Friday, February 08, 2019

My Battle with Ramsay Hunt Syndrome (Years 2 + 3)

If you are not a regular follower, please check out Part 1 of my story HERE

ONE YEAR MARK: Feb 2019 (Day 365): Wow, I can't believe it has been one year.  I remember that day clearly.  I went to the hospital thinking I was having a stroke. I saw so many doctors; underwent a plethora of tests (xrays, CT-scans, MRI, blood work, urinalysis); and received many diagnosis-es (Strep, Bell's Palsy, Impetigo, Mastoiditis, Vertigo, Shingles).  

But let's fast forward.  I've spent the past few days reflecting on my year with RHS.  I have experienced a range of emotions -- fear, anger, frustration, loneliness, sadness and joy.  It would be easy to write about my sadness, but I won't do it. Instead, I chose to look for the good in my journey.  So I focus on  joy.  Joy that it was not a stroke or brain tumor; and joy for the friends and family who rallied behind me this past year. (Look for the good in every situation -- this was key to my journey!)

So how am I doing physically?  
  • Facial paralysis is still around. It's much better than a year ago, but I still have limitations. I am unable to puff out my checks.  I don't have a full smile (but can rock a smirk!). I can't correctly pucker my lips to whistle.
  • Synkinesis (tight face and spasms) at times, but medical Botox injections help.
  • At times, I dribble (more when I am eating or drinking; or talking too fast).
  • Occasional vertigo.
  • Slight Nystagmus in my right eye. 
  • Elevated eye pressure (which may or may not be related; I see a Glaucoma specialist soon).
  • I had my one-year follow-up MRI on Monday (4 days ago) and I still have no results.  I called my ENT and the status is still "pending".  The MRI with contrast will let us know if there is still inflammation in my facial nerves. 
One more thing I wanted to add. I honestly thought I would be DONE with Ramsay Hunt Syndrome by now. An eNog test done in the beginning showed a good prognosis, plus everything I read stated a recovery time of 6 to 12 months.  But, here it is, one year later, and I still am on this crazy journey.

Comparison: Day 14 vs Day 365

Results from one-year MRI shows that I have improved but that I am also healing. ENT was pleased with these results.  Said he wanted to test my hearing again soon.

Day 317 (12 months +1 week): I've been really tired the past week.  On top of that I have started having some vertigo again! So I headed to my primary care.  I could possibly be having a relapse so decided on a 7-day round of anti-virals and a referral to an Infections Disease doctor. We discussed the possibility of me getting the shingles vaccine soon. 

A: Straight face, B: Smirk, C: Full smile, D: Trying to make "fish lips"

Day 387 (12 months + 3 weeks): Many doctor appointments this week. I got good news and bad news.

One year Ophthalmology update:
  • Good news. Peripheral vision and optic nerve were normal. Great for my age.
  • Meh: Recheck eye pressure in three months. (Pressure was lower today than it’s been the last couple of visits, which is good news, but it could still be lower.) He debated putting me on Glaucoma eyedrops. The concern is that my eye is already so dry (as I still don’t blink consistently) and he’s worried that it could be more harm than good.
  • πŸ‘ŽπŸΌSpeaking of dry eye...Since my punctual plug keeps falling out, and my affected eye is so dry, I should consider a permanent solution. (Eyedrops and Gels are not cutting it). I will probably get eye cautery done. It’s a quick in office procedure where they give a shot of anesthesia into the lower eye lid and then permanently close off the tear duct.

ENT / Audiologist Update: 
  • πŸ‘ŽπŸΌ Hearing test showed I still have some (mild) hearing lost in right ear. 
  • πŸ‘ŽπŸΌ Grade 3 facial paralysis is more than likely permanent. Little chance for full recovery. (Not what I was expecting to hear!) 
  • πŸ™πŸ» Follow up with infectious disease doctor to discuss further treatment with antivirals.

18 months later (Aug 2019). Botox seems to work great but you can definitely see the affected eye is smaller than my normal eye. Still can't give a full smile so I give a "smirk" in my pics. Most annoying, I now get nerve pain under my ear near the jaw bone. It is very intense and last about 30-seconds.  It happens once or twice each day.  (This went on or about two weeks, very painful.)


20 months later (1 year + 8 months) Oct 1, 2019. I took these pictures before going in for my medical Botox.  It amazes me how much smaller that eye looks when I am due for Botox . I am also amazed at the tightness in my neck. 

I have made an important decision.  I am going to TRY to get a consultation with a plastic surgery specialist at John Hopkins in Baltimore next year. A friend of a friend recently had facial nerve surgery at John Hopkins, and they were able to get insurance to cover all expenses!  I know that it will be a long process and it may not happen in the end, but it is worth some phone calls. 

 Smirk vs. Full Smile vs Pucker (18 months post-RHS)



Update: These pictures were taking around the three year mark (full smile vs little smirk).  I still have grade 3 facial paralysis with Synkinesis When photographed, I tend to give a little smirk so my eye doesn't shut.  I was getting medical Botox every three months, but decided to stop it for a bit. 

Also, at the three year mark, I was having a vision problem called Vertical Heterophoria.  It seems my eye muscle has moved and I was no longer seeing things in alignment.  READ MORE HERE.

Want to see more pictures of my recover from Ramsay Hunt Sydrome? Please reach out to me on Instagram at @YellowBeadsAndMe