Posts Tagged ‘brain hemorrhage

01
Aug
15

Questions to Ask AFTER Surgery

Now that you are through your surgery and ready for your first post-op appointment, here are a few questions you will want to be sure and ask:

  • What possible side effects should I look for after treatment?
  • What are the signs of infection?
  • What do I do about constipation?
  • What kind of timeframe am I looking at for recovery?
  • Is it possible to completely recover from treatment of a Brain aneurysm/AVM/Stroke?
  • What activities am I allowed to do?
  • What medications am I allowed to take?
  • Am I permitted to drive?
  • Can I drink alcohol?
  • Can I have sex and when?
  • Can I dye my hair?
  • What other types of doctors do you recommend I see? Do I need to schedule an appointment with a Neurologist, Neurophysiologist, Neuropsychiatrist?
  • How can I help myself recover?
  • Who do I call if I have questions about how I am feeling?
  • Will there be any follow-up after treatment?
  • I am nervous about the hardware that will be used to treat my brain aneurysm; if I bump my head will the coils/clips come undone?
  • What is DVT (deep vein thrombosis)? What are the symptoms?
  • Am I allowed to leave the country?
  • Can I fly in an airplane?
  • Are there support groups available?

Remember that no question is a bad question – so ask whatever you need to put your mind at ease, comfort your heart and walk away feeling some sense of relief.

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18
Jan
15

JNF Awards $90,000 in Research Grants

The Joe Niekro Foundation has announced the 2014 Joe Niekro Research Grant recipients.  A total of $90,000 has been awarded by the foundation, which is committed to supporting patients and families, research, treatment and awareness of brain aneurysmsAVMs and hemorrhagic strokes.  “We are thrilled to award these recipients with this critical funding needed to help support the advancements of neurological research,” states JNF Founder, Natalie Niekro.

The first awardee, Barrow Neurological Institute, has received a seed grant in the amount of $50,000 for the study Deconstructing the vascular tangle-A molecular biopsy of cerebral arteriovenous malformations by Dr. Joseph Zabramski and Dr. Yashar Kalani.  This groundbreaking study will aim to understand the pathogenesis of AVM formation and identify signaling pathways involved in vascular development and AVM formation.

JNF Founder Natalie Niekro along with Board of Directors Members (from left to right) Bill Michels, Kimberly Chapman, Gary Simms and Linda Michels present a $50,000 research grant to Drs. Yashar Kalani and Joseph Zabramski.

JNF Founder Natalie Niekro along with Board of Directors Members (from left to right) Bill Michels, Kimberly Chapman, Gary Simms and Linda Michels present a $50,000 research grant to Drs. Yashar Kalani and Joseph Zabramski.

A $20,000 grant will go to the University of Michigan for the project, Intraventrical injection of noncellular fluid from subarachnoid hemorrhage patient leads to ventricular enlargement and periventricular injury, by Dr. Aditya Pandey.  This current project aims to understand the role of human subarachnoid hemorrhage (SAH) non-cellular cerebral spinal fluid (CSF) in causing hydrocephalus and periventricular cellular injury.

The final recipient, the SNIS Foundation who received a $20,000 award for the Joe Niekro Research 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.

Since inception, the Joe Niekro Foundation has awarded over $500,000 in research funding and has built a patient advocacy network that expands across the globe. The foundation provides education on the causes, risk factorsand 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/.

01
Sep
14

Don’t be a Chicken!!!

In support of BrDon't be a Chickenain Aneurysm Awareness Month (September), The Joe Niekro Foundation (JNF) encourages you to “Don’t be a Chicken.”

Brave survivors of brain aneurysms/AVMs and hemorrhagic strokes will represent The Joe Niekro Foundation during a month of mini-challenges to bring awareness to the importance of early detection and “Getting Scanned.” Don’t be a Chicken is designed to increase awareness of these devastating conditions by asking survivors, caregivers, friends and families to share their stories in attempt to educate the public on the warning signs and risk factors of a brain aneurysm and what to do if you experience “the worst headache of your life.” Courageous survivors and family members from across the country have come together to educate others on the importance of early detection and will be sharing their stories on the RUChickenJNF You Tube Channel, as well as across the foundation’s social media networks.

