16
May
16

May is Stroke Awareness Month

ANYONE can have a stroke, so EVERYONE should be prepared!

A stroke, sometimes called a brain attack, occurs when a blockage stops the flow of blood to the brain or when a blood vessel in or around the brain bursts. Strokes can and do occur in people of all ages. In fact, nearly a quarter of all strokes occur in people younger than age 65.

Each year, almost 800,000 strokes occur in the United States.

Every minute counts when you’re having a stroke!  For every minute after a stroke occurs before treatment, 1.9 million neurons are affected.  In most cases, this causes some form of permanent damage.

Recognizing the Signs of Stroke

F.A.S.T is an easy way to remember the sudden signs of stroke.  When you spot the signs, you’ll know you need to call 911 right away.

FFace Drooping – Does one side of the face droop of is numb?  Ask the person to smile.  Is the person’s smile uneven?

AArm Weakness – Is one are weak or numb?  Ask the person to raise both arms.  Does one arm drift downward?

SSpeech Difficulty – Is speech slurred? Is the person unable to speak or hard to understand?  Ask the person to repeat a simple sentence to see if it is repeated correctly?

TTime to call 911 – If someone shows any of these symptoms, even if they go away, call 9-1-1 and get the person to the hospital immediately.  Check the time so you’ll know when the first symptoms appeared.

Lowering Your Risk for Stroke

Demographic factors such as family history, age, sex, and race/ethnicity can all play a role in an individual’s stroke risk. Regardless of your background, however, there are several things you can do to lower your chances of having a stroke.

  • Control your Blood Pressure – More than half of the world’s stroke deaths are caused by elevated blood pressure levels.
  • Manage your Cholesterol 
  • Don’t smoke – cigarette smoking contributes to one in every five strokes in the US.
  • Exercise regularly and maintain a healthy weight
  • Eat a healthy diet that’s low in sodium.
  • Prevent or control diabetes.
  • Limit your alcohol – Fewer than two drinks per day for men, or one drink per day for women.
20
Apr
16

Should I Get a Second Opinion?

“What should I look for in a Neurosurgeon or Interventional Radiologist?” This is a common question many patients have as they are gaining more knowledge, and it is an answer people need to decide for themselves.  As you seek out medical advice for your care, always remember it is every patient’s right to feel comfortable with his or her decision.

For some patients that may mean only one opinion, but others benefit from a diversity of opinions or providers.  It is important for patients and caregivers to truly understand their options, and it is the responsibility of health care providers to be honest and forthcoming of medical options. Never hesitate to seek out a second or even third opinion; the more providers who look at your case, the more information you will have to determine the best decision.

Should you trust an online review when seeking out another physician? Always consider the source. Patients need to interpret online reviews in a balanced and thoughtful way.  Misunderstanding a doctor review can be a serious detriment.

The best decision is made from the patient who is well-informed.  Here are some questions that may be beneficial for you to ask when speaking to a physician about your case:

  • What is your experience with aneurysms/AVMs?
  • Where was your training and education?
  • How many aneurysm/AVM procedures do you perform in a year?
  • May I have a copy of your curriculum vitae (CV)?
  • What is your complication rate?  What is the national average?
  • What hospital(s) are you affiliated with?
  • How long will I ave to wait for an appointment after I call?
  • If I call with a question, what is the turnaround time for a response?
  • Who covers for you while you are away?

By obtaining a second opinion, you help ensure that you have been diagnosed appropriately and that you will receive the most appropriate and optimal treatment plan. This can provide you with significant reassurance, peace of mind and confidence that you are making the best choice for your health.

Remember to always check with your health insurer on their policy for second and third opinions.

07
Apr
16

Questions to Ask BEFORE Surgery

Thousands of Americans will undergo brain aneurysm/AVM/stroke surgery each year.  It’s important to communicate your feelings, questions, and concerns with your doctor before having surgery. We encourage you to ask your surgeon questions. Information can lessen anxiety by reducing fear of the “unknown.” In addition, a better understanding of your problem can help you make more informed, and, therefore, make better decisions.

The following are important questions to review with your doctor prior to surgery. Ask your doctor to explain the answers clearly and ask for further clarification if you are having trouble understanding an explanation and/or any medical terms. Some people find it helpful to write their questions down ahead of time.

