(Information on these pages is NOT to be used for mailing lists or any similar purpose!)
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Pat Emerson - 12/01/00 17:49:22 My Email:lynpat@acadiacom.net | Comments: I had an AN removed 32 years ago. 5 years ago I found a Great Dr. in Pittsburgh that has helped me Smile. Her name is Dr. Jessie VanSwearingen (412) 647-1227 and I'm going the physical therapy route, but she works with Dr. Manders, who is a Plastic Surgeon (a good one), I feel as though she has worked mircles - just call her and talk I really think she is the best - REMEMBER SMILE!!!! |
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Sherry - 11/22/00 19:09:31 My Email:Kardiffkid@aol.com | Comments: What a great site!! Only wished I had found this a year ago. I had a AN tumor removed 18 months ago, which has left my face paralyized. I also (3 months ago) had a face nerve cross over. Anyone else out there like to chat??? |
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Pat - 11/16/00 20:37:51 My Email:pallikian@earthlink.net | Comments: Bells Palsy - Jan. 16,2000 - Massage treatments, Acupuncturew/stimulation and decompression surgery on Mar. 6 - left with extreme synkinesis. Any info on this would be helpful and appreciated. |
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BARBARA - 10/28/00 17:20:08 My Email:GGERRYG@AOL.COM | Comments: I HAVE A FACIAL NEUROMA AND WOULD LIKE TO SPEAK TO PEOPLE WHO HAD RADIATION TREATMENT-I,M CONTIPLATING THIS TREATMENT -ANY COMENTS IN THIS AREA WOULD BE APPRECIATED THANK U BARBARA |
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rita grosscup - 10/21/00 18:10:15 My Email:g4651@starpower,net | Comments: I have been dealing with facial paralysis since March 1996, due to a large acoustic neuroma removal on the left side. I have been through many re-animations trying to restore my face back to some what normalcy. Every procedure has given me much improvem nt! |
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- 10/07/00 03:09:35 My Email:wendy@msn.com | Comments: My mom was diagonsed with bell's palsey it's almost a year. I'm deperate for feed back. does anyone know a specialist in the Illinois area? I don't like seeing her like this. The doctor's dia- this, but personally I think she had somewhat of a stroke. I w s very hot at work. it mist of been 100 degrees that day than she came home and it was air conditoning. help |
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Paul - 07/11/00 23:56:40 My Email:Falcon1510@aol.com | Comments: Until I read all the comments from different people in the support groups I thought i was the only one out there.I was unfortunate enough to have two tumors, an acoustic neuroma and a facial nerve schwanoma.I have had 15 surgeries in 5 years and still no ovement in the rihgt side of my face.Could any out there refer me to a doctor that actualy knows about the facial nerve.If any one needs more info please contact me at Falcon1510@aol.com |
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Caprice Fuentes - 06/10/00 18:02:36 My Email:G4Caprice@aol.com | Comments: Hoping someone out there can help me. After a brain surgery to remove a cyst last year the left side of my face was left parylyzed. They say that the 7th facial nerve wasn't damaged it just isn't working anymore. Since it has been a year I am beginning to ecplore my options for "facial reanimation" two procedures are being offered 1) temporal muscle transfer? 2) cross facial nerve graft with subsequent muscle transfer. |
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Louise Morin - 06/09/00 02:43:20 My Email:morinduncan@home.com | Comments: Looking for people who had a nerve graft to reanimate the face. |
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LINDA MCCLINTOCK - 04/15/00 04:36:35 My Email:JAMRAM1@email.msn.com | Comments: 43yoa female with what we thought was bells palsy since 1998. i still had facial paralysis but now my eye is now closed all the time with severe swelling both my fifth and seventh nerve are affected. no one seem to know what to do. |
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Kathy Poumakis - 03/29/00 19:51:23 My Email:Kpoumakis@aol.com | Comments: |
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Bob Raisor - 03/13/00 01:26:20 My Email:braisor@adsnet.com | Comments: Eight years ago, I was diagnosed with Ramsey Hunt Syndrome, which has left the right size of my face partially paralyzed. Now on the internet, I learn of some options not provcided by my doctor. Living near Chicago, in Indiana, I don't know where to go or call for the kind of pysical therapy I need. Anyone know of qualified people in this area with whom I can contact? |
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sarasmiles.com - 03/06/00 15:40:09 My Email:suziep1@aol.com | Comments: |
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Sharon Miller - 02/29/00 16:58:48 My Email:sfm1@psu.edu | Comments: I am almost one year post AN surgery (1.2 cm removed by mid fossa approach) and suffered damage to my 7th nerve resulting in complete paralysis (post-opt). One year late I now have more symmetry and some facial function. I have just started neuromuscular retraining in the hopes of improving my facial function. I have developed synkinesis but am optimistic about NMR. I am 44 year |
