What Is Cervical Dystonia?
There must be rocks in my neck and shoulder I convey to the pain specialist, Dr. Hamid Fadavi.
Dr. Fadavi tells me he has reviewed my hospital CT and X-Rays of my neck and he did not believe I have arthritis. He has noted several blurry areas.
I ask if I do not have arthritis is the Relapsing Polychondritis the cause of my neck pain? Does the inflammation from Relapsing Polychondritis cause the blurriness on my X-Rays?
Dr. Fadavi does not answer me immediately. Instead, I find him looking intensely at my face, neck and then he asks me to stand against a wall.
As I stand against the wall, Dr. Fadavi takes several measurements of my shoulders and stance.
After Dr. Fadavi has my measurements he advises me to sit back in my chair.
Before I sit back in my seat, I anxiously rattle out my additional symptoms to Dr. Fadavi.
I proceed to tell him that it sounds crazy, but my face looks distorted. I have noticed that my face is crooked.
Dr. Fadavi does not think my symptoms are crazy. He asks me for my driver’s license.
I give Dr. Fadavi my driver’s license and show him a video I sent to a friend a day earlier.
It is apparent in the video that my jawline is pulling and jerking involuntarily.
The doctor examines the trigger points in my body. He asks me numerous questions.
Is my neck pain better or worse in the morning?
I answer the pain is better in the morning. The pain increases as the day proceeds.
Dr. Fadavi tells me he believes I have Cervical Dystonia.
Oh, What is Cervical Dystonia?, I ask.
Dr. Fadavi patiently informs me about Cervical Dystonia and the Botox treatment plan for Cervical Dystonia.
I ask is there a lab test to confirm Cervical Dystonia?
No, say Dr. Fadavi. You have to go by symptoms.
So, how bad are my Cervical Dystonia symptoms?
Moderate, the doctor, replies.
Doctor Fadavi then ask me for my phone. He tells me he is going to take a couple of photo of my face and then compare the photos to after treatment.
The doctor shows me the pictures. I face looks crooked. The photos show how muscles are pulling and spasming in my neck region.
I then ask, does the Botox treatment work?
Sometimes and the results vary, explains the doctor.
My hope for an instant cure has quickly diminished.
I then ask the doctor, What Causes Cervical Dystonia?
The doctor answers, the medical community, is not sure what causes Cervical Dystonia.
Cervical Dystonia is a rare disease that usually occurs in middle age people, forties, fifties.
Ugh, Really?!, You can’t make these stories up, all scream inside my head.
I already have the Rare Diseases Sheehan’s Syndrome, Relapsing Polychondritis and I was not seeking another rare disease.
The kindhearted doctor tells me to schedule with the front desk for Cervical Dystonia Botox treatment.
Hopefully, the Botox will stop my muscles from spasming.
It is December 23rd, and the doctor will not be in the office until January 9th. I schedule the doctor’s first available appointment, January 10th.
I am frustrated, upset and spent as I sit in my car after my appointment with Dr. Fadivo.
As I decompress in my car’s driver seat, I pull out my IPad and type into Google, Cervical Dystonia.
Here is a snippet of what I have read:
What Is Cervical Dystonia
The Mayo Clinic published:
Cervical dystonia, also called spasmodic torticollis, is a painful condition in which your neck muscles contract involuntarily, causing your head to twist or turn to one side. Cervical dystonia can also cause your head to uncontrollably tilt forward or backward.
Signs and Symptoms of Cervical Dystonia
The NORD Organization states symptoms of cervical dystonia may begin slowly and can involve any of the muscles of the neck.
The head posture in cervical dystonia can vary. The most common abnormal posture associated with cervical dystonia is the twisting of the chin toward a shoulder so that the head rotates sideways (torticollis).
Other abnormal postures include:
- anterocollis, in which the head tips forward
- retrocollis, in which the head is tilted backward
- laterocollis, in which the head tilts toward one side.
Symptoms of cervical dystonia vary over the course of the disorder.
Symptoms may temporarily worsen with stress or excitement.
Is There A Cure For Cervical Dystonia?
There is no cure for Cervical Dystonia.
Botox is usually the first course of treatment.
I hope the HypoGal Blog post, What Is Cervical Dystonia? has been insightful.