It is important to remember that a well-informed patient tends to be more satisfied with the outcome or results of a procedure:

  1. What possible problems should I look for after brain surgery?
  2. What happens after I am discharged from the hospital after brain surgery?
  3. What type of operation do I need?
  4. What do you expect the surgery to achieve?
  5. Will the operation cure my brain aneurysm/AMV/Hemorrhagic Stroke?
  6. Will I need any other procedure after surgery?
  7. How likely is it that the aneurysm/AVM/Hemorrhagic Stroke will come back at some time in the future?
  8. What are the risks and benefits of this operation/procedure?
  9. What are the likely long-term effects of this operation?
  10. How can I best prepare myself for this operation?
  11. When I wake up, will I be in intensive care?
  12. How long do you expect me to be unconscious after surgery?
  13. What are the possible complications of this type of operation/procedure?
  14. What will happen if I don’t have surgery?
  15. Is there any other type of treatment I could have?
  16. How long will it take me to get over this operation?
  17. How can I help myself recover?
  18. Who will speak to my family after the surgery?
  19. What kind of timeframe am I looking after for total recovery?
  20. Is complete recovery possible?

Please note: This list it is not meant to be all-inclusive, rather a guideline to get you to think about the things that you might want to discuss with your doctor.  All cases are unique, so some of these questions may not apply to your case, and you may want to add some additional questions as well. You may want to talk with your doctor about what you need to do to designate a health care proxy – someone to make decisions for you when you are unable. Also, be sure your file has emergency names and contact phone numbers.

 

25
Feb
16

16 in Sixteen

16 in Sixteen Campaign

 

 

 

 

PLEASE PLEDGE YOUR 16!

We have all felt alone.

That moment where we would give anything to know someone else who has walked the same path.

That person who can give us the strength to make it to the other side.

When we face our greatest challenge we should not be alone!

  • There are currently 6 million people in the US who have an unruptured brain aneurysm
  • As many as 1 in 15 people will develop a brain aneurysm or AVM
  • Every 18 minutes an aneurysm ruptures
  • 50% of ruptured aneurysm patients will die instantly
  • The average age of an AVM rupture is 17 years old
  • There are approximately 120,000 hemorrhagic stroke victims annually

The Joe Niekro Foundation™ is committed to supporting patients and families, research, treatment and awareness of Brain Aneurysms, AVMs and Hemorrhagic Strokes.  We provide education on the risk factors, causes and treatments of these conditions, while funding the advancement of neurological research.

The Joe Niekro Foundation™ Support Groups create a community to help these survivors know that recovery is possible and they are not alone.

  • These groups provide life-saving support to patients, survivors, caregivers and families, both online and in person.
  • Social support is essential to the recovery process and social isolation can greatly reduce patient recovery and outcomes after suffering a Brain Aneurysm/AVM/Hemorrhagic Stroke.
  • Many hospitals are not equipped to offer patients and families the ongoing support post discharge needed for their full recovery.
  • Survivors have the opportunity to meet and learn from other survivors who have experienced similar issues and understand.
  • Support group members learn what to expect during their healing process and develop new coping strategies through shared personal experiences.
  • Members have access to healthcare professionals as well as other survivors.
  • Our education booklet Roadmap to Recovery provides information on topics such as depression, social reintegration, coping with disabilities, nutritional brainpower, exercising your brain and much more.
  • Members feel empowered when they receive access to educational information and emotional support that directly helps lead them to improved health and quality of life.

“A support group can be life saving for a patient and family during their critical recovery period.  I have been amazed by the commitment, the diligence and camaraderie of their members.  I have been deeply impressed by the benefit my patients and their families have received by interacting with others who have survived the same ordeal.  I salute the organizers of The Joe Niekro Foundation for all the good that they do, and am deeply grateful for the benefit my patients have received because of their efforts.”

Dr. Robert F. Spetzler
Director, Barrow Neurological Institute
Chairman and President, Barrow Neurosurgical Associates
Professor of Surgery, Section of Neurosurgery, University of Arizona College of Medicine, Tucson, AZ

“It was in August 2012 and being 19, I was rushed to the hospital. They had discovered that I had a ruptured AVM and a possible stroke. While there isn’t a lot that I remember about the event, I have had to live with many difficulties including forgetfulness, struggling with talking, and my ability to participate in many activities.  It is through the Joe Niekro Foundation and their guidance that I’ve been able to meet and talk to other survivors and understand I am not alone.”

Tyler Landreth, Survivor 22 Years Old, Green, Oregon

Here’s how you can help JNF provide the critical funding necessary to offer a greater support network for survivors and caregivers worldwide:

Share the message with 16 friends and/or share the link below with friends on other social media sites, across the web and by email.

