Welcome to ASAP’s new improved website!

ASAP has a new look! We’ve been working hard behind the scenes to bring you an updated, easy to navigate website. Take a few minutes to become familiar with the layout and browse the new content. Our new website is specially designed to meet the Web Accessibility Guidelines to ensure content is accessible for those with disabilities. Enjoy! Let us know what you think. Email comments to info@ASAP.org

ASAP Launches Early Detection and Awareness Campaign

Early DetectionAs part of our ongoing commitment to promote early detection of Chiari and syringomyelia, we’ve launched a national awareness campaign that moves across the country. How? Trucks!

CTX-Group, a trucking company with routes throughout the Mid-Atlantic States, has donated their trailers for ASAP to place public service advertisements. Ten trailers are already outfitted with the ads, and more are in the works.

Each one features the faces of individuals affected by Chiari and syringomyelia with catching slogans such as: Headache after coughing or sneezing? Ask your doctor about Chiari malformation; and Spinal cord, scoliosis, bladder problems? Ask your doctor about syringomyelia. Each truck also has the ASAP.org web address.

The goal of this campaign is promote early detection of CM and SM and increase awareness of the disorder. Special thanks to CTX-Group for donating their trucks, and Finger Print Media for donating design and product costs.

Keep your eye out for these unique public service ads!

Questions Asked by the Newly Diagnosed

Request a free information packet!

Do I need to see a neurosurgeon?

Yes. It is recommended that all persons diagnosed with Chiari malformation and/ or syringomyelia (syrinx) consult with a neurosurgeon.

Wouldn’t a neurosurgeon automatically recommend an operation?

No. Not all patients will need a surgical procedure, but a neurosurgeon is well qualified to determine if you need one at this time.

Will I get worse if I don’t have surgery?

Not necessarily. The natural history (what happens if nothing is done) is not well understood. Some patients will progress, others will remain the same, and a few may improve with no intervention.

Will I need regular monitoring?

Yes. Whether you receive treatment or not, MRIs may be recommended in the future depending upon your individual situation. Always report any change in your condition to your physician. New or worsening symptoms might be a sign of progression.

Is surgery a cure?

No. Surgery is a treatment, but not a cure. Some symptoms are more likely to improve with surgical treatment than others. Talk to your doctor before surgery about what he/she anticipates will improve with treatment.

Are there treatments other than surgery?

Surgery is the only treatment for Chiari and syringomyelia, but many symptoms can be treated or controlled with medication or other therapies.

What if I don’t agree with the surgical opinion?

Seek a second opinion. Surgeons often sub-specialize. Some treat more brain tumors, vascular disorders, and some have a special interest in Chiari and/or syringomyelia. Look for a surgeon who has treated a large number of cases or who has a special interest in your particular diagnosis.

Are these conditions fatal?

Chiari malformation and syringomyelia are not typically considered fatal conditions. However, a Chiari malformation or a syrinx that extends into the brainstem (syringobulbia) can affect the breathing and swallowing centers. If these centers are severely affected, you can be at risk for serious complications.

Where can I get more information?

ASAP will be happy to mail you a free information packet.  Submit your request here.

Chiari on CSI

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.

MORE

Bill

BillIt all started for Bill after a motor vehicle accident in August of 1995. After being released home from the hospital, he quickly returned to work but the problems were obvious: forgetfulness, leaving his vehicle running in the parking lot, passing out at his desk and car, tremors, migraines, personality changes, anger, then a seizure.

Doctors suggested it “was all in his head”, but Bill kept searching for answers. Finally he was diagnosed with syringomyelia. Shortly therafter he underwent surgery and with the help of a team of physicians, is still learning to cope.

Bill has many serious challenges including continuing pain, bowel and bladder dysfunction, lack of sensation, and a host of skin problems, to name just a few. He has a neuro stimular for his bladder and a percutaneous cecostomy that helps with bowel functions. He says,”Life goes on”.

Bill lives in Alaska with his wife and kids and his hobbies include: electronics including repair, antique autos and woodworking. He is also active in his local church.

Kimberly

Kimberly was diagnosed at the age of three with idiopathic syringomyelia. She underwent a major surgery to have a syrinx shunt placed in 1999 but her relief was short lived. After consulting with a more experienced neurosurgeon, the family learned that Kimberly actually had Chiari malformation and a tethered cord which were the cause of her syrinx. Once these conditions were treated, her syrinx decreased significantly. Kimberly has a VP shunt for pseudotumor cerebri and she has been diagnosed with osteoporosis and Ehler-Danlos syndrome. She lives with chronic leg pain and uses a wheel chair to get around more comfortably. Her life changed dramatically in 2005 when she got her assistance dog, Lace. Listen to Kimberly describe how Lace has helped her.

Get the Flash Player to see this content.

Dana

DanaDana lives in Connecticut and was diagnosed with syringomyelia from C-5 to conus in June of 2008. Her colorful hat hides a shaved head. Severe head pain had her literally “pulling her hair out”, so she finally gave up and shaved it off.

She has a wide variety of symptoms including neck, arm, and back pain, numbness, hand swelling, short term memory loss, fluctuations in blood pressure and heart rate, dizziness and fatigue. Currently, she is still waiting for further neurosurgical consults.

Keegan and Kaylee

keegan and kayleeThis brother and sister have something in common after all! Both have the same diagnosis. Keegan was diagnosed at the age of eight with Chiari malformation and syringomyelia. He was born with Hydronephrosis, an extra digit, benign heart murmur, allergies/asthma/a food allergy, sleep apnea, and restless leg syndrome. He had decompression surgery in June of 2008.

Kaylee is the older of the two but was diagnosed after Keegan. She was diagnosed with Chiari at age 11. She had a decompression surgery in December of 2008. Prior to surgery, she had daily headaches, motor skill issues, dizziness, blurred vision, urinary frequency/urgency issues, intolerance to heat, and numbness/tingling/pain in her limbs. Today, both kids are doing fairly well.

Glenna

GlennaGlenna has had scoliosis for as long as she can remember. It was never much of a problem until Christmas Eve 2004. Suddenly, out of no where, Glenna experienced the most excruciating pain she’d ever had. It started in her spine and wrapped around to the front of her rib cage, up to her neck, and seemed to “attack” her left shoulder. She says, “The pain was so intense that I thought I was going to die – literally.”

After consulting with several neurosurgeons, she was diagnosed with idiopathic syringomyelia. She has not had surgery and currently is being treated at a pain clinic. It took her a couple of years before she could finally wrap my mind around what was going on and accept it. She says, “I don’t dwell on what might or might not happen in the future. I live each day the best I can and remember that each day is a gift and there are no guarantees.”

Roz

RozRoz was diagnosed at the age of 48 with both Chiari and syringomyelia. She had a decompression surgery in 1999. The surgery was successful in providing relief of her debilitating headaches. She still has a syrinx and manages her remaining symptoms with the help of a pain specialist. Roz is a regular participant on the ASAP message board and enjoys answering questions for people when she can. Over the years she has learned how to cope with living with the uncertainties of a chronic disorder. She says, “more worry means more pain. What helps me cope is to focus on something else and try to get outside more.”