My Experience

My Experience
When I was eleven years old, I was misdiagnosed with Chiari Malformation based upon my years of debilitating headaches and weird neurological symptoms. My family has a history of Chiari Malformation and Ehlers-Danlos, so it was easy to assume that the doctors were right. However, when I was seventeen, after a referral by Dr. Francomano (an Ehlers-Danlos specialist), Dr. Henderson changed my life by correctly identifying an unstable disc in my vertebrae. This instability was caused by Ehlers-Danlos, which weakened the connective tissue of which the disc was made. After a few months, I had surgery to correct this issue, and now I am a new person, free from the bounds of pain. I am still cautious, as my other connective tissue is equally fragile and I don't want to cause any more injuries to my spine, but I am not constantly under the weight of headaches.

My experience with misdiagnosis and then a wonderful treatment has given me the hope that others can similarly find the right answer for them and get the treatment that will free them from pain. For this reason, I have written this blog, documenting my journey and doing what I can to inform others and encourage them.

I have included the list of the symptoms I experienced before surgery. Those of you who have many of these symptoms, please consider the possibility of a damaged vertebral disc, and consider visiting Dr. Henderson in Bethesda, Maryland. He won't give you a cookie-cutter diagnosis. If Chiari is the issue, he will find it, if not, he will do his best to find the true cause. Also, please keep in mind that these symptoms can be caused by many different illnesses, including Chari and a vertebral instability, and I do not claim to offer diagnostic authority in any way.

Pre-Surgery Symptoms:

Headache
Dizziness
Difficulty sleeping
Neck pain
Numbness/tingling in arm, hand
Fatigue
Nausea
Shortness of breath
Blurred vision
Tinnitus (ringing in the ears)
Difficulty swallowing


Depression
Balance problems
Memory problems
Leg/foot numbness
Hoarse voice
Chest pain
Facial numbness
Anxiety
Arm pain
Abdominal pain
Photophobia (sensitivity to light)


Tachycardia (rapid heart rate)
Vomiting
Double vision
Word-finding problems ( when you just can't come up with the...)
Blackouts
Apnea (involuntarily stopping breathing)
Vertigo (when it feels like the world is spinning; in other words, not a good time to take a sobriety test)
Loss of peripheral vision (sometimes temporarily)
Nystagmus (involuntary eye movements; when the eyes randomly jump, often to the left or right)
Earache
Nosebleeds

Thoracic pain (pain in the area around the ribs and the sternum)
Hypotension (low blood pressure)
Waking up choking
Leg pain
Palpitations (irregular or especially rapid heartbeats)
Abnormal gag reflex (it can be too sensitive or not sensitive enough)
Face pain/tingling
Electric-shock-like sensation (this one is new to me)