Chiari malformation, Ehlers-Danlos syndrome, and Syringomyelia —
Second Opinions, Being Creative, and Recognizing that Each Patient is Different
By Madeleine Kates
Chiari malformation and associated conditions including Ehlers-Danlos Syndrome and Syringomyelia were recently the focus of a medical conference held at Buffalo’s Hyatt Regency that drew neurological medical experts and surgeons from around the world. Hosted by the nonprofit research foundation Column of Hope, the goal of the conference was to increase awareness for these rare neurological conditions that are largely unknown in mainstream medical communities. This makes it a challenge for affected patients trying to seek medical advice, especially in emergency situations.
The majority of the week-long conference centered around educating medical professionals. However, the final day was open to patients, families, and caretakers who were able to have their questions answered by these experts. The conditions discussed mainly focused on the head, neck, brain, spinal column, and nervous system, providing a great deal of information to this special patient community.
One important take-away from this expert panel that would benefit any patient, no matter their medical status, is the idea that seeking second, third, or multiple opinions should be encouraged and celebrated. The experts urged patients to consider and discuss treatment ideas with more than one physician, especially before moving forward with medical decisions that may involve complex care, surgeries, or pharmacological interventions. This advice, coming from such highly-regarded professionals, spoke volumes about how important it is for patients to take initiative for their healthcare with all of the resources available to them.
This recent shift within the past decade of the relationship and power between patients and their health care providers has unfolded with advances in technology and a wealth of readily available information. Patients are now encouraged to read up on their medical conditions, as well as inquire about anything they do not understand or feel comfortable with.
The final piece of information that made a significant impression on me at the conference is the idea that there are no magical treatments that work every time for difficult conditions. Treatment for extremely challenging health situations should be adapted and centered around each patient, instead of comparing treatments and results for those with similar afflictions. What works well for one is not guaranteed to work for another, but that does not mean all hope is lost! Attending appointments with an open mind and reading available research helps to create a well-rounded professional-to-patient relationship for everyone involved and a greater chance of success.
For more information about Chiari malformation, Ehlers-Danlos syndrome, and Syringomyelia, please visit Column of Hope at http://www.columnofhope.org. Helpful resources for patients include www.nih.gov,www.webmd.com, and www.kidshealth.org.Madeleine Kates is an editor for Buffalo Healthy Living Magazine, future pediatric specialty doctor, and a patient with Ehlers-Danlos syndrome type 3, POTS, and Mast Cell Activation syndrome.