About Me

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Virginia Beach, Virginia, United States
I am a wife,mother,and nana learning to live with a disorder called Chiari1 Malformation with syringomelyia & other disorders all related to the chiari.I traveled a long journey too find results and my wish is to help others find help thru my experiences.I have given up a career I worked hard at for over 3 decades, but the 1 thing that I lost, is I am unable to be the mother I had planned and should be to my daughters, and that by far is the greatest loss of all.I was happy to have validation but accepting limitations is difficult for one who was so active and independent and wanted so much more for my children, as we all do as parents. I made friendships that are more valuable to me than any pill. They make me smile, laugh, and cry,but most of all they saved me from the aloneness.My wish. after a cure is that someday I can turn to a neighbor, new friend, or even a medical professional and when I say I have Chiari the answer will not be "Chiari what is that?" Wellcome to my journey into discovering all I can about my disorders and try to bring awareness and maybe share a laugh with someone and let them know that they too will never have to travel this road alone.

Wednesday, January 28, 2009

Public Announcement for Chiari and the people who love and take care of them for thier Doctors too

From sheilas family and stuff
FOR IMMEDIATE RELEASE PUBLIC SERVICE ANNOUNCEMENT LITTLE-KNOWN SPINAL DISORDER SHOWS FEW OUTWARD SIGNS by Virginia Bennett Vicki is a 28 year old mother of two rambunctious children both under the age of six. She appears healthy as she enters through the doors of the gym where she works as a personal trainer. Pony-tail swinging and accompanied by the muffled sounds of her cross-trainer shoes upon the sidewalk, she greets her clients with a smile. Yet, Vicki is holding on by a thin thread, for she is fighting a number of debilitating health issues which belie her appearance of "normal." In spite of a broken spinal fusion for which she is seeking surgical help, she is also battling a rare condition known as syringomyelia which developed after a motor vehicle accident 2 years ago. Once healthy, strong and outgoing, Josh earned his living as a hardworking power lineman. An onset of debilitating symptoms and subsequent diagnosis of syringomyelia now keeps him mostly homebound, advocating for improved working conditions for those dealing with high-intensity electrical wire atop dizzying power-poles. Vince, a renowned radio-controlled airplane competitor, now stays home to watch his children and suffers in pain after an auto accident injured his spine and left him battling syringomyelia (SM) instead of downdrafts and demanding landings. His wife works full time to pay the bills. Keesha is also a mother of young children. In her late 20's, she has achieved three college degrees and is a qualified teacher. She should be continuing her teaching career, working in her Arizona yard or riding on amusement park rides on the weekends with her young family. Instead, she is filling out forms for Social Security Disability Insurance, traveling to hearings and doctor appointments while she faces the challenges of knock-you-to-your-knees headaches, weakness and pain throughout her body. Keesha suffers from not only syringomyelia, but also a related condition called Arnold Chiari Malformation (CM), or simply "Chiari." Once these patients receive the diagnosis that they suffer with one or both of these incurable conditions, their lives will never be the same. They may appear "normal" to the world around them, yet they deal with neurological pain and diffuse weakness which prohibits them from living any kind of normal lifestyle. Chiari was discovered in 1898 by Professor Hans Chiari who, during his postmortem studies in Germany, found that a certain percentage of people seemed to be born with a too-small area in the back of their skulls, thereby causing a piece of their brains to be forced down into their spinal cords. Long before the advent of MRIs and radiological imaging, Dr. Chiari found that a part of the cerebellum (which lies at the back of the head and believed to control movement) can herniate into cone-shaped "tonsils" which then fill up the hole located at the junction between the bottom of the skull and the top of the cervical spine. When the tonsils dip far enough down into this hole, the ebb and flow of cerebral spinal (CSF) fluid is obstructed. Betsy, an artist in Pennsylvania, knows well the symptoms caused by obstructed CSF flow and the subsequent pressure upon vital nerves. She has lived with Chiari for 30 years and endured 11 surgeries. Her symptoms run the gamut from simple "pins and needles-type" tingling, numbness, impaired cognitive function, inexorable headaches which radiate out from the base of the skull toward the eyes and ears and then radiate down through the neck to the shoulders, arms and hands. Tremors are typical, along with bladder and bowel dysfunction, sleep apnea syndrome and a general weakness that defies description. Many people are often misdiagnosed before finding out they have Chiari, a condition which afflicts women 3 to 1 over men. They are told they have multiple sclerosis, fibromyalgia, restless leg syndrome or chronic fatigue syndrome. Or, worse, in the case of women, some have been