Ramsey Hung Syndrom email update to my friends on 8/14/19

Dear Friends,

I am writing with an update on my medical situation.

It seems the diagnosis given to me in the ER on 6/15/19 of Bell’s Palsy was wrong.  I went to an Ear Nose Throat doctor (ENT) recently and he changed my diagnosis to Ramsey Hunt Syndrome (RHS).

Over the past 9.5 weeks, I’ve been to the ER, my Primary Care Physician (PCP) 4x, my chiropractor weekly, 2 different acupuncturists 4x each, an orthopedist, a physical therapist and a mental health therapist.  I’ve had a CT scan of my head with contrast, a MRI of my brain without contrast, two blood draws and x-rays of my spine.  I make an average of 5 phone calls daily to my insurance, doctors and specialists.  It has been a lot of work and I’ve spent a lot of time to manage my health care this summer.  Meanwhile, I have not been to work since 6/14/19 and I admit I really, really miss my job.

From the very beginning, I’ve had severe pain with this medical situation.  My first symptom was pain deep in my left ear.  I’ve continued to complain of the intense pain in my left skull, left ear, left face and left neck to the different health care people I’ve seen.  The first acupuncturist said, “This is the worst case of Bell’s Palsy I’ve ever seen.”  My chiropractor said, “This is the most complicated case of Bell’s Palsy I’ve ever seen,” and referred me to a Neurologist.  My PCP said last week on 8/6/19, “I don’t know why you have so much pain and why it’s lasting so long,” so he referred me to an ENT and a Neurologist.  The orthopedist referred me to a Neurologist.  My research about Bell’s Palsy does not reference pain nor does it say that the illness extends down into the neck.  I have an upcoming appt w/ a Neurologist. 

Every health care professional has talked about my immune system and that it must have been weak and compromised.  I think that makes sense since I got really, really sick 4x while I was 37 years old and then my house got really sick this past Spring with 4 water leaks and two room remodels in the basement bedroom and upstairs bathroom, which caused me a lot of stress. 

I’ve learned about a new kind of pain through this experience.  I cannot find an accurate word to describe the pain I’ve endured.  Nerve pain is a whole different category of pain that anything I’ve ever experienced and I’ve broken my tailbone 2x and given birth naturally two times.  The words I’d use to describe the pain from this medical situation are debilitating, crippling, excruciating, terrible and awful.  I’ve said my skull pain feels hot, sharp and like my brain is burning.  My left neck hurts so much and feels so tight.

After just a few sentences of sharing my story with the ENT, he interrupted me and said right away, “You don’t have Bell’s Palsy.”  My eyes opened wide.  He said, “You have Ramsey Hunt Syndrome.”  I finished my story and he said that Bell’s Palsy is only facial paralysis and that Ramsey Hunt Syndrome also has facial paralysis but also has severe pain that encompasses everywhere that the Trigeminal Nerve covers, which is the left skull, left ear, left face and left neck (or the right side). 

So, here is what I learned from him and from my research online-

-Bell’s Palsy can last 2 weeks to 6 months.  RHS can last 2 months to 2 years.
-Bell’s Palsy may be caused by the herpes virus.  RHS is caused by the varicella virus.
-Bell’s Palsy is rare.  RHS is very rare.
-Most health care professionals have heard of Bell’s Palsy.  Usually only ENTs know to diagnose RHS.
-Neither are contagious. Both should go away.
-Diagnosis of both Bell’s Palsy and RHS has the same immediate medicines, 5 days of steroids and 10 days of antivirals, that I took.  RHS though includes nerve pain medication from the get-go normally. 

Therefore, yes, if I had been given the proper diagnosis of RHS in the ER on 6/15/19, then I could have started the nerve pain medicine right away and not experienced the deep levels of pain and fear over the past 9 weeks.  I would have known to expect the pain and where I would feel it.  I’ve been so scared wondering why I’ve had so much pain and what was wrong in my neck, but now I understand that RHS is painful and covers the Trigeminal Nerve area.  However, the past is in the past and we cannot change it, so I can just surrender now to taking this nerve pain medicine to manage this RHS until I get better.  Honestly, I feel relief with this RHS diagnosis because I understand what is happening to me now.

I’ve realized how crazy viruses are too.  We can’t control them.  Viruses live in many of us and can cause the most unheard of illnesses to some. 

Thus, a basic way to explain what I have, according to the ENT, is Shingles in my inner ear that caused damage to my Trigeminal Nerve, which resulted in facial paralysis and extreme pain. 

While I have better facial movement and can smile & show my teeth now and move my eyebrows, my left check is still quite swollen and my left eye has not improved much and so I have to take good care of it so that it does not dry out & get damaged.  I also need to be careful of the wind since that hurts my ear and eye.  So, I look pretty normal and I do not feel normal, yet. 

I’ll end with some lessons I’ve learned from a book I am reading for my work’s Book Club called Dare to Lead by Brene Brown (I highly recommend this book and this author).  While explaining empathy and living into our values, she said her mom taught her something growing up: Show up for people in pain and don’t look away (p. 192).  Um, yes.  She also has an exercise that helps people define their two top values in life and how to live into them, so mine are LOVE and GRATITUDE. 

Thus, thank you for the love and support given to me with this medical situation since mid-June.  My summer of 2019 has sucked, that’s for sure.  Being 37 was hard, that’s for sure too.  My birthday was just 8/12 and I pray so hard and have hope that being 38 will be a year of healing, resilience and tranquility.  I am so grateful for all of you who have loved and supported me after the Bell’s Palsy diagnosis and now with this RHS diagnosis.  I love you all back so much.  I’ve appreciated the calls, texts and emails, the meals, visits and flowers, the prayers, offers of help and the books.  Thank you from the bottom of my heart and know that my heart is warmed and overflows with gratitude and love from and for you all. 

May we all have peace,

Susan

PS- Since people have asked what they can do for me, I will share that I really like getting snail mail.  I’d love a letter from you, maybe with a bumper sticker.