Author Topic: Your Synkinesis Experience  (Read 12395 times)

Kristena

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Re: Your Synkinesis Experience
« Reply #15 on: February 13, 2014, 06:11:22 pm »
I did buy the book and read it in one sitting! Thanks for the suggestion. It was so nice to be able to see photos of others with "crooked smiles." I have been working with a facial paralysis "expert" since early on, but of course I'm wondering now if I had done nothing if I still would have had the synkinesis? It's just so hard to be patient--you think you should be doing something to help it along. So, now my question is, do some people really do nothing and still get synkinesis? I'm afraid it was due to my "eye squeezing" exercises when my eye would only shut partially. Or when putting in eye drops (all day long), how the side of your face automatically wants to squint. Of course I'm not blaming my therapist--she really only had me work muscles that were already active--but I'm wondering if the message is truly to do as little as possible, as hard as that is. Thoughts?
2.7 cm meningioma in CPA and IAC
Retrosig June 2013 resulted in Facial paralysis and SSD
6-mo post-op MRI showed 1.0 cm remains in IAC
3-yr MRI still shows no new growth!
6/2014 Baha magnet implanted; 8/2014 magnet removed due to poor healing; 9/2014 abutment installed. Hearing fine!

KerriLynAngel

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Re: Your Synkinesis Experience
« Reply #16 on: April 11, 2014, 08:14:26 am »
had translab for approx 3 cm an in june 2005. everything that could go wrong did. i have been chasing multiple issues and great pain ever since. have synkenesis headache major eye issues and balance probs. post 18 and a half surgery, sprung csf leak etc and was in hosp 10 daysflat out and monitored every which way. 9 years post surgey still chasing for some comfort and normalcy. for the last 5 years have gotten botox injections every 3 mos, corticosteroid shots in trigeminal nerve every 2 mos and cortico steroid (kenalog) shots to eye for trochleitis every 3 mos. worked fairly well for this duration. kept pain level at about 4. annoying and hurtful but manageable. uh oh, suddenly shots arent working so... sought out  other ways to deal. went jan 14 and had gammaknife to kill part of trigeminal nerve. worked like magic and restored symetry to face but in chain reaction made eye worse and jaw/teeth (what few left) very bad. has caused serious eating problems and much pain. 2 days ago had my last bottom molar extracted (infected under jaw) to prepare for a 2 year grueling jaw grafting reconstruct. seems the prolonged use of cortico steroids detereorated the bone way too much. almost nothing left. also on steroid drops for eye. apologize for typos but, cant see too good. go may2 for the final consult with oral maxillofacial surgeon and will get my first surgey date and a clearer picture of what will go on now that the last ifected molar is gone. also still working on trying to find out what to do with eye. eye surgeon not sure if there even is anymore that he can do. panicky afraid and sooo underweight and little to no support due to lack of understanding from my significant others. i am breaking more than i was already broken. tried back when to form a support group in my area but, ana angered me by saying the numbers in my area did not warrant one at that time. contacted veda too but they did not respond back as they said they would. on the up side, went back to neuro balance therapy and am doing better in that area. dont fall as much and learned new techniques.however, after the gammaknife got 2 new sounds that occur randomly and one is so bad it knocks me on my butt literally.( always have random electronic type sounds in head since 2005) feeling for the first time very weary of chasing and thinking for the first time that maybe i should not have even had the surgery and just died in 2007 like the docs said i would. scaring myself. its all so complex and overwhelming. if someone out there knows the name of that book and author so i can get it tell me please as i am desparate for someone who understands this hell. also if any of you on the forum live in lackawanna county n.e. pa. please contact me as i would like to talk about things. desparate at this point because no understanding even after 9 years. sooo tired of chasing my own tail. anyone have words of wisdom?     

saralynn143

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Re: Your Synkinesis Experience
« Reply #17 on: April 11, 2014, 08:52:23 am »
Both an ENT facial nerve specialist and a facial physical therapist told me that some synkenesis is inevitable. But the facial nerve specialist also told me that not forcing movement too soon would minimize it. In my case, the result after 5 years is that I do not have eye problems when smiling or eating, but I do have a huge off-center chin dimple when I smile and the smile is not symmetrical. I could probably do something about the dimple with Botox but haven't investigated that yet.

MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

spgreenfield

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Re: Your Synkinesis Experience
« Reply #18 on: April 11, 2014, 09:33:20 am »
I know my eye problems are from my attempting to "make" my eye make tears.  I'm a former contact lense wearer and had/have dry eyes - too dry to easily handle contacts.  So what I would do is a sortof "squinch" of my eye, and they would produce tears.  A couple months of doing that laid the foundation for synkinesis....but it's not horribly bad - I just don't like it!  Vanity.  My family tells me it's "cute" that my eye shuts a bit at times....

Pam
Pam in South Dakota

MRI & DX on 10/17/11, 2.8 x 2.3 x 2.3 cm cystic & solid mass
Left suboccipital Surgery with Dr. Tew at Mayfield Clinic in Cincinnati on 1/10/12
SSD but no nerves cut in surgery. BAHA implant 8/2012
Facial weakness almost gone!
Acupuncture helping face
Tear duct plug on 4/4/12

Kristena

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Re: Your Synkinesis Experience
« Reply #19 on: April 12, 2014, 10:14:56 am »
KerriLynAngel, I am so sorry to hear about all your issues. Sometimes the best part of my day is taping my eye shut and going to bed.  :(  I wonder if the hospital where you had your surgery could find a support group for you. I recently received a mailing from a group for a seminar for people with various brain tumors and cancers, so it wouldn't have to be specifically an acoustic neuroma group. Hopefully they can put you in touch with someone to talk to. In the meantime, we're all here for you!

The book is called, "Hell in the Head: My War with a Brain Tumor and Other Evil Things" by David Douglas Shannon. I bought mine on Amazon.
2.7 cm meningioma in CPA and IAC
Retrosig June 2013 resulted in Facial paralysis and SSD
6-mo post-op MRI showed 1.0 cm remains in IAC
3-yr MRI still shows no new growth!
6/2014 Baha magnet implanted; 8/2014 magnet removed due to poor healing; 9/2014 abutment installed. Hearing fine!