Re: Dr. Berke's Surgery for laryngeal Spastic Disphonia
Larry,I know everyone on this bbs - and every person who has SD - wishes you a speedy and full recovery. Maybe it will be the best Christmas/Holiday gift ever! John
Re: Dr. Berke's Surgery for laryngeal Spastic Disphonia
Ive had SD for 34 years, but haven't sought treatment for many years. I'm also new to the bulletin board. Could you please tell me exactly what Dr. Berke"s surgery is.
Re: Dr. Berke's Surgery for laryngeal Spastic Disphonia
Hi Sharon,Welcome. I can help you with most any information you need concerning the surgery. There are several doctors who are doing this surgery now, unlike when I had mine. Dr. Berke is the one who pioneered this surgery and has trained many doctor's to do this surgery. You can reach Dr. Berke via e-mail at: GBerke@mednet.ucls.edu or his new assistant Dr. Damrose. Dr. Blumin was is assistant when I had the surgery. He has now moved to the University of Pennsylvania and is the Assistant Professor and Director of the Voice Center. You can reach him via e-mail at Bluminj@pahosp.com. The phone number for Dr. Berke is 310-206-6688. His nurse is Harriott Losin and you can contact her via e-mail at HLosin@mednet.ucla.edu. If you will contact me personally via e-mail I will supply you with reading material and my story of having SD and Surgery. My e-mail address is Angelica1008@aol.com. Please understand I am not advacating you or anyone to have this surgery, just simply suppling you information for your own research. It is a very personal decision that only you can make. I am just so glad that I had this surgery and feel very blessed and fortunate that I am now able to talk. I feel it is my duty to help and support others who have any form of SD. I hope this helps and if I can be of further assistance to you in any way, please do not hesitate to let me know. Regards, Jan Joiner - Alabama (SLAD'R Surgery - 6/01)
Re: Dr. Berke's Surgery for laryngeal Spastic Disphonia
Larry, I am so happy for you! I had Dr. Berke's surgery almost 2 years ago (Feb. 29) and could not be happier. It surely will be a Merry Christmas for you--and I wish a Happy Holiday to all:)
Re: Dr. Berke's Surgery for laryngeal Spastic Disphonia
Does Dr. Berke have a website or a source of information about his surgery? I would like more information on it!
Thanks!
~nicole
Re: Dr. Berke's Surgery for laryngeal Spasmodic Dysphonia
Nicole,Dr Berke is on the program to be one of the speakers at the NSDA Symposium in Scottsdale, AZ next March 9. To find out more, go to www.dysphonia.org and click on "Events". David Barton (AD/SD, New Zealand)
--modified by David Barton (NZ) at Sat, Dec 22, 2001, 00:08:58
Re: info on Dr. Berke's Surgery
Dr. Berke's webpage ( http://www.surgery.medsch.ucla.edu/divisions/headneck/oldheadneck/faculty/berke.htm)is sadly deficient in useful information. To contact his office for information you can try (310) 825-5179.Also, do a "search" on this bulletin board (click on Search at the top of the page.) Try "Berke", "SLAD/R" or "De/Re" in the search field. I haven't had the surgery (I'm not even a candidate since I'm AB!) but I have seen Dr. Berke for Botox injections. I wish you well, Robin (AB/So. Calif.)
