The third in our brain aneurysm awareness month series does not disappoint! Gia Patel a teenage survivor of a brain aneurysm rupture comes on to talk about her experience and how she transformed it into an educational campaign supporting accurate diagnosis of childhood aneurysms. She also gives advice on storytelling, highlighting its importance for your recovery. Make sure to give this episode a listen and watch her documentary at Beyond a Headache Documentary.

Summary

Gia Patel, a brain aneurysm survivor, shares her story of experiencing a brain aneurysm rupture at the age of 14. Initially misdiagnosed as a migraine, Gia's symptoms included a thunderclap headache, neck numbness, sensitivity to light and sound, and vomiting. After multiple hospital visits and tests, including a CT scan and lumbar puncture, the brain bleed was finally confirmed. Gia underwent coiling surgery, but 30% of the aneurysm remained. She then had clipping surgery at Barrow Neurological Institute in Phoenix, Arizona, which successfully resolved the issue. Gia also discusses the memory loss and cognitive issues she experienced after the surgery, as well as ongoing headaches and the challenges of finding effective medications. Gia Patel shares her experience with brain aneurysm and the challenges she faced as a teenager. She discusses the difficulties of managing medications and balancing a social life while dealing with the effects of her condition. Gia also talks about the naming of her dog Ellie and the coincidental connection to Ellie's Law, a law advocating for brain aneurysm research funding. She highlights the importance of storytelling and community in raising awareness and supporting survivors. Gia also mentions her documentary, Beyond a Headache, which aims to educate and spread awareness about brain aneurysms.

Keywords

brain aneurysm, rupture, misdiagnosis, migraine, thunderclap headache, sensitivity to light and sound, vomiting, CT scan, lumbar puncture, coiling surgery, clipping surgery, memory loss, cognitive issues, headaches, medications, brain aneurysm, teenager, medications, social life, Ellie's Law, storytelling, community, documentary, Beyond a Headache

Takeaways

· Brain aneurysm ruptures can be misdiagnosed as migraines, so it's important to advocate for further testing if symptoms persist.

· Symptoms of a brain aneurysm rupture can include a thunderclap headache, neck numbness, sensitivity to light and sound, and vomiting.

· Treatment options for brain aneurysms include coiling and clipping surgeries, but the choice depends on the size and location of the aneurysm.

· After brain surgery and aneurysm ruptures, patients may experience memory loss, cognitive issues, and ongoing headaches.

· Finding effective medications for post-surgery symptoms can be challenging and may require experimentation.

· Managing medications and balancing a social life can be challenging for teenagers with brain aneurysms.

· Storytelling is a powerful tool for raising awareness and connecting with others who have similar experiences.

· Community support is crucial for brain aneurysm survivors to feel validated and understood.

· Gia Patel's documentary, Beyond a Headache, educates and spreads awareness about brain aneurysms.

· Early detection and treatment of brain aneurysms can prevent life-threatening complications.

Sound Bites

"I...

Summary

In this conversation, Tawnie, an aneurysm survivor, shares her experience of misdiagnosis and delayed treatment. She discusses the symptoms she experienced leading up to her aneurysm rupture and the challenges she faced in getting proper medical attention. Tawnie emphasizes the importance of advocating for oneself and the need for better awareness and understanding of aneurysms. The conversation also touches on topics such as the impact of aneurysms on mental health, THC use, and medication management. Tawnie the Neuro Mermaid shares her experience of having a second brain surgery and how it differed from the first. She discusses advocating for her own treatment and choosing the same neurosurgeon for the second surgery. Tawnie also talks about the anxiety and emotional toll of going through multiple surgeries and the importance of self-care and listening to her body. She explains the concept of being a neuro mermaid and how it represents her neurodivergent identity. Tawnie emphasizes the need to rest and prioritize self-care in the recovery process. In this conversation, Tawnie the Neuro Mermaid and Eryn discuss the importance of self-care and managing symptoms after a brain injury. They talk about the need to prioritize rest, set boundaries, and listen to your body. They also touch on the use of THC for pain management and anxiety, emphasizing the importance of individualized approaches to treatment. Overall, the conversation highlights the challenges and triumphs of navigating life after a brain injury and the importance of finding what works best for each individual.

