EMG Nerve Test

[mimoore]

I have facial paralysys (I am 8.5 weeks post op).
I had an EMG test at 6 weeks post op. It is the test where they stick little pads and then needles on your face to see if there is any nerve/muscle reactions. The neuro guy looks at me and in this flat tone says "Nope nothing".  I was completely crushed - when I walked out with my husband I cried. I went to my family doctor after and went on anti-depressants - haven't cried in 2 weeks.
My surgeon said the nerve was stretched but still intact (tested during surgery - does that really mean much?). He even left some of the tumour 2-5% on the nerve so it would not be permanent. I cannot believe I am wishing my summer away so time will pass and something will happen IF it is going to happen at all.
Thanks Michelle 

[saralynn143]

Hey Michelle,

I had my surgery two days before yours (microvascular decompression for hemifacial spasm rather than AN surgery, but same effect on the facial nerve) and also woke up with facial paralysis. I got the same results from my facial EMG last Monday. The resident and technician saw no signs of regeneration, nor did the neurologist they called in. They even did some repeat shocks (fun, fun) to be sure, as they tried to decide if the muscle by my nose was moving or responding to direct stimulation.

However, the otolaryngologist that I saw the next day saw tiny movement beside my nose and lip -- just enough to score a whopping 12. He thinks that I will regain some, but not all, movement in the 12-18 months post-op. Which more or less means wait and see through December 2009. If I am not happy with results then, we'll talk about further surgical options.

As I understand it (from folks here, not from the EMG group, mind you), facial EMG results can change over time. Just because we had one with bad results this time does not mean that it won't be better next time.

I am scheduled to go back to see the otolaryngologist (Dr. Neely at Washington University, St. Louis) in November, but I don't know if I will be having another EMG at that time or not. I see an ophthalmologist next week, likely to schedule an eyelid weight.

I have contemplated asking my doctor about antidepressants, but I just got back to normal after getting off the anti-seizure medication I was taking for the hemifacial spasms. That med made me forget words mid-sentence, and I'd have to spend about 5 minutes waiting to think of it. Not good for a writer.

Anyway, it's nice to know someone else going through the same thing and in the same timeframe. Trish (calimama) also had surgery on June 2.

Take care,
Sara

[Jim Scott]

Hi, Michelle:

I'm so sorry that your EMG nerve test came out negative.  I won't condescend to you with hollow platitudes but I do hope you won't allow depression to force you to just give up, either.  Nerve regeneration is a very long, slow process.  There are alternatives including nerve graphs and such that I know little about but other members do, having undergone these procedures.  I hope some of these knowledgeable folks will post to you, explaining the options, something your doctors should have mentioned, seeing that the nerve test results were so negative and obviously had a profoundly depressing effect on you. 

Meanwhile, in lieu of any concrete suggestions and if it's O.K., I will simply keep you in my prayers. 

Jim

[nancyann]

Michelle:  Hang in there.....  the EMG only shows what's happening at that moment.   I am happy to hear your nerve is stretched, NOT cut.   People with stretched nerves have had recovery 1, 2, & more years later.   I know the waiting is awful,  It's only been 2 1/2 months - I know it seems like forever.

Take a deep breath my friend,  the wait is just beginning....

Always good thoughts,    Nancy

[mimoore]

Thank you for all of you kind words - this can be such a bummer at times - I want to be back to normal - not this new normal.
Michelle 

[saralynn143]

Michelle, have you seen any improvement yet? I have a very faint nasolabial line and my mouth has loosened up so that it is easier to eat and brush my teeth, and I can drink from a cup if I need to, but not a bottle. It's still easier to use a straw.

I'm still waiting for any signs of symmetry. The first major milestone for me will be when my face no longer pulls to the good side.

Take care,
Sara

[mimoore]

Hi Sarah,
I have been taking pictures of myself every 2 weeks to see if there is any change - the pulling to my good side is getting lots better. I think I have good tone. Honestly at rest it would be difficult to tell I was paralysed, (other than my googly eye). I am applying heat (with my homemade ricey bag) with tapping and light massage. I am taking 369 omega oils, B-Complex and A,C,E and Selenium. Who knows if it will help but can't hurt.
Paiently (okay not really) waiting for movement. I am staring facial retraining once movement starts. I have another EMG in October and I know it can detect things before I could but man am I scared for that... movement before that would be great.
Nice to know someone else is on the same time line..
Take Care
Michelle 

[Kaybo]

Hey Girls!
I have been there and I know how hard it is to have to be patient...you are in my thoughts & prayers!  I am here for you if you ever need a listening ear (singular) or a shoulder to cry on...

K

[1wareagle]

Michelle,

I know what you are going through! The doctor also told me that a small amount was left to preserve the facial nerve but I had NO movements. I had the goofy eye and the twisted face too. At 7 months I called him back to get my nerve tested because I was convinced he had cut my nerve. He reviewed my records to refresh his memory and he was confident that my movements would return. At 8 months I saw my first twitch and each day it has gotten a little better. At 9 months I could achieve a closed mouth smile and 12 months I could show all my upper teeth when I smiled. This past week I got the ability to close my bad eye while keeping my good eye open and its now 19 months. So don't give up....it will start when you have about given up!

Ellis

[mimoore]

That is so nice to hear about you. Of course I am praying for sooner rather than later but need to know that it may take longer than I want. I was told that my nerve tested really good (0.1 MA if that makes sense to anyone) at the brainstem and other areas of the nerve.
I find it so hard, at times, to believe it could come back when my face is so frozen right now.
Anyway take care - keep me posted on your progress.
My path report came back and at first my surgeon was not sure if it was a meninginoma or an acoustic neuroma and it is 100% an acoustic, so I guess I do belong here-thanks for making me feel so welcome everyone! 
Michelle 
Oh and I had my hearing tested - 100% deaf - anything I thought I could hear was from my other ear through my brain - weird eh. The ENT talked about wearing two hearing aids so the good ear could transmit to the bad ear.... any thoughts

[saralynn143]

Michelle, go to the hearing issues forum site and read about transear and BAHA. Fortunately my hearing looks like it is going to come back (I am already back to 85% speech recognition). But if it didn't, I was going to look into the transear. It's just one hearing aid that conducts sound waves from the nonhearing side across the skull to the hearing ear.

Sara

[mimoore]

thanks sarah I will check that out.

[elderbirds]

Hi Michelle,
Sorry to hear about your slow progress, but you are not alone.  I am 4 months post-op, and my ENT would not entertain the idea of nerve conduction test until 1 year post-op (maybe for those reasons).  He told me if I didn't see improvement by 4-6 weeks it wouldn't be until  5-8 months  I have seen improvement, but not where I want to be!  I don't want to wish away the summer, but looking forward to fall to see if there is another burst of improvement.  I haven't officially had a hearing test yet, but I am pretty sure the hearing is gone, just not ready to "hear that officially.  Was the EMG uncomfortable?  I know my mom has had it done on her hand, but the face seems a little weird.  Thanks, and hang in there.
Hope

[mimoore]

Hi Elderbird,
When did you have your surgery and when did movement begin for you?
The EMG test was not physically uncomfortable (considering what I had been through) it plays more tricks on your mind than anything else (I remember laying there thinking -pppllllllleeeeease let there be somethng). I was devastated when the doctor say "Nope nothing".
Nancy said it well, it is only a reading from just that moment - there is still hope if the nerve is intact. Here's hoping and staying positive - my happy pills are helping.
Michelle