Plan to see quite a bit of the campaign’s mascot, “Chuck the Chicken” as the JNF will encourage individuals to make Chuck their Facebook profile picture. Signs of Chuck the Chicken have been created for survivors and supporters to download from the foundation’s website and Facebook page, take their picture with and then upload to social media. Throughout the month, Chuck will introduce new elements of the campaign and new challenges for the followers to participate in.

The Joe Niekro Foundation was founded by Natalie Niekro, daughter of the late knuckleball pitcher Joe Niekro, who lost his life to a brain aneurysm in October 2006. The foundation is committed to supporting patients and aiding in the research, treatment and awareness of Brain Aneurysms, AVMs and Hemorrhagic Strokes. The goal of the JNF is to raise awareness about the risk factors, causes and treatments of these conditions, while helping support the advancement of neurological research.  They provide public education and advocacy, support for patients and families, and develop awareness programs and educational materials for hospitals, clinics and other institutions nationwide.

It is estimated that 6 million people in the US have a brain aneurysm (1 in 50 people). Every eight minutes an aneurysm ruptures; killing 50% of those victims within minutes. Of the remaining half, 50% will suffer a delayed death and those remaining will usually suffer severe brain deficits.

One in every 200-500 people has a brain AVM; a dangerous, complex tangle of abnormal arteries and veins. Often the AVM ruptures and bleeds, causing severe brain deficits and sometimes death. The peak age for AVM hemorrhage is the late teens (age 15-20), but an AVM can rupture at any age.

Hemorrhagic strokes make up about 15% of all strokes, resulting in nearly one quarter of all deaths caused by or related to strokes. Approximately 10-15% of people who have this type of stroke will die before reaching the hospital.

“It’s important that we bring awareness to these silent killers and educate the public on the warning signs and risk factors associated with them. Far too many innocent lives are taken each year as a result of one of these conditions and we are here to help educate others before its too late,” says JNF Founder, Natalie Niekro.

Don’t be a Chicken kicks off September 1st . Follow the results at #RUchicken and #JNF or visit www.joeniekrofoundation.org.

For more information on The Joe Niekro Foundation, contact Natalie Niekro – nniekro@joeniekrofoundation.org.

 

31
Mar
14

A Letter from your Brain

Hello,
I’m glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you.  I need you to take care of me. As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, “it’s time to get on with life.” That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don’t shut me out. Don’t tune me out. When I’m getting into trouble I’ll need your help more than I ever have before.
I know that you want to believe that we are going to be the same. I’ll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can’t fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse… I’m scared. I’m afraid that you will do that to me. If you don’t accept me I am lost. We both will be lost.
How can I tell you how much I need you now? I need you to accept me as I am today… not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It’s as if here is shame, or guilt, in being injured. Silly, huh?
Please don’t be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can’t say how far. I won’t make any false promises. I can only promise you this, that I will do my best.
What I need you to do is this: because neither of us knows how badly I’ve been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I’m trying to get your attention in the only way I can. Stop and listen to me.
I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.
I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same… you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don’t want to die, and I don’t want you to die.
I want us to live, and breathe and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don’t want you to give up. Don’t give up on me. Don’t give up on yourself. Our time here isn’t through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn’t easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don’t care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.
Don’t be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.
Please don’t reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.

Love,
Your Wounded Brain

©1996 Stephanie St. Claire

07
Jul
13

DEPRESSION – Series Continuation of The Grieving Process

Over the past few weeks, we have been going through a series called The Grieving Process in which we have been walking you through the various stages of grieving.  Today, we bring you Part 3 – Depression – a feeling we have all had at one point or another.

We hope you have enjoyed this information and encourage you to share this with others.    Thank you for your continued dedication to The Joe Niekro Foundation.   Want to connect with other brain aneurysm and AVM survivors across the globe???  Be sure to visit our online support forum and be instantly surrounded by thousands who can help!

“Depression is the inability to construct a future.“– Rollo May

“There are wounds that never show on the body that are deeper and more hurtful than anything that bleeds.Laurell K. Hamilton

“Depression is a prison where you are both the suffering prisoner and the cruel jailer.”- Dorothy Rowe

In the general population, it is expected that 6 out of a 100 people experience a significant depression over the course of their lives. However, researchers state patients who’ve experienced a traumatic brain injury are 10 times more likely to suffer bouts of severe depression.  Depression following a brain injury is the most prevalent psychiatric disorder with some reports stating 52% of patients will experience depression the first year and an increase of 61% of patients within 7 years. Researchers do not know when depression is most likely to occur after a brain injury, but most agree that patients will see the beginning stages of depression within the first year.  More than half of the people with a brain injury who are depressed also experience significant and high levels of anxiety.

Depression can be more than feeling sad. It is normal for someone who has had a brain aneurysm or AVM to feel saddened by the problems caused by these conditions.  For some survivors, feelings of sadness can extend beyond the normal.

Signs of Depression

  • Feeling down, depressed or sad most of the day
  • Changes in your sleeping habits, such as sleeping poorly or sleeping more than usual
  • Losing interest in usual activities such as favorite hobbies, time with family members or activities with friends
  • Increasing your use of alcohol, drugs or tobacco
  • Not eating as much or eating more, whether or not you are hungry
  • Strong feelings of sadness, despair or hopelessness
  • Thoughts of suicide
  • Lack of concentration or motivation

Having depression after a brain aneurysm or AVM is a painful and emotional experience, but it also compounds many of the challenges patients face afterwards. Depression is an important problem due to its effects on health, productivity and quality of life.  Depression can interfere with an individual’s ability to achieve rehabilitation goals and reach long-term independence.

Effects Depression Can Cause in Brain Aneurysm/AVM Patients:

  • Result in poorer rehabilitation outcomes
  • Reduced activities of daily living
  • Increased experience of failure
  • Increased stress
  • Reduced employment
  • Lead to more frequent divorce
  • Reduced social interactions
  • Increased sexual problems
  • Reduced life satisfaction
  • Result in poorer health-related quality of life

Many different factors contribute to depression after having a brain aneurysm/AVM; and these vary a great deal from person to person. In fact, even the level of depression will vary depending on how significant the injury was. Some survivors can have problems adjusting to their new “changed” lives as they become more aware of the issues or deficits they are living with.  As their insight to their condition grows, they are more likely to become irritable, anxious or easily frustrated.  Emotional and behavioral changes make it difficult for survivors to get along with others and puts strain on personal relationships.

Factors for Depression

Physical changes occur in the brain after an injury – Depression may result from injury to the areas of the brain that control emotions. Changes in the levels of certain natural chemicals in the brain, called neurotransmitters, can cause depression.

Emotional response to injury – Depression can arise as a survivor adjusts to living with a disability or starts to grieve for their life once lived before the brain aneurysm/AVM.  Patients will have emotional reactions to their physical issues, loss of friends, reduced activities or poorer health. A patient may be grappling with questions such as “why is this happening to me?” “how can I cope with a downward spiral in my ability to function?” and “what will happen to my family if I can no longer take care of them anymore?”

Factors unrelated to injury – Some people have a higher risk for depression due to inherited genes, personal or family history and other influences that were present before the brain injury.

It is important to realize that there are different kinds of depression and that no symptom of depression should be taken lightly. Of particular concern is a type called “major depression” and is characterized with symptoms more intense or severe. Individuals with major depression may think about suicide, have a plan for suicide or successfully complete suicide

Individuals who have seizures as a medical consequence of a traumatic brain injury are at risk for developing depression.  A seizure occurs when there is a temporary electrical imbalance in the brain. A person having a seizure can experience uncontrollable body movements, heightened or decreased sensations and varying levels of awareness. Survivors with seizures will report that they feel fearful about the uncertainty of having a seizure.

These individuals experience greater amounts of depression, anxiety, and low self-esteem than that of the general population.