told their symptoms are attributable to PMS. Men and women alike are often told it is "all in their heads" and are given a prescription for antidepressants or psychological evaluations. Patients begin to believe those doctors respected within their community and thus question their own sanity or work ethic. Until one day, a bright, young neurologist, an older, compassionate GP or even a licensed homeopathic-practitioner recognizes the symptoms and urges the sufferer to have an MRI done of their brain. The good news is that with the correct knowledge and expertise in Chiari, it is easy to diagnose the condition with a simple look at the patient's films. The bad news is there simply is no cure. Surgery can be performed but the best that can be promised is a slowing of the progression of symptoms. Neurosurgeons enter the back of the head at the base of the skull and remove bone and tissue to increase an opening for spinal fluid flow. Some surgeons will also cauterize the cerebellar tonsils in order to encourage the hole-plugging tissue to back away from the vital opening at the top of the spine. Linked to Chiari Malformation is another spinal cord condition known as syringomyelia, a disease where a fluid-filled cyst or syrinx occurs within the spinal canal. CSF moves up and down through the space around the cord with each heartbeat. The fluid inside the syrinx can compress the cord out against the adjacent bony rings of the spinal vertebrae, thus compressing and damaging the nerve-laden interior of the cord . Some surgeons elect to divert any fluid from reaching the syrinx through use of a shunt inserted into the cord. Often a syrinx is found to be caused by the obstructed CSF flow from a Chiari condition. At other times, a syrinx is brought on by head or spinal trauma such as whiplash incurred during a motor vehicle accident and no Chiari is present. "While research into the causes of the severe, nerve-damage-related pain is progressing, the actual mechanisms involved are still poorly understood. Current medications are not effective in many cases or only partially successful in dampening down the pain and other symptoms of Chiari and syringomyelia," says Sarah Bates of Paradise, CA, herself a CM sufferer and advocate for her peers through her role as board member of the Wishes and Rainbows organization, which "educates, encourages and assists" those with CM and/or SM. To Betsy, Vicki, Vince and others like them, the hardest things to face are often outside the doctors' offices. Families think they look fine and healthy so they must be lazy or obsessed unnecessarily with their health. Employers cannot understand why a previously outstanding employee begins to decline and cannot keep up an adequate standard of work. Insurance case managers and disability examiners cannot comprehend the pain and weakness inherent to syringomyelia and Chiari because, though these conditions are not really rare, they are not widely-known or understood. The average doctor may not encounter a single case in his career. Hence, the misdiagnoses and judgment that these sufferers must deal with in conjunction with their symptoms. A person can be born with Chiari Malformation and lead a full life never knowing their condition exists. Such a person may only become symptomatic when trauma is experienced: an accident, fall, difficult childbirth or even a lengthy bout of sneezing. To assist with raising funds for research and helping patients find quality care and peer support, the American Syringomyelia Alliance Project (ASAP) was formed. A busy message board exists at this educational website where peers from around the world visit on a daily basis, each feeling a part of a larger family that understands his or her condition and challenges. A 20-something woman from Denmark, a mother from the UK with a 14 year old girl suffering from postoperative pain, a lonely woman in the Philippines, a young woman in Australia whose family cannot understand her pain in spite of her decompressive surgery all join in congenial visits with men and women from every state in the US. Each, in spite of their own situations, uplift others with cheerful notes or helpful advice. "Education and awareness are key in finding treatment and a cure for those afflicted," Sarah Bates says. For more information, visit www.asap.org and www.wishesandrainsbows.org. Note to editor: This article may be reprinted in its entirety without permission by the author. To reach the author, please contact Virginia Bennett at virginiabennett@netscape.com. word count, 1352 You are visitor: Return to: Articles and Information Home

11 comments:

Shauna said...

Hi Shelia!!

Come on by and pick up an award, a 'Premio Dardos' that I have given you!!

xoxoxo

Shauna

Monica said...

Shelia,
I have hydrocephalus. It is sometimes related to chairi. I just found your blog and really enjoy it.

kimberly said...

Hi Shelia, Just been told I have hydromyelia. Been in pain for 10 years my family can't handle this . thank you for your words. wish something would help the pain.

offshore said...

Hello, by browsing internet I recently go on a site http://www.chiarisupport.org
Here, I learnt how people are suffering from chiari malformation not only physically but also mentally.
I hope more medical research as well as solution will bring smile on affected people.

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