Keywords

aneurysm, misdiagnosis, delayed treatment, symptoms, medical attention, advocacy, awareness, mental health, THC use, medication management, brain surgery, advocacy, anxiety, emotional toll, self-care, neurodivergent, rest, brain injury, self-care, rest, boundaries, THC, pain management, anxiety, individualized treatment

Takeaways

Misdiagnosis and delayed treatment are common challenges for aneurysm survivors, highlighting the need for better awareness and understanding of aneurysms.

Advocating for oneself is crucial in getting proper medical attention and treatment.

Aneurysms can have a significant impact on mental health, and it is important to address emotional and psychological well-being during the recovery process.

The use of THC and medication management are topics that can be explored in relation to aneurysm recovery and symptom management. Advocating for your own treatment and choosing the right healthcare provider is crucial in the recovery process.

Going through multiple brain surgeries can cause anxiety and emotional stress, but it's important to prioritize self-care and listen to your body.

Being neurodivergent and having a brain injury can heighten emotions and anxiety.

Resting and taking care of yourself is essential for recovery, even if it means adjusting your daily routine and expectations. Prioritize rest and self-care to manage symptoms after a brain injury.

Set boundaries and listen to your body's needs.

Explore different treatment options, such as THC, for pain management and anxiety.

Find what works best for you and don't be afraid to advocate for your own health.

Sound Bites

"I was telling people that I felt like I was dying and something wasn't right. And people weren't listening to me."

"Women have such a high threshold, you know, we're built to have children. So yeah, it's supposed to be the worst pain ever, but I think in aneurysm might be worse."

"I was like, I'm in excruciating pain, yet no one can help me. And then when you're like, I mean, at one point, I begged them to put the shunt in."

"You have a higher purpose. Yeah, someone wants to hear."

"We're not messing around with this like half-done stuff like you're putting...

Welcome to brain aneurysm awareness month! For the month of September, Making Headway Podcast and the The Bee Foundation have partnered to provide a month of episodes exploring resources for brain aneurysm survivors and caregivers. We will also be featuring more great survivor stories and advice. Today’s episode speaks with Erin Kreszel and Christine Kondra who have dedicated themselves to raising awareness, support, education, advocacy and policymaking after losing a family member to a ruptured brain aneurysm. They also have rock star support groups free for caregivers and survivors. Be sure to check out this episode and their website www.thebeefoundation.org.

Summary

Erin Kreszel and Christine Kondra from the Bee Foundation discuss their work in aneurysm awareness, advocacy, research, and policy making. They share their personal experiences and the motivation behind starting the foundation. They explain the different treatment options for brain aneurysms, such as clipping and coiling, and the importance of early detection and prevention. They emphasize the need for education and awareness, as well as the role of support groups for survivors and caregivers. The Bee Foundation also advocates for more research funding and policy changes to improve aneurysm care.

Keywords

aneurysm, awareness, advocacy, research, prevention, treatment options, support groups, education, early detection, prevention, funding, policy changes

Takeaways

· The Bee Foundation focuses on aneurysm awareness, advocacy, research, and policy making.

· Early detection and prevention are crucial in preventing aneurysm ruptures.

· Treatment options for brain aneurysms include clipping and coiling.

· Advocacy efforts are needed to improve education, support, and access to care for aneurysm patients and their families.

· Support groups play a vital role in providing community and resources for survivors and caregivers.

· More research funding and policy changes are needed to advance aneurysm care and prevention.

Sound Bites

"We didn't want another family to go through what we went through with this experience and started the Bee Foundation with the sole focus of preventing aneurysms prior to rupture."

"What should we be asking for in terms of prevention? And then what is it that they do? Like we hear these terms coil, we hear snipping, we hear, you know, clipping."

"Advocate for yourself because there is evidence out there that it's genetic and right now the insurance says two or more people and you can get an MRA to look for an aneurysm but we know if you have one person in your family you should be advocating to get an MRA, there's no reason to wait for two."

Chapters

00:00 Introduction and Background of the Bee Foundation

03:11 Preventing Aneurysms Prior to Rupture

07:50 Understanding Treatment Options: Clipping and Coiling

13:19 Advocating for Education, Support, and Access to Care

19:04 The Power of Support Groups for Survivors and Caregivers

26:38 The Need for More Research Funding and Policy Changes

Reach out to:

www.thebeefoundation.org for support groups

https://www.thebeefoundation.org/advocacy-toolkit/: Ellie’s law advocacy

The Bee Foundation on IG: