekro. Thank you so much for joining us today. Absolutely. 

Natalie:
Thank you for having me. 

Raylene:
And tell me, you are with the Joe Niekro Foundation, correct?

Natalie:
 Correct. 

Raylene:
So tell me about your foundation and how this all came about. 

Natalie:
Sure. Uh, well, in 2006, I lost my father very unexpectedly to a brain aneurysm, and myself and my family were just lost.

We didn't know where to go. We didn't know who to talk to. We didn't have any resources. And so I decided to start a support group here in Phoenix, Arizona, which is where I live. And that one support group ended up, um, turning into a. Larger organization than I ever anticipated, but I'm so thankful that I haven't really quickly, we realized that we all shared the same feelings.

You know, we were all lost. We were, um, very devastated. We didn't know where to turn, and we really just felt like we were so alone. And that was the beginning of. The foundation that I started, I left that meeting and I said, there is a bigger purpose here. I need to do something on a national level that's going to help patients and families through the recovery process.

And that is what I kind of consider the birthing of the foundation. And so today the foundation is, um, I mean I think there's 65 plus support groups nationwide. We have raised and given away over 4 million. To, um, patient support and neurological research and you know, it's just something that I treasure because not only am I keeping my father's legacy alive, but I am also, you know, part of something that is making such a difference in so many people's lives and I am so grateful for that.

Raylene:
So just for fun, tell us who your father was, cuz I know some people don't. 

Natalie:
Sure. So my father was a professional baseball player. He played 22 years in the major leagues. Uh, the majority of that was with the Houston Astros, but, um, I, I grew up, I lived and breathed baseball, and so it's always been a part of my life.

And now my son's kind of following in my, in my dad's footsteps, which is amazing. Um, but my, my father was, yes, he was a professional baseball player, but off the field he was a caring, compassionate.  amazing human being. 

Raylene:
So you're just, you're just continuing his legacy. 

Natalie:
I'm trying. 

Raylene:
So you have these support groups, and you said that they're basically all over the country. When somebody gets this diagnosis of, you know, um, aneurysm stroke, what is your suggestion for, what are the first few steps they need to take? 

Natalie:
Well, I think first and foremost, everybody needs to know. They're not alone. Um, like I said, I felt so lost and my family felt so alone because we were not given any information.

When we left the hospital, I really felt like we were kind of thrown to the wolves. And it wasn't until I got home that all of those feelings of, you know, depression and denial and anger and frustration really started to set in. And that's when I realized that I needed support. And I think so many people.

Position the word support as a negative. , um, as a negative connotation, and I don't want that to be the case. I mean, everybody needs support and I think if, if, if everybody can understand that they're not alone, it's okay for them to feel the way that they're feeling and they don't have to go through this process by themselves.

You know, the recovery journey is not easy, is very, very difficult. But knowing that you can surround yourself with a community of people. You know we're gonna love you are going to understand what you're going through, and then are gonna hold your hand through the process. Makes a world of difference.


Raylene:
Absolutely. How do people find the support that you guys are offering? 

Natalie:
Just on the foundation website, which is Joe Niekrofoundation.org, and there's a whole list of all of the support groups in each state and then the contact email and phone number for the person that they can get in touch with to find out more about the support group meeting and, um, whether you can join in person or you have to do virtual.

I just wanna encourage you to take part in it because it really.  makes such a difference in, in your recovery and just not having to walk this journey alone. 

Raylene:
Are there third party like medical professionals who are part of this support group that help guide and direct people, or is it strictly a volunteer kind of organization?

Natalie:
Wherever the support groups are set up and nine times outta 10 that's in a hospital, we always want a medical professional. Present because they were gonna represent that medical perspective. Um, the people that help facilitate the meetings are volunteers. Usually they are patients or caregivers. But the meetings cannot pla take place until, unless there is a medical professional representing the hospital that is there in the meeting.

And I don't know if I answered your question earlier, just dawned on me that you asked me about, um, some brain aneurysm statistics and I didn't wanna reference that, you know? 6 million people in the country that are walking around with an unruptured aneurysm, and the majority of those people don't even know it.

So it is a very, very common condition. But like I said, it's also a condition that can be treated. Fairly simply, and I say that because you know, now there's endovascular procedures where the patient can go in, they can have their aneurysm treated, and they're out of the hospital within a day or two. It's not always a, a condition where you have to do a craniotomy, meaning you have to go into the, through the skull and treat the aneurysm.

That's so very important. I know a lot of people put things off because they, they're nervous or they're right. They're worried, and so they just, they just kind of, oh, it'll just go away. Well, I can tell you when my father passed away in 2006, the advancements in technology and treatments have exploded.

This industry is. Incredible. I now work for a neurovascular device company, and to see the, the process and the advancements that have taken place just since my father passed away is incredible. And it's continuing to grow and make changes, you know, stroke, uh, let's just talk about stroke in general. So, uh, there's ischemic stroke and hemorrhagic stroke.

You know, stroke used to be a condition where a patient would come into the hospital and they're, you know, they're paralyzed on one side, and the neurologist would say, well, you know, I just hope. , it didn't have too much damage. We'll just see what happens. And they would put the patient in the er and um, a couple days later they would reevaluate them.

But now, you know, you can have a patient that comes in that's, you know, not moving on one side and you can go in, you can suck out the clot, you can treat the bleed, and all of a sudden that patient is walking and talking and, and functioning again. And knowing that we can have that much impact on patients is.


Raylene:
That's amazing. Are there any particular like brain aneurysm facts, like the signs of a potential aneurysm? 

Natalie:
Sure. I mean, a lot of aneurysms are found electively, believe it or not. Um, you know, five years after my dad passed away, I was actually diagnosed with two aneurysms myself, and I had no warning signs and I had no symptoms.

But it is a hereditary condition and unfortunately, it got to me as well. But as far as looking for different signs and symptoms, um, if you ever have what you consider the worst headache of your life,  if that's when you need to get to the ER right away. that's typically in a ruptured case. Oftentimes, like I said, aneurysms are found electively maybe because the patient might be experiencing, you knows, headaches and not, and not significant headaches, but enough to, to make them worried.

You know, but then again, there's some people that have no symptoms whatsoever, like myself, for example. But I always say, We know our bodies better than anybody else does, and if you feel that something just isn't right, there is nothing wrong with going and just getting checked because you just never know.

I mean, this is a condition that can creep upon you and take your life unexpectedly within seconds, but it is a condition that can be. Very easily can be treated and um, you know, I would much rather know that I had one and get it treated than obviously not inhabit, rupture and, you know, suffer significant deficits. That's what we don't want to happen. 

Raylene:
Absolutely. 

Natalie:
There's a saying in the neural world, it's called Blood on the brain, never the same. And it's so true because that's the last thing that you.  in your, in your brain area is any sort of blood, and if you have an aneurysm, that ruptures, obviously that blood is seeping out through your subarachnoid space throughout your brain and that brain and that blood is just causing damage, so you want to get that treated as soon as possible.

Raylene:
And these support groups and also these things that you can sign up for quarterly, these informational talks, they are free to the public, correct? 

Natalie:
Absolutely. And if we can just educate the, the general population about the warning signs, the risk factors, the things to look out for, that's one more life that we might save.

Raylene:
Absolutely. Absolutely. And you've given your website online for people who are like all about Instagram or Facebook. Mm-hmm. . Where should we start for looking for you guys? On social media?

Natalie:
 If you just go into your search bar and type in Joe Niekro Foundation, you will see a whole list of different groups that come up there.

And each one of the groups are, they're private, so it's not nothing that's gonna show up on your, on your feed for everybody else to see. You have to ask to be a part of each one of the groups. That's your way of knowing that this is really a safe space. For you to talk and connect with other people from across the world, like I said, about these particular issues,

Raylene:
And just search Joe Niekro Foundation?

Natalie:
Yes, and I before E, everybody always tells it wrong. Go back to you learned in English way back when I before E, so it's N I E K R O. 

Raylene:
Perfect. Perfect. Well, I just appreciate you so much for coming out and giving us a ton of information, our community. Thanks you so very much for all you are doing, for people who are dealing with, aneurysm diagnosis.

Natalie:
you are, you're so welcome. And before I go, I, I want to commend you on the work that you're doing because like I said, you know, firsthand how this can affect a family. How it can affect a child and knowing that you're providing this resource and this support to other families out there is, is huge for them. Um, for all of those that are listening, that are patients or caregivers and are going through this journey, you know, I just wanna encourage you to stay strong.

Don't walk it alone. You don't have to walk it alone. There's an organization out there for you to help you, and then there's podcasts like this that, that really wanna be there for you so that you don't have to do this by yourself because nobody should have to walk this journey alone. 

Raylene: 
You have a fabulous, fabulous week.

Natalie:
I will. Thank you and happy holidays to everybody.


 At the end of chapter two of our focus book, suffer Strong. Jay mentions that after his wife's stroke, they really gravitated toward the symbol of an anchor in their lives. As Christians, the symbol of an anchor has a lot of meaning because the shape of an anchor includes the shape of a cross.

They refer to a bible. Hebrews six 19. That reads, we have this hope as an anchor for the soul. This was a passage that really stuck with me. Because it made me think about the time when Kyler was going through massive amounts of brain swelling, and we were just basically dealing with significant suffering every day.

It reminded me of what I wrote in my blog, A Cure for Kyler about how I was feeling during this. Personally, the best way that I can describe it is that I was feeling like I was a little boat that was just floating on a wide and vast ocean that had absolutely no horizon. I said that sometimes the waves were rough and I felt like I was just bobbing up and down like a rag doll with no control over anything that was happening.

And other days I would wake up and I would feel like the waters were calm and it almost seemed like there was occasionally a little sun out. But regardless, I always, always, in the back of my mind felt that I was just one storm away, one giant wave away from. Completely capsized and swept to the very bottom of a cold ocean floor where there is no hope of light ever reaching me again.

It was during that time that another AVM mama sent to me. Katherine and Jay's first book, hope Heals, and I embraced the anchor as part of my mental healing process from my own personal experience, I believe that Katherine and Jay are completely right with the whole hope anchors the soul thing. Hope does heal and it's needed for the healing process to.

Without hope, I'm just back on my boat at the mercy of the ocean and the waves, but with hope, I can stay firm and secure despite everything that is happening all around me. Today's quote is by Michelle Obama. She said, you may not always have a comfortable life and you will not always be able to solve all of the world's problems at once.

But don't ever underestimate the importance you can have, because history has shown us that courage can be contagious and hope. Can take on a life of its own. I always like to end our time together with a motivational song recommendation. I don't play the songs because of copyright laws, but there have been many times on this journey where a song has really spoken out to me and helped me with my day.

Today I'm recommending you check out the song Brave by Sarah, bar Morales from her 2013 album. The blessed unrest kept on the inside and no sunlight, sometimes a shadow. But I wanna see you be brave. And as always, if you have questions, have a topic you would like to hear about, or a great song or motivational quote, don't be shy.

Share it in the comments and let us know. And if you liked what you heard today, please go online and rate this podcast. Remember, you're never walking this journey alone. Take care of y'all.