I have told that I have spasmodic dystonia, well like most of you that have posted frustration in being asked well we find nothing organically wrong with your vocal cords, no masses in the throat, no lumps on thyroid, but still no voice since September 11th. Then asked what happened before I lost my voice, has it ever come back (NO)and so forth. Well, yes I had a number of things happen, first I live outside DC when the awful events of the 11th occurred and my husband is at the Capitol. My father in law who I was very close to, died. It was the anniversary of my mothers death and I have been working 55 hours a week since the summer, and its a job where you talk all day long to clients. So, with all that it could be stress. But after doing my own research I have repeatedly told these two ENT docs and my own, that I have difficulty swollowing, pain in the back of neck, and headaches but they just focus on what they are seeing and not listening to the rest.The recommendation has been voice therapy to retrain my voice, since they did hint that this was neurological. But it may or not be successful. What I want to know has anyone else had speech therapy recommended?
Fortunately, We are in a position that I don't need to work, so without a voice, I can't work. But just to build a case I have been thinking about applying for disability. Suggestions and your thoughts would be appreciated. Right now my husband and I very confused and frustrated
Jean
Re: Thank goodness I found this board
Jean, My situation in some ways is similar to yours. After repeated episodes of "laryngitis" over the past several years (ten episodes in this past year) my voice never came back after August 17. Unlike you, I had no trauma in my life prior to losing my voice. The major stress has been the voice loss itself. I have seen two ENT's, had several scopes and a videostroboscopy, and six weeks of voice therapy with a speech pathologist. On my fourth session of voice therapy I made dramatic improvement but it gradually returned to my strained whisper. I would encourage voice therapy because even though my voice didn't stay good, the techniques still help me to be heard when I need to be. My diagnosis after all this is abductor spasmodic dysphonia. My next step is Mayo Clinic on Feb. 1. I hope you get some help with voice therapy. Vicki
Re: Thank goodness I found this board
Did they tell you that everything was okay when they did the scopes. Since my husband and I are both medical, Im a nurse by trade. My husband is a pulmonary technologist and respiratory therapist. We both saw the scopes and everything looked normal. They did see some hyperplasia (swelling Im sure). But they offered nothing but the speech therapist. They did dwell on quizing me about the allergies and so forth. But I know that is not the problem. This really all started 13 years ago after my mother died and my son started with all his problems, so it makes you wonder if it is mental. It started with periods of no voice on and off for a week or so, at one time two weeks. We just don't really see a point to the speech therapist. We are concerned that neurologically something should be looked or do I need a shrink.
Re: Thank goodness I found this board
Everything looked normal with the scopes, but I had a videostroboscopy which showed the vocal folds had good movement (no paralysis) but don't come together to vibrate when I speak, thus the strained whisper. The first ENT I saw thought the problems was allergies. I had the allergy testing and tested positive to all the allergens, but medication got my symptoms under control so I, as well as my family doctor, were pretty sure the voice loss wasn't allergy related. I am in the medical field too. I did some research and was pretty sure I had ABSD before the doctor diagnosed it.
Re: Thank goodness I found this board
I read the article that was posted and it does give a great explanation of the different forms of SD and others that correlate with the disease. I know you have heard this before, but it all looks pretty frustating. However, with more thinking and writing down what exactly could of started this or how long signs of this disease have been present. I started thinking way back to when I was child and diagnosed with lazy eye, or a muscle weakness in both eyes that causes one not to focus on objects properly. My husband and my mother, both would always say look at me, so I knew I was looking over my shoulder other than when you talk with people I could tell, because they kept looking behind them. Well, I get headaches that are only behind my eyes at times, I began to wonder is this a form a tremors also that causes the muscle to tighten when its not right to begin with thus the migraine.
I have to admit that usually Im stressed at the time when some of these headaches occur. I quit work as a result of this, since Im trained in people jobs, Im a nurse so you can't really talk. But since I have been home, still no voice and there is nothing here to stress me out at all, as a matter of fact when old friends have seen me they think I look more rested and relaxed, but still no voice at all. I also gather that even though this is something that won't kill me, there really isn't any reasonable hope for ever getting a voice back.
Im considering the speech therapist, but my husband would like to see a neurology consult. I have a periods of slurred speech at times which I only thought was cognitive overload. I have terrific neck pain, which none of the ENT doctors even blink at, so we just want to check all the avenues. I have learned to write more, and friends that know about all this email
me because they know that its easier for me to talk. I usually call people at Christmas and ended up sending out notes and cards, so much for cutting that out, and explaining what was going on. I also discovered that there is a radio personality for a university here in DC that has this disease, Diane Rehm. But I listen to her 31st radio broadcast and she does have a voice, a bit staggered and slurred but at least a voice. I guess I also have abductor type. We also have realized that its not due to acid burnout of the throat, caused by reflux, they have been giving me all these antacid meds. Now that is not to say one doesnt have problems but I don't need them daily like my primary kept insisting that I try. Still learning, in silence.
Re: Thank goodness I found this board
My wife had trouble at first, none of the ENT or other doctors had a definate diagnosis. We then heard about Dr. Flint at Johns Hopkins in Baltimore. He has been a life saver for my wife. He was able to positively identify that she had SD and she has been getting Botox shots for 2 years now with wonderful results. John Hopkins is a leader in this field and that is what you need.
Re: Thank goodness I found this board
Im trying to understand these Botox injections. Im not sure I can have such a thing since I have no immune system (or at lease Impaired) I have Hepatitis C also, which I thought was big enough to have deal with, now this. Can you tell me who you saw up there, and also did the injections work. Does she have a "normal" voice?
Comparison of SD, MTD, and PD
This page has a good comparison of Spasmodic Dysphonia, Muscle Tension Dysphonia, and Psychogenic Dysphonia.
Micki
Related link: http://web.nmsu.edu/~lleeper/pages/Voice/harrelson/voice3.htm
Re: Comparison of SD, MTD, and PD
SD and PD (the official initials for "Parkinsons Disease") are clearly neurological. MTD (Muscle Tension Dysphonia) is not neurological. It's caused by abuse to the vocal system. I've never heard of Psychogenic Dysphonia (in 10 years of heavy research). The initials "PD" have already been taken by Parkinsons so there should be no confusion with other disorders.
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