Naturopathy

[Sonia in Sydney]

This post is a little bit of a vent as well as a call for some advice about alternate treatments for facial paralysis.

I am 6 weeks post AN surgery and suffered facial paralysis to my right side which i am hoping is temporary (though my doctor reminded yesterday that 50% of patients do not recover, something i didn't need to hear for my frame of mind right now). My doctor was extremely positive during my hospital stay and I would go as far as saying he exuded confidence when he told us he had not damaged the facial nerve but it was "bruised" post surgery and need some time to heal. Back in his office for my 6 week check up yesterday, he became Dr "facts and figures" again and my hope was shot. I feel sad about the prospect of never looking like i once did. About my 2 young kids never seeing mummy with a smile. Trying hard to bring back positive me.   

My husband came home tonight and gave me the name of a naturopath who has had success in treating cancer patients and could possibly help with the paralysis. The naturopath is not cheap but at this stage, i am very open to anything that could improve my face and return me to my old self.

Has anyone had experience or success with a naturopath?

I am currently having acupuncture but have been told that studies prove that this does not help with recovery of paralysis. I have continued in any case as i do find it allows me to rest and focus on me if only for that short period of time every week.

Any thoughts or advice on above very appreciated.
Sonia

[Mimispree]

Hi Sonia:

We're in the same exact boat:  My surgeons said the same thing.  However, I was told that at 12-months I should get an EMG to see if the facial nerve is working at all.  After doing research on this forum, I have learned to wait at least a year for signs of healing.  Some have suggested waiting up to two years.  However, there is an 18-month window after surgery to have the 12/7 nerve graft.  So I don't quite understand what some people are posting. 

Anyway, having an EMG at 12-months post-op is the next step. 

I'm sure your kids can feel your smile, even if it's temporarily a half-smile.

Michelle

[evestew1]

Hi Sonia,
we're in the same boat - I'm 6 weeks out with facial paralysis and am curious if there is an optimal time to try alternative methods like acupuncture or naturopathy.  The western  medical docs all say to wait and let the nerve heal. My neurologist said that acupuncture couldn't hurt but that since it is expensive it was likely not worth the money.  But he also said that while there is no "proof" it can help nerves heal better/faster, he allowed maybe, possibly it would work for me. Very curious what other people have to say on this topic.  Hang in there!
Eve

[mandy721]

Facial nerves heal very, very slowly.  It is extraordinarily hard to be patient when one's face is involved.  My husband had a beautiful smile before his surgery, but he came out of surgery with the  Grade 5 facial paralysis. He looked like he had a stroke, he had difficulty swallowing, his right eye didn't close, and was totally numb on the right side of his face. 

I have shared his experience over the years, but it is worth repeating.  At about 9 months, his surgeon felt like there was no possibility of  improvement, and suggested reanimation surgery.  Ken's recovery from resect was difficult, and he adopted the policy of no more surgery unless it was a matter of life and death.  As bad as his face was, he didn't consider surgery. 

Through this discussion board we learned about Jackie Diels. By that time, he was suffering from medical care fatigue, and felt nothing would help.   I contacted her and she advised that it was still too early to assess if neuromuscular retraining would be helpful for Ken.  At about one year out, she asked for photos of Ken's smile and face in a number of different poses.  She could see signs of the nerve regenerating; we couldn't!  After Ken's first session with her at about 18 months, there was noticeable improvement. He had a second 2 1/2 day session with her the following year  with her in Madison.She  devised a series of exercises based on the way the nerves were working. Over the years, she has modified his exercises as he has progressed. The changes are measurable, as she takes photos each session, and we can see the difference year to year.  Working with her was life changing. Today, if you met Ken, you probably wouldn't know that he has facial paralysis.The tone and symmetry looks natural, but if he were to give you a wide grin, you would notice.  He is able to make a gentle, closed mouth smile, but his old smile is gone.

I encourage everyone, who has a damaged facial nerve,  to get in touch with Jackie. I have sent many people to her, and they have had similar experiences.  She is honest and caring, a true healer.  She is based in Madison, Wisconsin, and spends time each year in Los Angeles and New York seeing patients.  She also has a practice via Skype for people who can't travel to Madison. 

Miranda
 

[Sonia in Sydney]

Miranda, thanks for post. Patience is so hard when i am now seeing photos and video of the new or prefer to say "temporary me". Though its great to hear from others on how they progressed. 
Eve, i have had 5 sessions of acupuncture and i cant really see any improvement but my acupuncturist does believe he sees some wrinkles above my paralysed eye. Though i don't see anything, i do believe it helps me have some relaxation at least once a week. I have two kids (a 2 and a 5 month old) so life is pretty busy but acupuncture gives me time for me. The acupuncture can be uncomfortable when it starts especially around the eyes and mouth but i remind myself it is going to help my healing. The man i see did recommend starting ASAP post surgery so if you can and are interested in alternate therapies i would seek out someone to start treating you soon.

Sonia

[phantagrae]

I don't know how many of you have seen Mark Ruffalo's video interview, or read the interview/article he did for a New York publication (don't remember if it was the New York Times or a magazine or what--it's online somewhere), but he had a large tumor on the left side.  He has described it as the size of a golf ball or a walnut.

Anyway, he had surgery and awoke with facial paralysis.  I don't know if he ever said specifically, but I assume his facial nerve was "bruised" and not severed.
Of course, as an actor whose film career was just starting to pick up, he wasn't sure he still had a career.  He and his family retreated to their place in upstate NY and of course he didn't do any acting projects for a while.

He worked hard at improving his nutrition and he did get accupuncture.  I guess he started pretty much right away, but about a year or so later he was able to return to work.  If you look at him now, you can't really tell he has had any facial issues unless you look closely.
In his latest films, I have found that I can detect a slight difference around his mouth if he's yelling or smiling broadly or something like that, but only because I know it's there.

Of course, everyone's case is different and everyone heals differently, but I see his story as a measure of encouragement.
I had radiation rather than surgery, so I have not had the problems with paralysis that others have had, but I still look at Mark Ruffalo as a success story.