Are you in NW Oregon or SW Washington State? ANA PORTLAND Meeting coming up!

[4cm in Pacific Northwest]

There is an ANA Local support group meeting in Portland Oregon coming up  and this (pasted below in purple italics ) was on the flyer I received in the mail- that I want to share with you fellow Pacific Northwesterners in my neck-of-the-woods specifically who are not ANA members – yet. 

Saturday May 10th, 2008
Providence St. Vincent Hospital
2nd Floor Conference Room #6
9205 SW Barnes Rd
Portland Oregon 97225
http://www.providence.org/oregon/facilities/hospitals/providence_st_vincent/default.htm


Topic:
Eye Issues & Management for AN patients
Presented by Dr. Eric Steele
Practicing Ophthalmologist & Oculofacial Plastic Surgeon
Casey Eye Institute
Assistant Professor, Ophthalmology OHSU
http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=13700


Friends, family members and interested person are welcome!

We hope you can join us for education, information, support and networking.

Daisy Head Mazy

[Jackie]

Thank-you Daisy-head Maisy!

I will be there with my hubby!
Jackie

[linny]

Great I will be there, what is the time??? I have seen this Docter up at OHSU    thanks for the info

[4cm in Pacific Northwest]

Oops- sorry  ... I forgot to type in the time 



1:00 PM

Daisy Head Mazy

[sgerrard]

I shan't be square,
I shall be there.

Steve   

[4cm in Pacific Northwest]

REMINDER

This meeting is TODAY at “1:00 pm�

(Someone unaware of the time called the hospital and was told 8-9 am… then contacted me. This is NOT accurate)

YES- The time of the meeting IS at 1:00 PM

I personally am looking forward to see sunny disposition smiley Steve     again… and hopefully meeting some new people as well.

This is the guest speaker
http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=13700

… and then there is caring and sharing time afterwards.

I managed to find a neuromuscular facial retraining therapist who travels to our area- and will briefly share that story with others who too - were looking for one.

Daisy Head Mazy

[sgerrard]

He looks to have a sunny smiling disposition too. 

See you there!

Steve

[4cm in Pacific Northwest]

Wow – what a great turnout at the meeting we had today.

(Linny we missed you!)

We did not have enough chairs for everyone and Mark and Jerry had to scramble to find some. Not including the guest speaker I counted 28 bodies.  There were a number of people with varying degrees of Bell’s palsy (and residual synkinesis) and I could not help but notice many a red droopy and/or irritated eyed person(s) who arrived looking ever so worn out with this AN journey and leaving looking quite optimistic now knowing there IS much that can be done to help them (especially related to their eye issues). The presentation on eye issues and eyelid weight implants by the young OHSU Casey Eye institute doctor was excellent.

Steve was radiating his usually sunny deposition and smile (must have been all those Gamma Knife Rays he absorbed in California- LOL)

Jackie and hubby were there too…

Many people were exchanging e-mail addresses and phone numbers on scrap pieces of paper. Lots of networking and friendship making was evident this afternoon - in Portland, Oregon.

And I got to meet my ole buddy Marg in person for the very first time. We both laughed at our matching dimples in the chin that moved when we attempt to raise the eye brow, and compared the eye that closes when we eat…

Marg said, “Hey- we look like family� …and we both burst out laughing.

(Marg was there on the phone for me when I first was released from Stanford Hospital complaining of a dry eye symptoms… and other AN post op related issues)

This time last year I had never heard of an acoustic neuroma- heck knows how to pronounce “vestibular schwannoma�.

This ANA has been my saving grace in this wild journey.

I am not sure I can wait until the fall before we have another PNW ANA family together – so I hope some (ok many) of you are keen on getting together for lunch before then.  Now trying to find a place that does not have loud fans, music and dowses the food in MSG that we can ALL agree on will be interesting. (MSG makes my facial nerve go very weird when I eat it so I try to avoid restaurants that cook with it- which is hard ) Given that we are moving into spring & summer (ok ok this is the coldest spring on record and it still feels like winter) …maybe we can have a picnic in the park (no fans or loud music- just birds) and bring our own food. (That way everybody’s special dietary needs are taken care of)

Special thanks to Jerry for coordinating and facilitating these meetings … (and showing up with snacks.)

Daisy Head Mazy (formerly “4�)

[4cm in Pacific Northwest]

Facial Nerve Help in the PDX area

There was much discussion about getting help for facial palsy (Bell’s palsy) at our Portland meeting today. There was not enough time for all to talk… and questions to be answered.

Here is some follow-up information if you want to explore the topic further.

Here is the Bells Palsy website
http://www.bellspalsy.ws/residual.htm
Here is their exercise page
http://www.bellspalsy.ws/exercise.htm
Here is their list of treatment centers (note none in the Pacific Northwest- YET!)
http://www.bellspalsy.ws/centers.htm

I will get back to you-all once I know how available a therapist will be to you - in our area.

Success stories were mentioned about people who found help for their Bells Palsy in other states.

In Portland Oregon a few of us were talking about “Nancy� and her amazing journey with having her facial nerve being permanently damaged and having full paralysis on one side. She persevered and got help and bravely imparted her experience and knowledge to others. Nancy is a hero to many of us on-line ANA folks- that is why we were talking about her today in our ANA meeting.
 (Are you ears ringing Nancy? We were talking about you!  ... with admiration… )

Here is the link we were talking about (re her story).
The documentary “before and after� photos are most impressive.
http://anausa.org/forum/index.php?topic=5544.msg52378#msg52378

This is where she had her surgery
http://www.hopkinsfacialplastics.com/gallery_facial_reanimation.php

A Canadian news story on this surgery
(I.e. this new procedure has made international news)
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20070718/facial_surgery_070718/20070718?hub=Health


For those who were discussing the “neuromuscular facial retraining� option- here is the article mentioned at the meeting today
http://www.ophth.wisc.edu/about/fsSummer2004.html#botox

Know that there IS facial palsy help – it is just that it has not been offered to us in our region (yet! ). The fact that no one in the room today was referred for help (when I inquired) with their facial issues or to a neuromuscular facial retraining therapist- yet there were many of us with facial issues there …. This indicates to me that there is a need for education here. Education on facial treatment not just for the patients -but obviously for the physicians in our locale too -is needed.  The evidence was there today -that there IS also a definite need for a neuromuscular facial retraining therapist in our Pacific Northwest area.

I think there is much hope in this situation- but we are all going to have to work together to get the resources, specifically for facial palsy, coming our direction.

Keep moving forward.

Daisy Head Mazy