[Ed. Note:  The opinions expressed below are solely those of the author.  They do not represent the opinions of the editor, publisher, or this publication.  Anyone with a medical problem is strongly encouraged to seek professional medical care.]    

I am a board certified pediatrician practicing in West Palm Beach, FL. I was diagnosed with Chari malformation in July, 1988 and have undergone a cervico-syringoarachnoid shunt in 1990 and decompression surgery in 2003. I take medications daily to enable me to be present for my patients. I hope that in this monthly article series that I might “bridge the gap” between patient and doctor.

September is Pain Awareness Month

Those of us with Chiari malformation and/or syringomyelia are already aware of pain and its consequences. Each of us has our “story” with pain. I had headaches for as long as I could remember. I could describe 4-5 different ones and through time many physicians had many etiologies for them—TMJ or temporomandibular dysfunction, allergic rhinitis and chronic sinusitis, dental malocclusion, etc and while I do have all of these diagnoses, treatment of them did not improve my pain. I also had pain of my neck and shoulders in a shawl distribution. This pain would peak at the end of my workday—I would have to go home and lie down. I improved somewhat with my first surgery, but slowly the pain returned. I hurt much of the time and felt that no one understood what I was going through. I became withdrawn and depressed. In November of 2002, I sought care from a rheumatologist because I thought that I might have fibromyalgia. While he stated that I did not have fibromyalgia, he validated my pain and said that I had a pain amplification syndrome. From there I was able to begin a treatment path which has allowed me to seek answers, complete my definitive surgery and return to life as a physician, wife, sister, friend, etc.

The American Chronic Pain Association (ACPA) is a national grassroots organization designed to support people with chronic pain and raise awareness of its consequences. The ACPA in conjunction with other national organizations in Partners for Understanding Pain has declared September, 2005 as Pain Awareness Month. They have enlisted volunteers to visit their US congressional representatives regarding the support of legislation which encourages the development of a national pain care policy.

On September 14, 2005 legislation will be introduced as HR 1020: National Pain Care Policy Act. This legislation, if passed, will set up a White House Conference on Pain Care and will establish the National Center for Pain and Palliative Care Research at the National Institute of Health. It will fund pain care education and training for healthcare professionals and will develop public awareness campaigns concerning pain management. Finally, the bill sets up pain care standards and mandates treatment coverage for pain care services for federally funded health care plans.

The Partners for Understanding Pain have been instrumental in developing HR 1020 and finding a sponsor for the legislation. Now support is needed for moving the bill through the laborious legislative process. An advocacy guide to support the legislation is available online in pdf format at www.theacpa.org

Key messages about pain (taken with some modifications from their advocacy guide) is included below:

•  Pain is a major health issue.

  * Pain is the number one cause of adult disability in the United States and affects one in three people or about 50 million Americans.
  
  * Unmanaged pain can slow the rate of recovery for surgical patients and affects the quality of outcomes.
  
  * 34% of survey respondents live with ongoing pain.
  
  * Most physicians receive only a few hours of formal training in pain management.
   

• Pain is a major economic issue.

  * Pain costs $100 billion annually in lost workdays, medical expenses, and other benefit costs.
  
  * Skyrocketing healthcare costs leave many unable to receive treatment.
   

• Pain is a major social issue.

  * Long term, unmanaged pain can cause people to withdraw from family and friends and leave them unable to care for children, hold steady jobs, and at times even face a personal future.
  
  * Pain has an impact on the fabric of society well beyond the individual, effecting his or her spouse or partner, children, family and community.

If you are interested in learning more about chronic pain and/or ensuring that this legislation is considered by your congressional delegate, please visit their website www.theacpa.org . Review the materials and let your representative know how pain has affected your life. You may look up your representative at www.house.gov/writerep
 

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