Help for a fellow ANer

[epc1970]

Hi everyone!
The mother of a coworker of a friend of mine (confusing, I know!) had an AN surgically removed like 10 years ago. I'm a little vague on the details but I know the entire tumor was removed but the AN side of her face is paralyzed do not know if her facial nerve was preserved in tact or not. My friend has told me that the appearance of her face still causes her a great amount of emotional stress (understandable). We live in Maine where there are not many Drs who even know what an AN is not to mention how to treat the after effects of treatment (I'm the object of much fascination whenever I see a new Dr!). I was  so distressed to hear her story and was wondering if any one out there have any suggestions of possible treatments that could possibly help the appearance of her face. And what type of specialist would she need to go to for an evaluation? I have suggested that she visit this forum as a source of support but I know that many of you have had specific treatments for facial paralysis and I'd so like to give this lady some concrete options. Thank you in advance for any help that can be provided!
Erin

[amymeri]

I don't know what part of maine you are in but if she can get down to Boston, I can't recommend Dr. Tessa Hadlock highly enough.  She and the NMR physical therapist, Mara, are simply wonderful and I would recommend that as a first step.

There are others on this board that have had surgeries for facial reanimation with some great surgeons and they will chime in as well.  A lot depends on if she has ANY nerve function or not.

Here is Tessa's website.
http://www.facialplastics.meei.harvard.edu/center.htm
http://www.facialnervecenter.org/team_physicians.html

[ppearl214]

I don't know what part of maine you are in but if she can get down to Boston, I can't recommend Dr. Tessa Hadlock highly enough.  She and the NMR physical therapist, Mara, are simply wonderful and I would recommend that as a first step.

There are others on this board that have had surgeries for facial reanimation with some great surgeons and they will chime in as well.  A lot depends on if she has ANY nerve function or not.

Here is Tessa's website.
http://www.facialplastics.meei.harvard.edu/center.htm
http://www.facialnervecenter.org/team_physicians.html

In followup to this post, Tessa is also on the ANA Medical Advisory Board (MAB).

Phyl

[Kaybo]

Erin~
I had surgery 13 years ago and the 12/7 a year after that...while the 12/7 helped in that it was hooked back up to a "live" nerve - I didn't get much movement.  I was told that I never would because it had been too long for the nerves (they say that after the 1st year passes that whatever function you have is all that you will get but we have seen many on here that continue to improve way past that point!).  Anyway, I thought that that was it for me but then Nancyann on here told me about the Temporalis Tendon Transfer (T3) at Johns Hopkins with Dr. Patrick Byrne.  It doesn't matter how long it has been b/c it involved the tendons and muscles NOT the nerves.  I LOVE it - not perfect, but a BIG improvement!  I can't say enough good things about the T3 & Dr. Byrne.  I would LOVE to talk to your co-workers mom - please PM me if you think she would talk to me!!

K  

[epc1970]

Thank you all for your responses! I knew this was the place where I could get info about some options. I will be passing on this information right away!
Erin

[nancyann]

Hi Erin:  As Kay said, both she & I had the T3 surgery.   There are before/after pictures of me under Facial Issues, subject:  Post Temporalis Tendon Transfer, pg.2
Kay & I both have permanent paralysis, & this surgery gave us both a closed mouth smile.    I had more extensive work done on my face b/c I never had the nerve graft & so I had absolutely no muscle tone.
I wish your co-worker's mother all the best.    I was very depressed re: my appearance before the T3 surgery at Johns Hopkins (Dr. Patrick Byrne also - his practice is limited to treatment of the face - he's a real expert & wonderful human being).

Always good thoughts,  Nancy