Posted by: ceal ®
02/08/2010, 08:36:27
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I have been fighting Cervical Dystonia for 4 years now in my neck and right arm and in my voice box. I could not talk for over a year now. My neoroligist kept injecting my vocal cords and no success I was just getting burnt out with this. Had to get to a point where I was writing everything down. Well in Dec. my speech therepist told me Ceal it is not improving at all she said I want you to go to the U of M. So I set up a appt. with my Neouroligist and she was present and suggested to him I need a qualified ENT to do my voice box well he ready way said no reason for that I can do it. He denied me of going. So after we left Me & my speech therepist went to her office and she called the U of M for me she said I know a very high quality Dr. there that has helped so many so She set me up for Jan 19th and I drove there which is like 70 miles from me. And he injected me twice in the vocal cords and also ran a scope up my nose down to the throat and had me talk before the shots and could see how I was fighting to talk. And said your vocal cords are perfect just not being shot in the right places. So after my shots from him went back home and got up in the morning and I was talking in a high pitch but could understand me then the following day it went to a low pitch where I am at now but I can talk and talk with no strain. I cried so hard all these years could not talk properly. So he sent his report to my Primary dr. and my neouroligist and believe it or not I got a phone call from my neoroligist him personnally never heard of a dr. calling a patient. He could not believe how I sounded yes he now knows how he screwed up for all those years but he was sweet as pie to me I am sure worried about me sueing or something. But I am not that type. So now my next step is my neck bothers me so much and I am calling him and telling him right out if he can't improve it I will go to the U od M they have a dr. there that does arms and neck only and he is very sussessful. I may end up dojng all my shots at the U of M. # 1 I found the right dr. to make me talk again and that is a blessing to me and now gonna find the proper one for my neck and arm if mine can't do it. So to all of you if not improving keep looking and do it on your own like I did. I am so happy now but still have a ways to go. After awhile I think dr's think they own you. Well it did not stop me to go over his head. I had my primary dr. approve me to go there. So my ins. would pay. And I do not regret none of it. Now this week me & My Neoroligist are having a long talk now that he will see I can talk and how he screwed up all those years and I am gonna ask him to refer me elsewhere and if he doesn't will go over his head again and call my primary to do it. I also went before all of this and requested my 4 years of records to take with me. So please all of yous out there do what I am it is the best thing I could of ever done and I am so happy now. I struggle no more with my talking like a godsent. And I asked when do I come back he said when your voice gets bad again. He said normal patients are 7-9 months. He said in my case may be sooner because of all the grief I went thru all the years. So I sure hope this helps some of yous. Go over there heads they don't own you I found that out. Good luck to all. God Bless Ceal
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