Looking Back…Moving Forward: Adding a Touch of Pixie Dust
As we continue our interview series commemorating our 30th anniversary, this week we sit down with Tina Daniels, the Hydrocephalus Association’s (HA) support group leader in Owasso, Oklahoma. Tina was born with hydrocephalus and shortly after birth had a shunt inserted. Aside from headaches and eye issues, the condition does not affect her very much. As she states “I am actually one of the ones who has never had a shunt revision!” Tina shares her experiences leading a support group and words of wisdom for caregivers and individuals living with hydrocephalus. Read more
Swimming with the Sharks!
This past weekend Team Hydro swam in the 21st annual Alcatraz Sharkfest Swim, a swim from Alcatraz Island to Aquatic Park on the shores of the city of San Francisco, CA. Team Hydro brought together 75 swimmers ranging in ages from 12-62 to brave the grueling, cold, open water of the San Francisco Bay for this 1.5 mile swim. As of swim day, the team had raised over $23,000, with the expectation of raising at least $50,000. To date, Team Hydro’s efforts have increased awareness and contributed over $323,000 to hydrocephalus research. Read more
The Patient’s Perspective
A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses. – Hippocrates
I’ve recently had some unexpected health issues that have given me some time to pause and see life from a different perspective. I don’t share this to scare anyone – I am doing fine and mending very well. I share it because I’ve gained insights as a result of this experience that I do want to share with you.
Life as a “patient” is like living on a different planet. At least, that was my initial perception of it. Read more
Codman Announces Voluntary Recall of CERTAS™ Programmable Valve
Codman announced yesterday that it has made a proactive decision to recall any CERTAS™ programmable valves still in stock at hospitals and medical facilities. According to Codman, this recall was not initiated as a result of reported problems with the shunt in patients. In a letter to neurosurgeons and neurologists, Codman stated that this was a voluntary decision based on a very small percentage of possible cases where the valve setting could change after an MRI procedure, or a problem could arise when trying to use the hand-held programming tool. Read more
Brushes with Mortality: 5 Lessons On Dealing with Hard Times
This article has been reprinted with permission by the author. It originally appeared on the Tiny Buddha website.
by Rachel Katz
“When we come close to those things that break us down, we touch those things that also break us open. And in that breaking open, we uncover our true nature.” ~Wayne Muller
As someone with a serious chronic medical condition, I have danced with mortality. Many times. It wasn’t until our most recent pas de deux, however, that I truly understood just how much this dance could impact me.
Read more
New Hydrocephalus Shunt Systems Page Launched!
We recently asked on our Facebook Page: How many components do you think a shunt system has? We were so pleased to see 87% responded with the correct answer.
Yes, shunts typically consist of three major components. 1) An inflow (proximal or closer to the inflow site) catheter, which drains cerebrospinal fluid (CSF) from Read more
Looking Back…Moving Forward: Focusing on the PATIENT
As we continue our interview series commemorating our 30th anniversary, this week we sit down with one of our earliest supporters and a current member of our Board of Directors, Dr. Marvin Sussman. As many of you will recall from an earlier history series interview with Emily Fudge and Cynthia Solomon, Dr. Sussman came to the Hydrocephalus Association (HA) when he received a phone call from Cynthia, one of our founding members, after her son’s shunt failed. Dr. Sussman, then Director of Marketing and Sales at Cordis Neuroscience Business (now Integra LifeSciences), personally called her back and, after they talked, supported the idea for a patient-focused organization for individuals living with hydrocephalus. Since that time, Dr. Sussman has shared his wealth of knowledge regarding hydrocephalus and medical devices to our membership in the form of papers, articles, blogs, and presentations. He has also served on our Board of Directors for 13 years and, in that capacity, has advised on numerous internal projects that have moved the HA agenda forward. Read more
Research UPDATE: MYI Publishes Article in Journal of Experimental Neurology
Joon Shim Ph.D., a recipient of HA’s Mentored Young Investigator (MYI) award in 2009, has published an article about his findings: VEGF, which is elevated in the CSF of patients with hydrocephalus causes ventriculomegaly and ependymal changes in rats in the journal Experimental Neurology. Dr. Shim’s study investigated the role that vascular endothelial growth factor (VEGF) could play in the development of hydrocephalus. The data from the study supports the idea that VEGF was elevated in patients with hydrocephalus compared with controls. This indicates that VEGF may be a useful biomarker for hydrocephalus The clinical relevance of this work is that anti-angiogenic drugs may be useful in patients with hydrocephalus. The findings of Dr. Shim’s study can be found online here.
At HA, we strive to encourage the work of young researchers in the field of hydrocephalus. We are thrilled by the recent publication of one of our MYIs and we congratulate Dr. Shim on his accomplishment.
Looking Back…Moving Forward: Six Years After My Shunt Was Installed
By Gilda Katz, MSW (retired)
I am now 73 years old. On April 24, 2007, at age 67, I had a programmable ventricular peritoneal (VP) shunt inserted in my brain at St. Michael’s Hospital, Toronto, because I had adult onset idiopathic Normal Pressure Hydrocephalus, also known as iNPH. The diagnosis took at least 2 years to make and involved several medical specialists, some of whom declared my symptoms psychosomatic. Others felt I had hydrocephalus, but that I should wait to be shunted because of the dangers of the operation and the risk that the outcome would not result in significant improvement. My earliest symptoms had been a sensation like that of walking on gum, and progressed to an inability to walk without a walker, uncontrolled urination, difficulty concentrating and understanding complex ideas, and trouble remembering things. Read more
Nicole Wiegers: A Crusader, In Every Sense of the Word
High School graduation is around the corner. A handful of members from our community excitedly prepare to leave behind the hallways, locker rooms, and cafeterias of their high schools and transition to the next phase of their lives, be it a college campus, a job, travel, or a well-deserved sabbatical. HA takes our hat off to all of you…and also takes a moment (or, in this case, a blog or two) to highlight some seniors who have made an impact in their own communities and in our larger hydrocephalus community.
On February 19th and 20th, during the last regulation home game for the men and women, the Whitinsville Christian basketball squad celebrated “Senior Night” to honor the athletic careers of the graduating seniors.
For senior Crusader, Nicole Wiegers, this night had even greater significance. Nicole’s team used the monumental night to raise awareness about hydrocephalus. Read more
