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ASAP Blog: Communication and Information for the SM and CM Community
Hope Renewed
Written by: Sara Patterson on August 2, 2010
It happens every year. Attending an ASAP Chiari & Syringomyelia Conference renews the spirit and breathes new hope into what seems like hopeless situations. This year was no exception.
My daughter just celebrated her sweet sixteenth birthday. All she wanted was to attend the conference- her one chance to see and talk with other kids who face the same challenges she does. So I packed her up and brought her to Austin, TX. No small feat since she is home bound at this point. For the past several months she has spent day after day lying in bed, unable to sit up for more than an hour at a time before the pain gets unbearable.
She wasn’t able to participate in most of the youth activities- her pain levels kept her in the hotel room most of the time. But still she said it was great, and can’t wait to go again. And mom? Well, I left with all kinds of great information that is going to help me get my daughter functioning again. For the first time in months, I feel hopeful and confident that help is out there. Now I know what to look for and where to go.
My daughter will be up and functioning again. She will lead a fulfilling and productive life.
Maybe you are feeling as downhearted as I was when I stepped off the plane in Austin. If I can share one thought with you- it’s this: don’t give up. Stay connected to ASAP and keep reading and searching and asking questions. Together we can do this! We can improve lives and find the help and hope we need.
ASAP Chiari & Syringomyelia Conference
Written by: Patricia Maxwell on July 7, 2010
I 've been going over the program for this year's conference and the variety of subjects covered is amazing! The children will even have their own program with Child Life Specialist. Last year they had so much fun, I'm sure this year will be just as exciting.
When they told me they wanted to have the conference in Texas, I asked 'are you sure?' I was thinking about how hot it can get but since everything is air conditioned, they weren't worried. Well as it turns out, Texas is one of the cooler spots in the nation right now.
If you're looking for a great learning experience, a place to make friends or just a break in the routine, join me in Austin, Texas in a couple weeks. We'll give you a warm southern welcome.
ASAP Chiari & Syringomyelia Conference
Written by: Patricia Maxwell on June 22, 2010
ASAP will host our 22nd annual conference on July 21-24. The deadline to make your reservation at the Hyatt Regency Austin Texas is June 30 in order to receive the special rate of $129 (+tax) per night.
This will be my 19th year to attend and every year I learn something new. Dr. George has put together a great agenda that will cover a variety of topics. You will have the opportunity to ask questions of the experts, talk to others who share your concerns and know you are not alone. Unfortunately with Chiari and syringomyelia, the patient often has to be their own advocate. The conference will help you to understand more about the disorders, the current trends in treatment and how to share that information with your medical team.
People often tell me their family just doesn’t understand but by attending the conference they will get a much clearer picture of how these disorders affect your everyday life. So bring the family, see Austin, and find out what the ASAP Chiari and Syringomyelia Conference is all about. I look forward to meeting you. Read more...
Co-pays
Written by: Sara Patterson on May 29, 2010
Co-pays, co-pays, co-pays! As a parent of a child with special health care needs, I know co-pays can wreak havoc on the family budget. If your insurance plan is anything like mine, you may end up paying more in co-pays then you do in maximum out-of-pocket expenses. This can amount to thousands of dollars in “extra” medical bills that don’t count toward the annual cap.
There is help available. UnitedHealthcare has grants available for children's medical needs that are not covered under commercial insurance plans. To find out more visit UnitedHealthcare Children’s Foundation
Adults receiving treatment for chronic pain can apply for grants through the Patient Advocate Foundation Co-Pay Relief.
If you know of a foundation offering grants to help cover medical expenses, please post. Together we can inform each other!
Chiari on CSI
Written by: Sara Patterson on March 21, 2010
My busy schedule doesn't often provide much time for television, but I must confess there is one program that provides a welcome diversion to daily life: CSI. I miss Gil Grissom, I’m glad Sarah’s back, and I’m getting used to Dr. Ray. Imagine my surprise when their fictional lives collided with my real world life: their victim had a Chiari malformation!
The episode, titled Internal Combustion, begins with a dead teenager about to undergo an autopsy. The external exam turns up no obvious cause of death, but when the skull is removed all is revealed: the victim had severe brain edema. But why? There is no brain trauma. An MRI scan reveals a herniated cerebellum and brain stem: a Chiari malformation. Dr. Ray tells us most patients are unaware they have Chiari until a minor trauma or neck flexion triggers symptoms.
So far, I’m not sure if I should be pleased or not. Chiari has made prime time television, and it’s true, many people become aware of the condition after a minor trauma. But they don’t die. And this is CSI-- someone is always dead, and in this case it’s the Chiari patient!
The reenactment of our victim’s demise is even more frightening. Here, they picture a perfectly healthy, conscious, teenage boy walking down a school hallway when he suddenly drops dead. Yes, literally falls to the ground-dead. My heart begins to ache as I imagine parents seeing this and asking themselves, “Could that happen to my asymptomatic child?”
I think the answer is a resounding no. The plot line seems to have several serious flaws. The victim died of brain edema due to extremely high intracranial pressure. We know this can be fatal. But do people suffering from extremely high intracranial pressure drive themselves to school and walk down halls with the appearance of normalcy? Wouldn’t the high pressure cause a severe incapacitating headache, vomiting, and a loss of consciousness well before death occurred?
Dr. Robert Keating, pediatric neurosurgeon at Children’s National Medical Center in Washington, D.C. says, “Despite Hollywood's infatuation with the endless mysteries of Neurosurgery, I am continually amazed by the overall lack of medical accountability in their attempt at prime-time drama. Although there are rare reports of sudden death in connection with Chiari malformations, the recent episode of CSI dealing with this same issue raises more questions than it answers. Nevertheless, for the record, it is exceptionally rare for an individual with a Chiari malformation to inexplicably die without due cause. It is more likely that patients with chronic issues may be at a greater risk from trivial trauma and this is usually preceded by Chiari symptomatology. Consequently, should an individual begin manifesting occipital headaches, neck pain, upper/ lower extremity weakness/ numbness or paresthesias, trouble swallowing / phonation or difficulty breathing after head or neck trauma, one should be alert to the rare possibility of exacerbation of a Chiari malformation and seek medical attention. For the majority of patients with Chiari malformations, the likelihood of a CSI incident remains remote and should not in turn add any undue stress or anxiety to their condition.”
So, while we can rejoice that Chiari malformation is well-known enough to be used in popular dramas, we must now deal with the flip-side of the triumph: lots of inaccurate information! The bottom line is sudden death from Chiari in a patient with no other medical complications makes good fiction, but is not very realistic.
You can see the promo video for this episode by clicking here.
What do you think? Share your reaction to seeing Chiari portrayed on CSI.