new areas of Synkenisis at 10 years post op

[matti]

This year marks 10 years post op for me and thought I'd share some interesting news.

In December of 2007 I began feeling a fluttering sensation within my AN side ear canal. Also what felt like pressure and pain, similar to that after a plane flight. It actually reminded me of the symptoms I had shortly before my AN diagnosis in 1998. I saw my primary who thought it might be from allergies (here we go again) and told me to take decongestants. I gave it 3 days and no help. Didn't go back to the primary, instead headed straight to my AN surgeon who immediately ordered an MRI to rule out a regrowth. I have yearly MRI's with the last being 10 months prior to this one.

New MRI showed no regrowth....YEAH!!  My AN surgeon then told me that what I am experiencing is more synkenisis. I have a few areas of synkenisis which set in within the first year recovering from facial paralysis and has remained such, until now.  My surgeon was quite surprised and astounded as he has never seen this in anyone past the 4 to 5 year mark. He consulted with other AN surgeons at Stanford who were surprised as well. 

So what has basically happened is that a branch of the facial nerve has now linked up with a tendon next to the ear drum. I asked about Botox helping to relieve the problem, but he advised against it. Again he sees this often with patients at the 2 to 5 year mark and does a quick (30 minute) outpatient procedure. It involves going in through the ear canal and very gently lifting the ear drum and snipping the tendon. 

So along with my 24/7 tinnitus, I now add the sound of a helicopter to the mix     Touching certain areas of my cheek and forehead will increase the fluttering feeling and sound.

Just wanted to share this and wondering if anyone else is experiencing the same.  Goes to show that the facial nerve is an amazing and wonderous system that knows no time limits (or boundaries)

Cheryl

[Palace]

Hello Neighbor Matti/Cheryl,


Congratulations on your ten years!  We should get together and celebrate.

My 18 mo. post-Cyberknife is at the end of this month!  (one year and a half year)

I get the fluttering sensation on my ear canal going around in the right side.  (AN side)  It doesn't happen often.  You refered to the pressure and the pain but, thank goodness---that went away for me awhile after CK.  Yes, I did have the pressure once since CK but, it was due to severe allergies and fluid in my ear.  (right side)  Heavy decongestants are needed and I don't mean "light ones."  (prescription and strong which as you noted, doesn't always work)

That is wonderful about the "no regrowth" on the latest MRI.  So, you were told (Stanford?) that you have a few area of synkenisis.  I'm interested as I too, am with Stanford.

I personally, would get more opinions before having a doctor go through the ear canal and lift the ear drum and snip the tendon.  I have a helicopter sound occasionally.  I don't know if it's the same sound you describe.  How can we tell?  Who knows?

Cheryl, take a look at the "sign language" topic again---maybe you are interested in going to the boardwalk with me to meet with Mo and talk, "sign."

I'll call you soon.  Lorenzo has his share of sounds in his ear, as well.  I know you're a friend of Lorenzo, as well.  (another Stanford patient)  I'll alert him to read your post on this subject and maybe he has some input.

Thank you for sharing your concerns on the forum and we all learn from what others experience.



Palace

[Mary 117]

Cheryl,
Thats really interesting. Thanks for posting. I am at the 3 year mark and in the last month I have had the symptoms that you describe. Pressure, helicopter/fluttering sounds. Like you, it was making me really nervous. Now I at least have some information and can talk with the doctor about it.

Thanks for the help.
Mary

[4cm in Pacific Northwest]

Cheryl,

It is fascinating that synkinesis can happen so many years after the fact. Wow. It is also interesting that often the neuro muscular facial retaining therapists and the physicians have different numbers as to how long nerves take to re-generate. The physiotherapists say that nerve growth can still happen far later than what the surgeons generally say.

Thanks for sharing your story with us.

Daisy Head Mazy