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jean lacourse - 02/28/00 00:15:35 My Email:lacourse@netcom.ca | Comments: |
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Jax Martin - 12/29/99 23:41:35 My Email:jax.martin@cwcom.net | Comments: Hi, I've just discovered your website - hooray at last I'm not alone! I am 33 years old and have Moebius Syndrome. I had surgery in 1992 and now have a smile - not a huge grin - but I'm not complaining! Plus I know it works as people smile back at me wh ch makes it all worthwhile. If anyone would like more information please don't hesitate to contact me. |
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Cheryl Mazeski - 12/19/99 15:53:49 My Email:pcmazoak@sgi.net | Comments: |
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hillduck - 12/09/99 01:37:31 | Comments: |
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Eden Marie Aber - 11/07/99 19:14:40 My Email:aber_e@yahoo.com | Comments: Hi, my name is Eden Marie Aber & am 23 years old. A couple of months after I turned 21, I was diagnosed with and emergency surgery on a brain tumor that I didn't even know existed. Fortunately, the tumor was completely benign, but it was on my Cerebellu and Brain Stem, temporalily ruining my balance & coordination, I'm slowly getting it back, & a lot of nerve damage was done, in which the left side of my face doesn't move & I have double vision. I would love to talk to people that I can somewhat relate to, this has been incredbly hard & might be a little easier if I could speak to people with the same problem:) Thankyou, Eden Marie Aber 1848 S. Oronogo Apt. 4C Webb City, Missouri 64870 417/673-1331 |
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Judy Boyter - 09/11/99 02:57:10 My Email:jboyter@bigfoot.com | Comments: Hello, I was given some of your literature from my therapist here in northwest Houston, TX. He is in the process of being trained by my therapist in Tucson, AZ (affiliated with National Centers for Facial Paralysis/187736 Pier Point Place/Montgomery Village, MD 20886) I have had facial paralysis since Nov. 20, 1998. Much of my movement has returned, but I'm still dealing with about 30% of the left side of the face not responding. I'm using a ten's (spelling) unit for 3 hours every night and building up to 5 hours. It's good to know about your center there. I did not know of anyone else to turn to. I found Dr. Targan with National Center for Facial Paralysis on the internet last January. He told me to wait 6 months before seeing him. You may know of him. He has 18 clinics open for facial paralysis patients...mostly in the northeast. I never understood why, in a city like Houston, I couldn't find a doctor to help me..other than to say to wait and see if it gets better. At least I am actively doing something...using the tens unit daily, weekly physical therapy, facial exercises 3 times a day. I flew to Arizona 3 times until my therapist met with my present therapist and began training here in Houston. Maybe you could send me more information. My address is: 17218 Shadow Valley Drive Spring, Texas 77379 Thank y |
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Carol Petersen - 08/27/99 23:47:41 My Email:carolynnpeter@uswest.net | Comments: I have a left side facial nerve parlaysis as a result of surgery for a benign brain tumor on my brain stem 2 years ago. I have had som physical therapy by a speach therapist with no results. I have also had a gold weight placed in the affected eye lid with reasonable results. I am having the most trouble accepting the fact that I cannot smile. I would very much like to talk to others who have experienced this problem to see how they have d lt with this issue. Also I would appreciate knowing what types of treatments and surgeries others have found successful. I am feeling very much alone in this situation and am very glad to have found this web site. Thank you. |
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Kim James Myers - 08/02/99 01:24:25 My Email:kmyers2822@aol.com | Comments: I have right side facial paralysis that occured in 4/97 due to brain surgery to remove a (VM) vain malformation. I was told that this was a possibility due to the location of the VM. I am undergoing nerve and muscle grafts to give me some function back. I hope this works, if anyone want's to talk or give me some information on the success of this procedure, feel free to contact me at kmyers2822@aol.com. And I want to say that this site is greatly appreciated, I don't feel so alone. God bless all.:) |
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Diane Huwer - 07/19/99 21:25:15 My Email:dgehrs@conning.com | Comments: |
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Peri Smith - 07/01/99 23:09:17 My Email:peris@learningtree.com | Comments: Thank you so much for providing such valuable information. I've recently been diagnosed with Bell's Palsy (9 days ago) and have been searching for more information about this bizarre form of paralysis. I have found your website very beneficial. Thank yo ! |