Depression after having a brain aneurysm/AVM is not just a difficult and painful emotional experience, but it compounds many of the challenges survivors face afterwards. Not all brain aneurysm patients are alike, depression symptoms and symptoms of a brain injury (deficits) can appear separately and at different times.  The symptoms of depression and a brain injury can appear to mirror one another.  The symptoms can overlap and be complex, making them difficult for some doctors to distinguish.  Not all patients may link their symptoms to a brain injury or recognize what they are experiencing.  Such as, “is it common for brain aneurysm survivors to feel fatigued easily and have a much more difficult time concentrating?” Depression will compound these issues and problems.  Patients with both a brain injury and depression have greater difficulties in cognitive skills. This can lead to problems in rehabilitation because the ability to think and concentrate is essential to learn new skills, make decisions and solve problems.

A brain injury is an invisible injury and depression is one of the many invisible disorders in which recovery can be further threatened. Having a brain aneurysm or AVM can be devastating to a person’s life and when adding depression, the recovery process can be further hindered.  It is important that survivors and caretakers remain vigilant about the possibility of depression, as well as committed to taking steps to treat it if it should arise. If you have symptoms of depression, it is important to seek professional help as soon as possible, preferably with a health care provider who is familiar with brain injuries.  Family members, friends and caretakers of brain aneurysm/AVM survivors should monitor their loved ones for signs of depression. Depression symptoms should be discussed with a physician or healthcare provider and you should ask for a referral to a neuro-psychologist who specializes in treating depression in brain injury patients.  Other properly trained professionals include psychiatrists, psychologists or social workers.  Depression is a medical problem and it is best to get treatment early to prevent needless suffering and worsening symptoms. By accepting depression as just another obstacle to overcome in the road to rehabilitation, much of the fear and stigma surrounding this condition will be removed.

For more information on understanding depression and treatment options, visit the following links:

Depression After a Traumatic Brain Injury

Depression After a Brain Injury – A Guide for Patients and Their Caregivers

Depression After a Traumatic Brain Injury

Stay tuned for Part 4 of The Grieving Process!

18
Oct
12

LIVING WITH A BROKEN BRAIN

I just returned from our monthly Phoenix Support Group meeting and felt compelled to write about the movie we watched called Living with a Broken Brain.  It is a Documentary in which actress Maryam d’Abo (you may remember her as one of James Bond’s  007 Girls), who suffered a brain haemorrhage in 2007, guides you through her personal journey of recovery and meets other survivors of brain injuries.

“I had struggled to describe to my husband and family how I had felt after my stroke which made it difficult for them to understand and relate to how I was feeling and the emotions I was going through. They say that only those that experience similar situations can really relate so it was like a breath of fresh air to watch this film and find not just one but a number of people that had felt the same as I had done. At the time you feel you are in a cage, clawing at the sides to get out and screaming inside in silence because you can’t find the words,” says D’Abo in the film.

Her experience inspired this film to be made with her husband filmmaker Hugh Hudson who witnessed her illness . Maryam leads us on a personal journey of recovery, giving hope to those who are isolated by their condition. The film is about the sufferings and the struggles of the brain injured. Many first-hand stories celebrate man’s life force and his will to survive and bring awareness of an unpredictable condition that is on the rise, an illness that is not seen therefore often misunderstood. The original film soundtrack is written by Vangelis and Mark Knopfler and amongst the many survivors appearing in the documentary are Quincy Jones – music producer, Pat Martino – jazz guitarist, James Fox -novelist , Robert Mccrum – literary editor of the London Observer. Supported by neurosurgeons, neurologists, neuro-psychologists who give their testimony and knowledge.
The film concerns all human beings, dealing with the fragility of the extraordinary brain of which we know surprisingly little.

I recommend families of all stroke, aneurysm and AVM victims spend one hour watching this incredible profound story.  Finally finding the words to describe something you have felt and then knowing you are not alone in feeling it is incredibly empowering.

