My Story With Cervical Dystonia

Over the decades my HypoGal body is in constant battle with different chronic diseases and conditions.

One condition that increases with time is the soreness of my neck and upper shoulder. There are some days where I feel my neck and shoulders are screaming out in pain. The pain is so intense that it prevents me from being semi-productive and my brain fog increases.

I try to relieve the muscle spasms that resonate through my neck and upper shoulders with massage therapy.

Massage therapy offers me quick, momentary relief but the throbbing pain in my upper shoulders and neck returns within a day or so.

I frequently repeat my massage therapy. I am fortunate that I have found a no frills massage studio near my home that offers fabulous price points and masseurs with magic fingers.

Besides the massages, I use the Thera Cane almost daily to try to break up knots that seem stacked up my neck.

I have also found that sleeping with a baseball at the bottom of my skull helps my neck to feel stable.

For years it was my belief the soreness in my neck, and upper shoulders were from Fibromyalgia. I was wrong.

It was apparent I was wrong when my neck caved in several months ago. When I write caved in because it ‘s hard to convey but the left side of my neck collapsed.

I went to sleep with a painful throbbing neck. Before I went to sleep, I tried several self-help methods to relieve my neck pain.

• I soaked for over an hour in a bathtub filled with Epson Salt.
• I stood against a wall pressing a baseball behind my neck.
• I iced my neck. I often use frozen peas to ice my neck. The frozen pea bag is flexible, and the pea bag can reach small areas.
• Lastly, I applied heat to my neck with the use of a heating pad.

My home remedies were not successful.

I awoke with the left side of my neck out of commission. After several attempts, I was able to slide myself out of bed. However, standing up was out of the question.

Each step I took, I was in a hunchbacked state with my body leaning to the left.

Without hesitation, my husband drove me to our local Emergency Room.

The Emergency Room doctor did not know what triggered the collapse of my neck. The CT of my neck was unremarkable (no news). As the Emergency Room doctor reviews my lengthy charts, he quickly decides to admit me into the hospital.

I ask the Emergency Room doctor if he thinks my rare disease, Relapsing Polychondritis could have triggered the collapse of my neck. He replies I do not know, maybe. I like a doctor who is so forthcoming.

Like my numerous hospital stays before, hospital doctors did not know what to do with me the Zebra patient. The different medical specialists come and go from my room.

It was not until a Pain Management Specialist; Dr. Hamid Fadavi came to see me that I felt hope.

Dr. Fadavi quickly surmised my condition and ordered injectable steroids.

Several hours later with an R.N. at his side and a signed waiver from me, Dr. Fadavi was injecting syringes of steroids into the sore, tender areas of my neck.

Minutes after the injections, I can turn my neck and lift my head. The nurse is surprised by my rapid improvement. Like myself, the R.N. was in amazement of Dr. Fadavi skill.

With the immense joy of being able to move my neck, I quickly blurted to Dr. Fadavi that he has magic fingers.

I believe Dr. Fadavi injected my neck with steroids because steroids are the first line of defense when treating Relapsing Polychondritis.

Because of Dr. Fadavi medical skill, I was able to leave the hospital the next day.

After several follow up treatments with Dr. Fadavi, he notices that I have a medical condition that so many other doctors had missed; Cervical Dystonia.

I have sought help from numerous medical specialists about the tightness, muscle spasms in my neck and upper shoulders. I have told doctors that I feel like I am walking around with ice pick in my neck.

Sadly, numerous medical specialists seem to discount or pass over my neck symptoms.

My experience as a Zebra patient is that doctors are very concerned about my life threatening conditions but other non-life threatening conditions may be passed over.

I understand the doctor mindset. My HypoGal body is frequently in the rare disease category with medical conditions doctors have only read about but not personally treated.

So, I was not upset to learn Dr. Fadavi thought I had Cervical Dystonia. I was relieved to have a diagnosis.

If you read about Cervical Dystonia in Medical Journals, every journal states Cervical Dystonia is a painful condition.

I agree, my Cervical Dystonia is painful, very painful.

It has been frustrating to have most of the pain medically dismissed as Fibromyalgia.

I agree, I have Fibromyalgia. I also knew that stabbing, mind-numbing pain that resonated from my neck was not Fibromyalgia. I thought maybe, it was Relapsing Polychondritis, but now Cervical Dystonia makes sense.

During my appointment with Dr. Fadavi, he asks me to sit naturally, and he takes several photos of my face with my phone.

He then asks me for my driver license. Dr. Fadavi wants to look at my photo.

After he looks at my photo, Dr. Fadavi asks me to stand against a wall. He proceeds by taking several of my measurements and asking me to complete a battery of physical tests.

Once Dr. Fadavi completes my physical tests he moves to sit down in a chair next to his computer. He had a quiet demeanor has he types away on his computer keyboard.