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Pat (SMILE) Emerson - 06/29/99 17:33:11 My Email:lynpat@acadiacom.net | Comments: I always enjoyed reading your newsletter - I wish that you would continue the interesting articles and good reading. |
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RAM - 06/07/99 17:55:46 My Email:AZEEZL@HOTMAIL.COM | Comments: 7th June 1999 Hi, Im a 48yr old male from the Asian Subcontinent who moved to Canada about 10 yrs ago. Soon after, I relocated, I developed a slight twitch in my right eye. At 1st, I attributed this to the extreme cold climatic conditions of Canada. However, this twich pro ressively increased, affecting the right side of my face & resulting in a slight contortion towards the region of my mouth.I consulted a few GPs & after a Catscan,I was told that I have to undergo an operation in the head region, presumably to decompress nerve. I was also warned that it was quite a risky operation with a 50/50 chance.Hence, Im averse to surgery & am now writing to you for advice on any alternative method of cure. Incidentally, I experience no pain whatsoever & the twitches tend to increa e when Im tired or excited but are less noticeable by others when Im calm & relaxed. Also, Im perfectly healthy otherwise & suffer no medical complications whatsoever. I would appreciate it if you could please put me in touch with some GPs in the Toronto/ ontreal or even N.York areas who specialize in treating people with this condition & hope that your readers with similar experiences would kindly share them with me so that I could find a possible cure for my problem.Thank you for the wonderful job you ar doing & God Bless! RAM |
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Patty from Florida - 01/22/99 22:01:15 My Email:paibli@webtv.net | Comments: I was just looking for people with Bell's Palsy I was just diagnosed Monday and am looking for on line support system |
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- 01/21/99 19:58:35 | Comments: JIM, would you please tell me how you are doing?? I have an appt. with a Doctor who treats facial paralysis, I was just wondering how much you have improved. Please respond here and is there anyway I could reach you? Please let me know. Thanks for any inf . |
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Mandy Bisland - 01/20/99 18:53:37 My Email:Mbisland@yahoo.com | Comments: My daughter was born with a facial palsy. At three months old there is still no improvement. Although the doctors said it would be gone within 3 hours of birth. The information that I recieved has been more helpful than the doctors have been. Thank y u |
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Carmen Wurts - 01/14/99 20:26:55 | Comments: So glad I found these pages!! |
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Carmen - 01/14/99 17:49:13 My Email:mwurts@hotmail.com | Comments: Hi, I just found your website. I have had partial facial paralysis on my left side since birth due to trauma. Please can anyone tell me what kind of treatments there are. Thanks |
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jim - 12/04/98 19:35:13 | Comments: hi, i just found your page. I have suffered from palsy on the right side of my face since birth. I recently had surgery to improve the droop and possibly create a smile. It has been a month and i still have substantial swelling. My surgery was done using the massiter muscle, which was connected to the corner of my mouth. I'm just wondering if the is anyone out the who has had a similar surgery and could tell me how long it took them to recover. thanks... |
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Elisabeth Knaack - 10/04/98 04:24:50 My Email:elisab@execpc.com | Comments: Hi- I am facially different and the coordinator for a facial support group in Milwaukee, WI. I was saddened to see your group has disbanded. Just out of curiosity, why has it stopped meeting? Was it due to the patients' lack of interest? We tried getting a group together a few years ago but it slowly died for that very reason. As I said, I'm just curious. Keep smiling, Elisabeth Knaack |
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JILL GOLDMAN - 09/24/98 11:54:56 My Email:sseldin@way.com | Comments: What has happened to the UPMC Facial Nerve Center? I cannot reach it by telephone, and when I called Dr. Manders secretary, I was told that they no longer have a receptionist, and they only have one therapist. Are they discontinuing the program? Since I live in New York, I cannot drive over to UPMC to find out what is happening. |
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- 09/22/98 18:10:23 My Email:SuzieP1@aol.com | Comments: The journey to Sara's Smile http//members.tripod.com/~sarasmiles8/index.html Sara has had facial paralysis for 8 years and just this month has regained the ability to smile |