The more people we can educate, the more lives we can save.  It is our priority to create awareness and deliver guidance, knowledge and support to those facing the challenging road of diagnosis, treatment and recovery. Together, we can create this vital community where people no longer have to feel alone – they can thrive, not just survive.

Please join us and pledge or share YOUR 16 in 16!

28
Jan
16

The World as We See It

by: Kimberly Chapman – Brain Aneurysm Survivor

Dear World,

It happens time and time again, a voice echoes loudly within our heads reminding us we are not like you and the outside world views us as different or difficult.  There is no one course of action that a survivor “should take” or a specific way that a survivor “should act” during the recovery process. There are, however, some important things to keep in mind when offering support to a brain aneurysm/avm survivor.

12552833_10208150912159896_4615159395398165507_n1. THE RECOVERY PROCESS NEVER ENDS.

There will never come a time when I forget that an aneurysm entered my life.  Telling me to “move on” or “get over it” never makes me want to embrace myself or the brain aneurysm.  Recovery is a slow process and there are no vacations while I try to learn to navigate through this new life I’ve been given.   I understand my aneurysm didn’t happen to be a death sentence, but instead that it has become a life sentence.  The healing process will never end and it takes a long time before both the heart and mind are on the same track. Moving from healthy person to survivor has been a life changing process, it has transformed how I view and accept the world.  It scratched my lens of perception, landing me into a deeper sense of living.

12494662_10208177688749294_3474789907686182811_n2. SURVIVORS SHARE AN UNSPEAKABLE BOND.

In my 12 years of navigating the world as a brain aneurysm survivor, I am continually struck by the power of the bond between survivors. Our condition connects us and we become friends in mere seconds, even if we’ve never met before. No matter who we are, or how different we are, there is no greater bond than the connection between survivors. It’s a recovery journey for an entire lifetime, and unfortunately only those who have walked our path understand the depth of our pain and pride we carry at the same time.  Being a survivor means I’m part of a club that I can never leave, one that  is full of the most caring souls I’ve ever known.

12509734_10208137958836071_7284252180242417994_n3. I WILL BE A SURVIVOR FOR THE REST OF MY LIFE.

Period.  The end.  There is no “moving on,” or “getting over it.”  I wish people could understand the day my rupture occurred was the day I started fighting for my life.  My aneurysm was not a one time event….it was an event that will last a lifetime.  I’ve become a member of the club called “brain aneurysm/avm survivors” and it’s a club I didn’t apply to join… nor one I can ever leave.  Every single member wishes we’d met some other way, any other but this.  The members are the most beautiful, caring, loving, compassionate people I’ve ever known.  They are the ones changing the way the public views brain surgery and putting an exclamation point at the end of our awareness campaign.

983655_10208069039993143_1648867012181199466_n4. NO MATTER HOW LONG IT’S BEEN, I STILL DESIRE MY OLD SELF BACK. I WILL GRIEVE A LIFETIME FOR HER.

There are great days and then there are the not so good days.  Compassion, love, and understanding are what’s needed- not advice or a lecture on how I was so lucky to have survived.  I miss the prior me and I realize there is no going back.  There will never come a time when I won’t think about what I would be if the brain aneurysm hadn’t entered my life.  It took me a long to build that girl before the rupture and it may take me a lifetime to let her go.   The length of grieving time over prior self is different for each of the club members, but every person will face a life changing moment when they realize they can’t continue down the pathway of “prior self” and must take that fork in the road towards rebuilding.

1526527_10208059758881121_8080642560998311422_n5. THE CAUSE NEVER BECOMES LONELY.

Every day another person joins our club.  Every day another survivor gets upset about how our cause is not known.  They are the ones who spearhead awareness campaigns or launch a crusade of involvement.  They do this in the hopes of saving another person from ever having to join our club.  Curious to who the movers and shakers are in this cause?  Look for the survivors who are turning their tragedy into a triumph.  They’ve transformed their pain into a force to make a difference.   They are the ones who have figured out that if they stop crying, they can be strong and create a movement.

10014930_10208051692439465_6879369758593637242_n6. BECAUSE I KNOW DEEP PAIN, I ALSO KNOW UNSPEAKABLE JOY.

Even though I may be in recovery for a lifetime, grieving my prior self doesn’t mean my life is void of happiness, love, and enjoyment.   I don’t have to choose between grieving my prior self or happiness.  In this situation, grieving and happiness can cohabitate.  My life is more enriched now that I have experienced a brain aneurysm.  I now think from a deeper place and love from a fuller heart.  Due to the fact that I’ve experienced pain, sorrow, and fear my joy comes from a place of pureness and what is essential to live for.

