Posted by: Laurie ®
10/17/2004, 08:19:41
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Hi, Margie. Welcome to the NSDA bulletin board.An excellent ENT (who specializes in voice disorders - it's important to look for that) in the Chicago area is Dr. Robert Bastian. Here's his contact information: Robert Bastian, M.D.
Bastian Voice Institute
3010 Highland Parkway
Suite 550
Downers Grove, Illinois 60515
Tel: 630-724-1100
Fax: 630-724-0084 You can also check out www.dysphonia.org and click on healthcare referrals to find other professionals in your area (as well as more information on SD/laryngeal dystonia). If I lived in or anywhere near Chicago, I'd go to Bastian for a firm diagnosis. I've heard him speak at several SD patient symposiums. Again, welcome to the board. Laurie (AD/SD, NYC)
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Posted by: Ida ®
10/17/2004, 08:24:38
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Hello Margie
I am sorry you have SD but happy for you that you know what you have and there is a support system here for you. I know how relieved you must feel to finally have a name for your speaking disorder and know that other people have it too.
My disorder went undiagnosed for 10 years. Having been told by a number of doctors (one of the a neurologist, for God's sake)that it was psychological, I tried to get my head and my life together and felt I was failing for 10 years. Finally I read about this strange disorder in a magazine and took it to a ENT who honestly said he didn't know that much about it but referred me to a place where they were doing research on it.
I am sure you will find good doctors in the Chicago area. Good luck and keep in touch.
Ida
ADSD 27 yrs.
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Posted by: PJSmith ®
10/17/2004, 10:45:58
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Hi Margie!You are fortunate to live in the Chicago area and have access to Dr. Robert Bastian. He is the best. He is knowledgeable and an expert on SD. Like you I diagnosed my SD after stumbling around doctors for two years with no answers. Then I went on the internet, searched the symptoms and bingo! My first ENT in Glenview was just in the beginning of his career treating SD. I was his first Abductor case (which I didn't know at the time). The botox injections were nightmarish to say the least. THEN I realized with some additional driving time from the northern suburbs to Dr. Bastian I may find a more qualified doctor. What a difference it made in my life. What a wonderful doctor and person!!!! I moved four years ago to Az and haven't had botox since. No one seems to have Dr. Bastian's experience and know how. So you can imagine how much I miss him! See Dr. Bastian and I promise you will be pleased. Good luck,
Pat in Phoenix
AB/SD since 1996
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Posted by: kybutterfly ®
10/17/2004, 13:49:41
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Margie, your post really touched my heart and I understand your pain. This past year I found out after many yrs. of suffering with a voice disorder that I have muscle tension dyshponia. I have seen an excellent doctor along with a voice/speech therapist. My insurance was not paying for my therapy visits so I had to discontinue. My therapist has sent me exercises to work on and she is very supportive. The sad thing is I was always able to control my voice to an extent until here recently, its like something changed and now my voice is worse than ever and I can bearly communicate. I do my exercises religiously so this is really another BIG letdown to me. I have become phobic about speaking now and I am in a hospital trying to do clinicials. I changed my career from education wich was the love of my life to this and now I am not even sure if I will be able to go on. I know and hate what alcohol does but I have started drinking some to cope with this and it is helping. (I don't drink and work) Now there is the sick danger of me becomming alcoholic. I have become very depressed and angry to the point were I almost don't care. I take meds. for depression and anxiety but they are no longer helping. This monster has finally gotten the best of me. You Are Not Alone!! My family really doesnt seem to understand what I am going through and considering that I speak much better around them I can understand their feelings. My prayer for you is that you can get the help you need and keep your sanity. You have found a great, supportive forum here and it is very helpful. Take care and good luck, Beth
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Posted by: helen ®
10/18/2004, 12:18:13
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There is a Dr Rezak out of Glenview who has helped my brother with CT. I did meet with him briefly a few years ago and he did say he can help me but with the Botox injections. Unfortunately, I have not been able to afford his services since I have been unemployed and without health insurance since 1997. I was diagnosed in 1991. It never gets easier or accepted. I find that my voice has gotten progressively worse the past few years. I am not totally convinced that this is a "brain" disorder. In my personal opinion, I think it has more to do with the stress and tension of everyday life and keeping your feelings all bottled up which causes one huge ball of tension in your upper body which tightens the chest, the shoulders, the neck and your voice. Maybe if I had the money I would try Botox....but can't for right now. There is also a Dr Bastian who I believe is out of Loyola Medical Center in Maywood. He was the one who actually diagnosed me correctly after many visits to different doctors. Let me know how it goes for you.
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Posted by: hopewells ®
10/18/2004, 15:31:34
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Thank you all for your kind replies. I feel as though I "belong" for the first time in many years. As it turns out, Dr.Bastian has been repeatedly recommended, so I felt confident in making an appointment to see him. However, when I called to make the appointment, I learned that he is so popular that he's not available until the end of next month. As I'm sure you all can understand, I'm very anxious to get a diagnosis as quickly as possible; So, I hesitantly made an appointment with his partner, Dr. Richardson, for next week. Does anyone have experience with him?
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Posted by: summer ®
10/19/2004, 13:45:21
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Margie --You are certainly not alone. The undiagnosed period is truly torment like you've described. For me, I was just starting university and I developed a fear of speaking up in classes and in other public situations...something that I still haven't truly gotten over even though I've been treated with Botox since. I was even afraid to order food in a restaurant for the fear that my voice will start to fail me. It's a horrible period in our lives where there is confusion, self-blame, low self esteem, and wrong diagnosis from doctors. (I was told by one doctor that I would "grow out of it"). I'm glad that you found your way onto this board. Good luck in seeking out medical treatment. Let us know how it all goes. -Summer
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Posted by: tim haskett ®
10/20/2004, 17:11:10
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Hi Margie, like you I am a newcomer to AD/SD. Based on my changing voice, strangers have asked me about my country of origin (I guess they think I sound like a "foreigner"), to my state of health ("you sound like you're sick") to "you sound terrible" which is probably the most honest response. Embarrasing indeed and also dampening my desire to speak at all because of the awful noises I make when I talk - I wonder if there is a support group for people who have to listen to us all the time? Anyway, we do have a great support system here in this online forum. Will help us live a less tormented life. Tim Haskett Eureka, CA
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Posted by: salome ®
10/24/2004, 12:30:54
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your story took me back many years to my own emotional self-diagnosis after many years of fruitlessly seeking help, feeling helpless and hopeless, and so alone in my difficulty. i broke down weeping in a college libary as I read my exact symptoms in a book by Dr. Aronson, an authority in the voice disorder field from Mayo Clinic. it was a long, difficult road to get to the truth of the matter. the diagnosis, when i went to Mayo Clinic and consulted with Dr. Aronson, was an immense help and load off my mind.
Finding a support group also will be of inestimable help. It helps so much finding out that no matter what you are going through, have gone through, there are others who will understand perfectly, having gone through it themselves.
Keep posting so we know how things go with you! Salome
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