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Anna - 09/10/98 14:56:13 My Email:astrapub@msn.com | Comments: I am on the list in AN group and it works a lot like an worldwide support group. It would be great to have something like that for the FP.But I am not that computer-fluent to start one. Is anyone here? That would be great. I had good results with craniosacral therapy too - just too slow and the good dr retired. There is not one as trusworthy as he was around here (PA close to Philly). Now I started biofeedback in Wisconsin - and a moment ago I learned about Pittsburgh (much closer!) Well, I have to go on there since I already started.It is a similar program I think.Only travel is more expensive (motel and the treatment are probably the same anyway)My FP was caused by the ruptured AVM (arteriovenous malformation) in 1985 - su h a long time ago and they still give me hope.Please write if you started exercise program in Pittsburgh or Madison |
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Anna - 09/10/98 14:39:15 My Email:astrapub@msn.com | Comments: I am glad to find this place although I was hoping to attend some meeting. Let me know when they start Thanks |
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kirsten orskov dameyer - 08/27/98 09:12:45 My Email:IanFrame2@BigFoot.Com | Comments: I am a 30 yr old Danish Woman that suffers from Facial Paralysis caused during pregnancy. I would be grateful for any advice on this, especially minimising the pain. Thankyou |
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Barbara Kremenzky - 08/06/98 18:21:27 My Email:Barbara.Kremenezky@coastalcorp.com | Comments: Has anyone ever gained their smile back after having lost it to Bell's Palsy? After 5 years ? |
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Nadia Felix P.T - 06/04/98 13:23:26 My Email:nadia@pla.net.ar | Comments: I'm using craneosacral therapy in facial palsy succefully. I 'd like to know more about biofeedback,and if it works in this case. Thanks.Nadia |
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Diana Abrell - 04/18/98 15:30:34 My Email:abrell@tdsnet.com | Comments: |
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Theresa Yaczola - 03/09/98 23:25:15 My Email:lilcasa@sgi.net | Comments: I just got on the internet and have been waiting to get logged onto this site. I am a patient at the Pittsburgh office and see Jennifer Brach once a month for therapy. I had an acoustic neuroma removed in December 1995. I was in surgery for 24 hours an thanks to the doctors at University of Pittsburgh Medical Center I made it through. I lost the hearing in my left ear and balance nerve on the left side. I compensate for both very well. They did a nerve graph on my facial nerve and I am trying to tra n it to do the things it is suppose to do. I thing I find hardest about the therapy is committing to exercise every day. I look forward to any e-mail. |
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Pat Emerson - 03/09/98 18:00:41 My Email:lynpat@acadicom.net | Comments: I'd like to join your support, I belong to one in LA/MS but REALLY enjoyed yours when I was there in December 97. Please let me know how much the dues are, because Jessie VanSwearingen told me you have a FANTASTIC newsletter. If any other Acoustic Neroum patient reads this, I had my tumor removed 29 1/2 years ago and I've been coming to Pittsburgh for almost 3 years and my face looks so much better. |
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Stephen Seldin - 02/25/98 02:48:48 My Email:sseldin@way.com | Comments: My wife has Bell's Palsy / Ramsey Hunt Syndrom. Do you know of any supprot groups in the New York City area? sseldin@way.com |
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Mike VanLare - 12/10/97 22:50:38 My Email:Mike7734@aol.com | Comments: Excellent website! There are many resources on this page that are all useful! Please visit my website: http://www.angelfire.com/ny/tmse/moebius.html C-YA!!!!!!!!!!!! |
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Leslie Van De Car - 12/10/97 03:33:25 My Email:frazzel@hotmail.com | Comments: It sounds like you have a great support group going. It is too bad that there are not more around the country. Do you know of any Support Groups in Michigan or Northern Ohio? |
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kathy adams - 12/03/97 15:39:50 | Comments: |
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- 11/17/97 18:08:45 My Email:Suziep1@aol.com | Comments: My daughter is 7 years old and has lt sided facial paralysis due to a injury she would like to meet other children with facial paralysis thanks |
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Martha Fernández-Sardina - 11/14/97 00:48:13 My Email:FernandM@adw.org | Comments: My 9 y-o niece, Tabatha, has developed facial paralysis on the left side. No known cause at the moment. Could you direct me to the best resources out there? I myself had paralysis 6 years ago, result of nerve damage in a car accident that almost took my life. It receded compleyely after four months - thanks be to God! I appreciate any help. Martha |
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Sandy Goodwick - 11/09/97 18:48:10 My Email:sandygo@soca.com | Comments: THANK YOU VERY MUCH for starting such a much-needed resource as this! While I have Moebius syndrome (perhaps "the" most rare form of facial paralysis) I still understand the validity in finding others who understand. Maybe your support group could serve as a prototype for other similar facial paralysis support groups in other areas of the country. Thanks again! |