Re: Dr. Berke's Surgery for laryngeal Spastic Disphonia
Hi Nicole,Welcome. I posted a reply to Sharon's post and I invite you to read that post and e-mail me personally if you need too. Best of luck. Regards, Jan Joiner - Alabama (SLAD'R Surgery - 6/01)
Re: Dr. Berke's Surgery for laryngeal Spastic Disphonia
Hi Larry,Welcome to the NSDA Bulletin Board to you, Sharon and Nicole and all who are new. I suffered with ADSD for 17 years and took Botox injections for 2 years. I had Dr. Berke's surgery in June of this year. I started regaining my voice at 3 months and 2 weeks post-op and have been talking since. I couldn't be happier with the results nor feel more blessed and very fortunate. I congradulate you on your courage to go through with this surgery. I am glad you feel the way you do about the results of the surgery thus far. Stay positive and calm yourself in order to allow yourself to heal properly. Also prayer each day for success can't hurt anything. I wish you the best of luck and before long you will be talking up a storm. Take care of yourself and keep us posted. Regards, Jan Joiner - Alabama (SLAD'R Surgery 6/01)
Re: Dr. Berke's Surgery for laryngeal Spastic Disphonia
Hi Jan ands all others who are new to the NSDA board as well,
Yes I am Larry, but I changed to my "Formal name" to get to the board because I forgot the old password. So call me Larry--just do not ask where Mo and Curly are! Ironically I am a special ed teacher, but we all get memory lapses, especially when we walk on clouds after Dr. Berke's surgery. The surgery of 12/14/01 has changed my life and I can't stop talking. I am like a person who had to be quiet so long and now I am down right annoying. I just can't shut up. I am a teacher who has had so much to say for so long it is like 22 years of thoughts are being let loose all at once. Talking was always so exhausting to me.(Ironic since I was on the debate team in college and taught public speaking), Now I have so much energy, it is truly scary. I feel I can go day and night. But I know I must rest and recuperate. I could not talk at all for one year of my life and that was hell. Fortunately I learned sign language and became a teacher of students that are both deaf and blind(Rubella syndrome).(for 4 years)
When I got my voice better through botox, my communication handicapped credentials allowed me to even be a speech therapist for one year. The 22 years were not too easy by any means as you all know. I was sent to every psychologist and relaxation therapist in the area. Finally, a speech therapist at our school told me about a friend who worked at a local university with SD people (did not know I had SD) and I got my first BOTOX shot. I was scared and could not swallow well. My voice was breathy. In 3 days I could talk! A botox shot(actually 2) cured me of what all the shrinks could not! My insurance changed and because of that I went to UCLA and saw Dr. BERKE.
Thank GOD! Dr. Berke is the GREATEST. He gave me better BOTOX or knows how to administer it better or whatever. My voice improved more. Finally after 6 years of BOTOX the area became calcified and the shots hurt more and were harder to give and take. I kept quiet (which I am good at after 22 years with SD), but Dr. Berke saw the silent tears running down my face. He suggested a surgical technique that could be a permanent solution. I was nervous and even postponed it once. Being a teacher who loves his pupils, I worked the surgery around the holiday vacation. The surgery was performed 12/14/01. I will hopefully go back to work on Valentine's Day and share a BIG Chocolate Heart with my pupils and staff and anyone at UCLA that cares to break bread with me that day and the rest of my life! Not speaking well gave me empathy and insight for my pupils and others with SD. It was a gift of God that I am happily returning (I HOPE) with Dr. Berke's skills and everyone's prayers. I will ALWAYS remember the lessons of Him who is our greatest teacher. I will ALWAYS FIGHT for the rights of ALL who are hurting and without a VOICE. I will ALWAYS remind teachers to give every child a voice whether he has CP or Downs or Autism or yes SD! I will always give a prayer of thanks each day of my life and I will always pray for all who have SD. I have more love and understanding in my life than I could ever imagine. I will always respect those who have speech difficulties and see the REAL person behind the silence and the hurt. Ironically my daughter is applying to graduate school to be a speech pathologist (my wife was pregnant with her when I got SD). God does work in strange and mysterious ways, but I firmly believe that He works for the GOOD and finds the GOOD in each of us so that we can help one another and come closer to HIM and our fellow man. For he who cares for the least of my brethren cares for ME (GOD)!
God Bless you All!
God Bless Dr. Berke.
And a special blessing to Kristina Gomez who was a Godsend to talk to on the phone before my surgery.
May you all have a Tremendous New Year!
Never Give up Hope and Never lose your sense of humor on those days that the dark side may try to creep up on you!
With Love and Understanding.
Your fellow SD brother,
Lawrence (Larry) Davis, Jr.
Re: Dr. Berke's Surgery for laryngeal Spastic Disphonia
How wonderful to hear of your success with surgery. It must feel absolutely amazing to be able to open your mouth and speak with ease.
You wrote with so much excitement and elation that I felt I was experiencing it with you!!!!! Enjoy it, you deserve it after 22 years.
What a way to start the New Year! Thanks for sharing your story. Cynthia AB/SD
A BIG HUG AND THANKS!
Thank you so much to all for your concern, compassion, encouragement, and quick responses to my story. I want to give all of you a BIG GROUP HUG across the Internet. You guys are all GREAT. Sometimes our troubles make us even greater. I hope and pray that ALL of you are coping, finding solutions, keeping your faith and your humor and your friendships to get through a tough burden.
May the burden be lighter with each of us hopefully caring and carrying a little bit of it for you. You are all beautiful people, May God Bless you and Hold you in the Palm of His hand. May we as a group always give comfort, peace, hugs and a shoulder to cry on if need be. May we never, never give up. You all have stories to tell and a great deal to give. Again THANKS! We can be made perfect in our imperfections. I wish Peace, Joy and a productive New Year!Larry Davis
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