For most people, getting the life-saving surgery they need is as easy as going to the nearest hospital. For people with Ehlers-Danlos syndrome, unfortunately, extensive travel is typically necessary to get life-saving surgeries. There are only a handful of doctors who are able to treat EDS and its common co-morbid conditions of Chiari malformation, craniocervical instability (CCI), and postural orthostatic tachycardia syndrome (POTS). Here's what you need to know if you or a loved one has been diagnosed with EDS, Chiari, and CCI.
The glue that binds but doesn't
EDS is a genetic condition in which the collagen in the body's cells is unable to do it's job of being the glue that holds everything together. It can lead to Chiari malformation, which is when the brain sinks into the spinal cord, and craniocervical instability, which essentially is when the head slips off of the spine. EDS patients also typically have POTS, which is when your blood pools in your lower extremities when you get up from sitting or lying down, which causes your blood pressure to drop substantially. This sudden drop in blood pressure causes the heart to speed up as it attempts to force the blood back up.
As you can imagine, these medical conditions are serious and require extensive care when traveling. Any minor movement can cause someone with these conditions to have an episode of temporary paralysis or severe muscle contractures. They may lose consciousness and stop breathing. Most people with these co-morbid conditions wear neck braces when they ride in cars, trains, and planes.
Air ambulance for extensive travels
Due to the seriousness of the combination of debilitating conditions, it is highly recommended that patients never travel alone. When extensive traveling is necessary to see one of the few top surgeons who treat these conditions, air ambulances are preferred by surgeons and patients alike. That way, the travel can be done as quickly and as safely as possible. Patients can have the medical support they need while in flight, particularly to do things like monitor their vital signs, administer a respirator if the patient stops breathing, and to provide medication to reduce the intracranial pressure that often accompanies Chiari-related headaches.
If you have a complex case and are in need of emergent surgery by one of the top EDS surgeons, contact an air ambulance to find out what they need from your medical team and how to get your health insurance to cover the costs.