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 is apparent I am wrong when my neck caves into my shoulder several months ago. When I write caves in because it's hard to convey but the left side of my neck collapses.

Before I went to sleep I had a painful throbbing neck pain. Without any relieve I applied several self-help methods to relieve my neck pain.

  • I soaked for over an hour in a bathtub filled with Epsom 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 are not successful.

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

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

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

The Emergency Room doctor does not know the trigger to my neck collapsing. A CT of my neck is 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  trigger the collapse of my neck. He honestly replies I do not know, maybe.

I like a doctor who is so forthcoming.

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

It is not until a Pain Management Specialist; Dr. Hamid Fadavi comes to see me that I feel hope.

Dr. Fadavi quickly surmises my condition and orders injectable steroids.

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

Minutes after the injections, I am able to turn my neck and lift my head.

The nurse in my room  is surprised by my rapid improvement.

Like myself, the R.N. is in amazement of Dr. Fadavi's medical talents.

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

I believe Dr. Fadavi injection of steroids into my neck because steroids are usually the first line of defense when treating a serious Relapsing Polychondritis flare. 

Because of Dr. Fadavi medical skill, I am 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 appear to discount or pass over my neck symptoms.

My experience as a Zebra patient makes me believe that doctors are very concerned life threatening conditions. However, non-life threatening conditions may be passed over.

I understand the doctor mindset. My HypoGal body is frequently in the rare disease category.

My medical conditions are what some doctors have only read about but not personally treated.

So, I am not upset to learn, Dr. Fadavi thinks I have Cervical Dystonia.

I am 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 is frustrating to have most of my pain medically dismissed as Fibromyalgia.

I agree, I have Fibromyalgia. I also know that the stabbing, mind-numbing pain that resonates from my neck is not Fibromyalgia. I use to think maybe, it is Relapsing Polychondritis, but now I know 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 driver's license 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. His quiet demeanor worries me as 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, suffer from depression or perhaps I am 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 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 cure for Cervical Dystonia? Is there a test to confirm Cervical Dystonia? What is the treatment plan for Cervical Dystonia? Can Cervical Dystonia progressive worsen over time?

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

It is clear from the photos that my face looks distorted and my face is twisted! Unbelievable! 

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

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

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

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

The doctor uses an ultrasound machine to locate the areas in my neck and upper shoulders that need Botox treatment.

The ultrasound machine that should be quiet as it slides over my neck and upper shoulders is buzzing with noise. 

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 in my spastic shoulder blades.

Dr. Fadivo informs me that the Botox will continue to spread for the next couple of weeks.

The doctor tells me that if I have trouble with shortness of breath or swallowing to call him immediately.

I leave Dr. Fadavi's  office with a follow-up appointment scheduled for next month.

It has been six days since my Botox injections for Cervical Dystonia.  I am finally gaining some energy.

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 Botox treatment is insightful. 

Life with a rare disease can be challenging, overwhelming and frustrating. I hope  HypoGal Blog shortcuts to living with a chronic illness helps you or your loved one. 

My Best,

Lisa a.k.a HypoGal 

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You may find What Is The Best Treatment For Cervical Dystonia helpful.