 

10
Jan
16

JOE NIEKRO FOUNDATION AWARDS OVER $240,000 TOWARD BRAIN ANEURYSM, AVM AND HEMORRHAGIC STROKE RESEARCH FUNDING

Nationally recognized non-profit, The Joe Niekro Foundation™ has announced the 2015 Joe Niekro Research Grant recipients. A total of $240,000 has been awarded by the foundation, which is committed to supporting patients and families, research, treatment and awareness of brain aneurysms, AVMs and hemorrhagic strokes. “We are honored to be able to collaborate with these amazing recipients and provide them with the critical funding needed to help support the advancements of neurological research,” states JNF Founder, Natalie Niekro.

Barrow Neurological Institute, has received a $160,000 grant for the study Deconstructing the vascular tangle-A molecular biopsy of cerebral arteriovenous malformations, by Joseph Zabramski, MD and Yashar Kalani, MD. This groundbreaking study will aim to understand the pathogenesis of AVM formation and identify signaling pathways involved in vascular development and AVM formation. This is the second grant Barrow has received from The Joe Niekro Foundation™ for this study and provides the funds to cover expenses for the entire 2016 year. “On behalf of all of us at the Barrow, we want to thank you for your appreciation and continued support of this project,” states Dr. Kalani. “We are incredibly grateful to the Joe Niekro Foundation™ for their continued support and ongoing efforts to help make this collaboration a successful one,” claims Joseph Zabramski, MD.

University of Texas has been awarded a $20,224 grant for the project, Application of Machine Learning Techniques to Improve Outcomes after Aneurysmal Subarachnoid Hemorrhage, by Huimahn Alex Choi, MD MS and Jude Savarraj, PhD. The goal of this project is the realization of a machine learning model that will reliably predict the occurrence of delayed cerebral ischemia (DCI) after a Subarachnoid Hemorrhage at least 24 hours before onset, allowing enough time for a meaningful clinical intervention.

A continued partner and collaborator of The Joe Niekro Research Grant, SNIS Foundation was the recipient of a $40,000 grant. This annual grant enables investigators to conduct pilot projects related to brain aneurysms, AVMs or stroke. It is the intention of the grant that the seed data from these projects will indicate feasibility and appropriateness of the research prior to applying for further funding; therefore, emphasis will be placed on research deemed to have the most potential for future funding. “JNF is a wonderful supporter of the SNIS Foundation and we are honored to steward JNF’s resources in innovating and improving care,” says SNIS board member and UCSF Interventional Neuroradiologist, Steven Hetts, MD.

Other 2015 grant recipients included:
Crouse Hospital – Syracuse, NY
St. Joseph’s Hospital – Phoenix, AZ
Child Legacy International – Boerne, TX
Houston Methodist Hospital – Houston, TX

Since inception, the Joe Niekro Foundation has awarded over $1,00,000 in research funding and has built a patient advocacy network that expands across the globe. The foundation provides education on the causes, risk factors and treatments of these conditions, while funding the advancement of neurological research.

Click here to view the list of previously funded projects.

For more information about funding opportunities including program guidelines and contacts, visit http://www.joeniekrofoundation.com/research-grants/grant-guidelines.

 

14
Dec
15

Joe Niekro Foundation Workshop Hits the Mark

JNF shined this weekend at the 1st Annual Facilitators and Administrators workshop. Twenty four JNFMicrovention ambassadors came together for a three day workshop packed with informational, educational and engaging sessions designed to increase the overall knowledge and involvement of our Support Group leaders and hospital partners.

The Joe Niekro Foundation Support Groups and Facebook online forums provide an invaluable resource for brain aneurysm and AVM patients, caregivers and families in the community. Strong facilitation is essential for the sustainability of a support group and the motivational seminar provided the framework to empower our facilitators to be the best leaders they can be.


Me Kim and RobThe group began the weekend with a personal tour of the Microvention Plant where they were able to learn about the latest advancements within the Endovascular industry and had a hands opportunity to witness the coils, stents and flow diverters in the making. Microventions’ founder, Rob Greene wowed the group with a lunch discussion on The History of Coils, while the entire office welcomed JNF to their facilities. Outside of the Microvention tour, the group enjoyed discussions on the various ways to make their group one of the strongest in the country.

Between ice breakers and One Minute Limit challenges, the group shared their successes and learned all that is available to them through the Joe Niekro Foundation™.Team Sparkle

The weekend was truly an opportunity of a lifetime and we are so grateful.  Thanks to all who participated and made it such a memorable time together.
#JNFWorkshop2015.




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