Spasmodic Dysphonia Bulletin Board

My SD experience
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Posted by: Sonya ® 03/21/2006, 10:13:07

I am new at this and would just like to explain problems I have gone through the past year.I have had this problem for 6 years now but have recently had problems with medical help.Over..........

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Re: My SD experience Re: My SD experience -- Sonya Top of thread Archive Posted by: LauraH ® 03/21/2006, 12:53:05 Hi Sonya, Welcome to the bulletin board! From your post, it appears that you may think this is a chat room, which it isn't. People sign on at varying times of the day, and either respond to previous posts, or post their own new ones. It is a great source of knowledge and support for SD'rs. Please let us know what type of SD you have(AB or AD,) and share your problems and questions. Anyone who can help will, and others may just offer you support, which is equally important! Laura ADSD since '98/PA/USA | Recommend | Alert Where am I? Original message Top of thread Current page Re: My SD experience Re: Re: My SD experience -- LauraH Top of thread Archive Posted by: Sonya ® 03/22/2006, 08:27:56 I have had this problem with Spasmodic Dysphonia for 6 years.It seems like I had a cold that wouldn`t go away.Then I had problems talking without any other symptoms of a cold.I have been taking Boutx for years upto 2004 in October.It seemed I wasn`t getting much benefit from the Boutx anymore,so I went to a place in Rochester Mn where I undergone surgury to my vocal cords called a type 1 Anthroplasty.They brought the very bottom of my vocal cords together in hopes they would come together better when I talk.The first 2 and Half months I was talking really well.Then the swelling to my vocal cords came down while it was healing which made my vocal cords fall back apart from each other.I had another appt 3 months after the surgery.The rest of the treatment composed of a Boutx but I decided not to have the Boutx there but where I live with the doctor I am use to having Boutx with so I wouldn`t be working between doctors.I got back to my home state and I had to wait 2 months more to get an appointment with him and he refused to treat me with the Boutx.After several months of asking for the Boutx he refuses.I don`t see why he wouldn`t at least try the Boutx.What will it hurt.I contacted another laryngologist closer to my home town and I pray he will at least try.My appt is next week.I don`t know if I can handle another let down.I`m very nervous about it.I just want to finish the treatment with the Boutx and see if it works.This whole ordeal has been going on since last year the 18th of march.I have been diagnosed with Abb and Add dysphonia with tremors.Everyday is such a struggle.Work is the hardest.Just trying to find an answer.Over............................ | Recommend | Alert Where am I? Original message Top of thread Current page Re: My SD experience Re: Re: My SD experience -- Sonya Top of thread Archive Posted by: mary salisbury ® 03/22/2006, 15:25:32 Hi Sonya... You mentioned you went to Rochester, MN for your surgery. I assume you went to Mayo. Are you north or south of Rochester or in a neighboring state? In the Twin Cities there are two very reputable doctors (ENT's) who do Botox injections. They both have many SD patients. One is Dr. George Goding at the University of Minnesota (Minneapolis campus). Another is Dr. Katherine Kendall at Park Nicollet Clinic in St. Louis Park--a suburb just west of Minneapolis. If you want numbers for them or directions, or more info just let me know. You can reach me directly at this email address: salismn@comcast.net I believe there is also a doc in Duluth who is listed on the National Spasmodic Dysphomia website. On the homepage look for doctors or physicians...that will take you into a list of states and from there, they list doctors who do Botox. It's important to go to a doc who has a lot of experience doing Botox injections. Their years of experience can make a big difference in "hitting the right spot" in the muscles they inject...and that can make a big difference in the outcome for your voice. Dr. Goding has been doing Botox injections since 1988. I'm not sure about Dr. Kendall, but I think she was recruited to Park Nicollet for her knowledge and experience with voice disorders. I have met Dr. Kendall (went to her for a second opinion) and liked her and the voice therapist who works with her. So I think either of these docs would be a good choice. DR. Kendall might be easier to get an appointment with without waiting for months because she's only been ay Park Nicollet a year and probably doesn't have as large of a patient load. Good Luck to you and let me know if I can be of help. I also have both AB and AD dysphonia. We are a rare breed! Mary Salisbury AB/AD SD St. Paul, Minnesota Modified by mary salisbury at Wed, Mar 22, 2006, 15:28:30 | Recommend | Alert Where am I? Original message Top of thread Current page Re: My SD experience Re: Re: My SD experience -- mary salisbury Top of thread Archive Posted by: Sonya ® 03/23/2006, 08:41:38 I use to live in Rochester,Mn but I live in Michigan now.I was going to Ann Arbor.I`m seeing someone in Bay City.I hope he works out or I`ll just keep trying.Thanks for the info. | Recommend | Alert Where am I? Original message Top of thread Current page Re: My SD experience Re: Re: My SD experience -- mary salisbury Top of thread Archive Posted by: Lynne ® 03/23/2006, 17:15:23 Good info on resources in the area, Mary. Wanted to add to information about Dr. Kendall. She was at UC Davis Medical Center (Sacramento) for many years and was highly esteemed and effective for SD patients in Northern California. In 1994, I learned about her (saw a TV piece on her administering Botox --- first time I knew that botulinum toxin was something positive!) and was finally able to self-diagnose my severe AD-SD case, after several years of going to doctors who couldn't figure out what was wrong with me. I finally was able to see Dr. Kendall in January, 2004 as a patient (several years after vocal surgery at UCSF) due to my severe laryngeal breathing problems. Unfortunately, she left California the following month. But, she was very helpful in that one comprehensive appointment. So many people out here miss Dr. Kendall. Thanks for your good words about her and I'm pleased to know she is establishing herself in your area. Lynne (AD-SD; RLN surgery; PVFM; Northern California) L7martinez@aol.com | Recommend | Alert Where am I? Original message Top of thread Current page Re: My SD experience Re: Re: My SD experience -- LauraH Top of thread Archive Posted by: Sonya ® 03/25/2006, 08:20:23 Does anyone know of some support groups in Michigan near Bay City? Sonya | Recommend | Alert Where am I? Original message Top of thread Current page