Several minutes later Dr. Fadavi asks me to smile. Feeling a bit self-conscious I smile and wonder why?

Dr. Fadavi then requests that I open my mouth, wide open.

My curiosity intensifies as different scenarios run through my mind.

I open my mouth.

As Dr. Fadavi peers into my cross bite, he asks me if I have TMJ issues.

I answer, no.

However, I mention to Dr. Fadavi that my face looks distorted on a video I sent to a friend yesterday. I feel silly saying my face appears like it is out of alignment.

When I hear my voice say, my looks distorted, I instantly believe that Dr. Fadavi is going to quickly assume that I am just anxious, depressed or perhaps delusional.

Instead, Dr. Fadavi ask me if I still have the video. I share the video with Dr. Fadavi.

After Dr. Fadavi reviews my video, he sits down in front of his computer and then again clicks away. A few seconds later he turns to me and says, I believe you have Cervical Dystonia.

Immediate I have numerous questions about Cervical Dystonia. I ask the doctor, What is Cervical Dystonia? Is there a test to confirm Cervical Dystonia? Is there a cure for Cervical Dystonia? What is the treatment plan for Cervical Dystonia?

Kind hearted doctor Fadavi addresses my questions and concerns with great patience and compassion.

As Dr. Fadavi shows me, the photos of my face he has taken with my phone there is little doubt in my mind that he is correct with my new diagnosis.

My face, particular my jaw/ chin area is twisted in each of the photos. I am almost in disbelief as I look at the pictures of my face.

I ask Dr. Fadavi how he would rate my case of Cervical Dystonia. He replies, moderate.

Dr. Fadavi goes on to inform me of my options to reduce the muscle spasms in my neck and shoulders.

The first line of treatment with Cervical Dystonia is Botox. I eagerly agree to try the Botox treatment.

I come back to Dr. Fadavi’s office a couple of weeks later to have Botox injections.

The doctor uses an ultrasound machine to locate the areas that need treatment.

The ultrasound machine that should be quiet as it goes over my neck and upper shoulders is buzzing with noise as Dr. Fadivo places the machine near my spastic muscles.

Dr. Fadivo tells me the buzzing noise is from my muscles spasms.

With the aid of his nurse, the doctor injects the Botox into my neck, shoulders and left jaw.

I notice an immediate improvement. Dr. Fadivo informs me that the Botox will continue to spread for the next couple of weeks.

He reminds me that if I have trouble with shortness of breath or swallowing to call him immediately.

I leave his office with a follow-up appointment scheduled for next month.

It has been six days since my Botox injections. I am finally gaining some energy. The days following my Botox injections I was completely wiped out.

My neck and shoulders are still in pain, but I notice the improvement. Hopefully, each day the pain will decrease.

I hope my story with Cervical Dystonia has been insightful. Below you can find answers to Cervical Dystonia questions. 

What Is The Best Treatment For Cervical Dystonia?

At this time there is no cure for cervical dystonia and the best treatment options for Cervical Dystonia are limited.

For some patients affected with Cervical Dystonia, find the condition can resolve without treatment. However, long remissions of Cervical Dystonia are not common.

The Injection of botulinum toxin into the affected muscles often reduces the signs and symptoms of cervical dystonia. Surgery may be appropriate in a few cases.

What Are The Symptoms Of Cervical Dystonia?

Cervical dystonia causes abnormal muscle contractions in the neck.

Abnormal neck muscle contractions can cause head and neck twisting (torticollis) or the neck being pulled forwards (anterocollis), the neck contacts backward (retrocollis), or the neck contracts sideways (laterocollis).

• Neck muscle contraction increases during stress
• The symptoms of Cervical Dystonia increases during the day
• Symptoms of Cervical Dystonia improves with restA person with Cervical Dystonia may feel improvement when they apply pressure on the chin or different sides of the neck.

Doctors may mistakenly diagnose Cervical dystonia as:

• A pulled neck
• Effects of head trauma
• Slept in a poor position
• Muscle strain
• Psychological Issues
• Fibromyalgia

General Practitioner Doctors often refer patients with the above symptoms to a Neurologist.

A patient with Cervical Dystonia Symptoms is usually referred to a Neurologist to rule out Parkinson’s, Ataxia, and Multiple Sclerosis (MS).

Another sign for a medical specialist to indicate a patient may have Cervical Dystonia is:

• Talk therapy does not improve symptoms
• The patient still has symptoms with pain killers
• Cervical Dystonia symptoms do not resolve over time
• A patient feels relief with sensory e.g. The patient places their finger on their chin or on areas of the neck where the pain radiates.
• A medical specialist witnesses the patient’s neck movement when the patient is not aware of being observed.

Resources:

https://rarediseases.org/rare-diseases/cervical-dystonia/

http://www.dystonia.org.uk/index.php/professional-research/types-of-dystonia/cervical-dystonia

 

Please, Like, HypoGal on Facebook.