I am thankful we had the opportunity to watch this amazing film and thank all those that attended for their continued support, commitment and passion to our cause.
04
Jun
12

Survivor Tale: Know the Symptoms, Get Scanned

Aneurysm Survivor turned author, Maria Ross

Maria Ross is a branding consultant, author and speaker who lives on the West Coast with her husband, Paul and their dog, Eddie. At age 35, Maria was struck down by an unexpected brain aneurysm and had an amazing recovery. She uses her voice to advocate for brain injury survivors and has written a humorous and heartwarming memoir about her experience titled, Rebooting My Brain: How a Freak Aneurysm Reframed My Life (2012, Red Slice Press).   Today, we share a glimpse of Maria’s story with you.

I’m lucky. I know it. In 2008, I suffered a near-fatal brain aneurysm rupture and my husband’s quick thinking when I collapsed most likely saved my life.

People often ask, “Were there signs?”

The first sign happened two months earlier. I am a theatre actress in my spare time and was at an audition. I’m usually quite nervous, so of course I was anxious and my heart was racing. After stepping off the stage, I thought I’d be fine but I experienced a sudden, intense migraine unlike anything I’d ever felt before. One second I was fine – the next, I was nauseous, dizzy and my back and neck muscles cramped up in pain. I went to the doctor and my blood pressure was extremely high but he thought it was due to a lot of stress and change that was going on in my life at that time. We’d just moved to a new city, bought a house and I started a business! Plus, high blood pressure runs in my family.

Since I didn’t want to go on medication right away, he instructed me to monitor my blood pressure for a month and if it didn’t come down, he’d put me on pills. Frequent violent migraines, with the same muscle pain and vomiting, occurred every so often, but not every day.  In the meantime, I was doing more yoga and tried acupuncture to ease the stress. It seemed to work, at least temporarily.

One day, I had another severe headache and vomiting episode and couldn’t go to a client meeting as planned. My husband came home from work early to take care of me. He was home when I collapsed unconscious on the bathroom floor. Acting fast, he called the ambulance and paramedics arrived immediately.

They thought I had a drug overdose, as my symptoms were the same. But after emergency room scans detected the ruptured aneurysm, neurosurgeons performed a coiling procedure to stem the blood flow and saved my life.

While I looked fine, I was far from unscathed. I don’t remember the entire month of August 2008. I was blind for six weeks and visually impaired for longer due to retinal damage from the rupture.  I learned over many months and years of recovery the full cognitive, psychological and emotional impairments that accompany brain damage caused by a cerebral hemorrhage.

I’m absolutely thriving now as a result of the care I received, the resources available and the therapies offered. None of that would be possible without research money supporting the study of aneurysms and brain trauma.

However, all of this might have been avoided if I’d taken my health in my own hands and demanded a brain scan. While headaches are the most common symptom for a variety of illnesses, I knew in my bones this was unlike anything I’d ever experienced. I’m not a hypochondriac or a complainer, so I should have asked more questions, I should have pushed for a scan. Some people say that if I’d gone to the emergency room with my symptoms rather than a private doctor, I would have been scanned and they would have detected the aneurysm before it did as much damage as it did. Who knows? We all know hindsight is 20/20 and I harbor no ill will toward the doctor who misdiagnosed me.

As a result of my injury, doctors have actually discovered another tiny aneurysm in another part of my brain. As long as I monitor it yearly and keep my blood pressure in check, all should be fine. And my older brothers have all gotten brain scans as well, since aneurysms tend to run in families (the theory on mine is that I have a combination of high blood pressure and weak blood vessels, both genetic traits).

My severe sudden headache, combined with the nausea and the neck and back muscle cramping seems to be a textbook symptom for aneurysms – and subarachnoid hemorrhages like mine. So don’t be afraid to ask questions, do your homework and demand scans if insurance will cover them. Better to be safe than sorry!

We would  like to thank Maria Ross for sharing her story with The Joe Niekro Foundation.  Maria’s story has become a light for many others who share a similar experience.  If you are interested in purchasing Marcia’s book, please click here.   Maria will be donating 10% of all net book sales during the month of June to The Joe Niekro Foundation. To find out more about Maria and her story, you can visit her website, www.rebootingmybrain.com




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