Therapy needed in SouthEast

[AROBTEK]

Hi everybody,
I had a sural nerve graft in February 2010 and the muscle graft done in Dec 2010 at Emory in Atlanta.  I am still not having any movement and my surgeon wants me to have neuromuscular therapy (or testing to see if the muscle & nerve are alive).  Does anyone know where I could find some help with this in the SouthEast or anywhere? 

Thanks,
Annette

[cindyj]

Hi, Annette - not sure if we've "met" here on the forum, but I am in the Atl area...Have you tried Gaye Cronin at Atlanta Ear Clinic - she is highly trained in facial retraining and is a wonderful person!  She's located at Northside Hospital - at the very least, I think she could give you some direction.  Are you in the metro Atl area?  Do you know about our Support Group?  Our next meeting is Jun 16 - would love to have you!  I will send you a PM with my contact info and more about the particulars.  (I actually had Gaye come speak at our meeting a couple of years ago.)

Cindy

[AROBTEK]

Thanks Cindy, I will check into that asap!  Update- I have an appt. for May 14th!  Woohoo

Annette

[AROBTEK]

I actually got to go in for an early appointment today because someone else had cancelled!  My husband and I are very encouraged after meeting with Gaye.  The EMG (electrode type) shows that the nerves are actually firing and causing some small movement.  I can't see too much of it, but she did.  She gave me some exercises to do and I am to go back in two weeks.  At that time she is going to have a device (can't remember what kind) for me to use that will provide feedback during the exercises.  Gaye is very upbeat and encouraging so that helps too!

I am excited that there is 'something' going on and that there is hope!! 

Thanks Cindy for the referral!

Annette

[cindyj]

So glad you were able to see Gaye and she was able to give you some positive, helpful and hopeful feedback!  She is wonderful, isn't she!  Give us an update after your next appt. 

Cindy

[wendymenard]

Hey Cindy and Annette
Its Wendy I have an appointment with Gayle on the 28th. My facial paralysis has improved but I feel I am at a standstill. I am hoping she can shed some light on what is happening with my face and the nerve now. I am about 7 months post op. I can smile a little better but not my full smile and my eye either doesnt tear or it tears too much. I cannot move my eyebrow up and down yet. My taste buds are still metallic and my saliva on the right side is very sparse. Hoping she can do some testing to let me know what is going on. My tinnitus is actual really loud and constant...dont want to sound negative but just that with a combo on other issues has taken its toll. I really want to look for the positive in it but I need to know more information:) Cindy my family and I plan on coming to the AN support group meeting Saturday..Hope to see you there:)

[cindyj]

Great, Wendy!  Glad to hear you'll be there.  Talk to Gaye about your tinnitus also - Atl Ear Clinic does a treatment that they are, apparently, having some success with.  It involves electrical stimulation...

See you Saturday!

cindy

[wendymenard]

Thanks Cindy I had planned on talking more with Gayle about everything I am experiencing since surgery. Hoping they can help me out over there with some of these issues. See you Saturday...is it alright to bring my family? My husband would benefit from it as well as my 2 kids who are 8 and 13. I have the Phonak Cros so I could answer some questions from experience if need be. I am talking with Melanie Hutchins about starting a support group down south so I am excited about the possibility...

[cindyj]

Yes, family and friends are all welcome to come!  I saw Melanie yesterday and she mentioned that you had talked w/ her about a meeting on the other end of Atl...

Annette, would love if you could come also!  And anyone else here in Atl!

[wendymenard]

Hey Cindy
I really enjoyed meeting you this morning. The meeting was very helpful to me as well as my family. I am super excited about the possibility of starting another support group on the south side and I will get with you because I would like to have my meetings in the months that you are not so we can offer people more opportunities to be able to meet either on your end or my end. I look forward in working more closely with you. I also enjoyed meeting Melanie and Judi.. everyone was so nice and supportive.  I am excited about meeting with Gayle Cronin at the end of the month too.

[cindyj]

Was great to meet you, too!  And your family!  Wish I could have talked with you longer, but glad you were able to talk with Judy & Melanie - yes, we will talk about coordinating dates for the meetings.  So great of you to be willing to start a meeting down in your area!  Let me know how I can help...

You should go to the "hearing" section here on the forum and share about your new Phonak Cros - there are several threads with current comments going on right now.  A number of people are considering trying it out and I'm sure would benefit from your experience with it.

Let us know how your appt with Gaye goes - she is awesome and will, hopefully, be able to help you out...I must say, however, that I thought you looked great!

Cindy