Posted by: David Barton ®
05/10/2006, 20:03:56
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Not a silly question at all.According to Dr Robert Bastian (keynote speaker at our recent NSDA symposium) there is a 97% overlap between the two. A good way of explaining it is that 'laryngeal dystonia' is the underlying condition - a neurological movement disorder - and a particular kind of focal dystonia, affecting the larynx and vocal cords. 'Spasmodic dysphonia' is the broken, effortful voice you produce and others hear as a result of the dystonia. My understanding of Dr Bastian's speech, and I am over-simplifying, is that in about 3% of cases there are other things going on with the laryngeal dystonia, for example affecting the breathing. David Barton (AD/SD, Auckland, New Zealand)
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Posted by: snowie ®
05/11/2006, 02:33:26
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Hi Ellie,
Are you in the UK ? .... here in England, Spasmodic Dysphonia is known as 'Laryngeal Dystonia' which I think is a more apt name.David, I'd be interested to know more about what Dr Bastian said in his speech, regarding the 3% of laryngeal dystonia cases, where other things could be going on with 'laryngeal dystonia, which you say can include affecting the breathing.
I do get problems with my breathing, but I didn't realise it could be as a result of the Laryngeal Dystonia itself, but thought there must be some thing else compounding the problem.
Can you tell us more ? ... Thanks,
Snowie AB SD, London, UK debbie.skerrett@ntlworld.com
Modified by snowie at Thu, May 11, 2006, 02:34:15
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Posted by: David Barton ®
05/16/2006, 16:25:32
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Hi DebbieSorry for the delay in replying. Dr Bastian's speech was more of a summary than an in-depth look at those 3% of cases where the laryngeal dystonia (LD) is also affecting the breathing. My understanding of his talk is that 'spasmodic dysphonia' is always, by definition, a result/manifestation of laryngeal dystonia, but that the LD can be involved in other problems as well as voicing. There are many types of voice problem, some that can masquerade as SD, but if they are not caused by laryngeal dystonia then they are not spasmodic dysphonia. Unfortunately some people use 'SD' as a vague 'catch all' phrase to describe a tight voice, but in these cases there is something else going on - usually functional. My personal thoughts are that it is entirely possible to have other problems co-existing with LD, rather than caused by LD per se. A good example is asthma. Asthma is relatively common. Some SD people also have asthma. Does that mean one cuases the other? Probably not ... as far as it is known the percentage of SD patients who have asthma is about the same as the percentage of all people who have asthma. Another example is reflux. So just because someone has breathing problems, and is a diagnosed SD patient, doesn't mean that the LD is causing the breathing problems. David Barton
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Posted by: Barbara S. White ®
05/11/2006, 14:22:30
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I didn't know that. I thought they were the same thing. Than what you are saying is that layngeal dystonia aslo affects the breathing. I wonder if that is what I have. My doctor uses them interchangably but maybe that is what I really have, however I didn't have the breathing problem until about a year after I started having botox. Not from the botox but when I needed botox. Now that I have had surgery I still have some breathing problems but my doctor calls it panic attacks. I would be interested on more information on this.
Thanks for your post
Barbara / god4me@comcast.net
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Posted by: SCOTTME56 ®
05/11/2006, 16:28:51
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I HAVE EXPERIECED BREATHING PROBLEMS THE LAST FEW MONTHS
I THOUGHT THEY MIGHT BE PANIC ATTACKS SO I HAD MY DR START ME ON ANTI ANXIETY MEDS
BUT I REALLY THINK NOW THAT IT IS THE DYSTONIA BUT THE MEDS HELP TO SETTLE ME DOWN I DONT BREATHE SO HARD
WISH I COULD FIND AN EASY SOLUTION TO THE PROBLEM BUT THERE DOESN'T SEEM TO BE ANY
BUT AT LEAST I KNOW IT'S NOT JUST IN MY HEAD AND THERE ARE OTHERS WITH THE SAME PROBLEMMARY
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Posted by: Barbara S. White ®
05/15/2006, 20:01:06
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Just wondering at what point your brathing problems started. Mine started about a year after I starting having botox injections. The injections worked great but whever I needed a new injection I had a problem breathing. The botox took care of the breathing until I needed a new injection. I have since had SLAD-R surgery simply because it was two hours each way to get botox. I found that to be unacceptable. The surgery did wonders for me, but it does not work for everyone. However, I still have a problem breathing. My doctor says its anxiety and gives me medication for it and it does help but its also addictive so I would love to get off of the medicine. Actually after I first had surgery I could breath fine but I started having trouble about a month later. My voice is great. No problem there at all. My doctor thinks that there is swelling on my vocal cords which he says would be totally understandable after surgery. In fact he is very impressed with the surgery and my voice change. He did not do the surgery. It was done by Dr. Gerald Berke at UCLA. I go for a few days at time that I am fine and take no medicine but the slightest breathing problem and I panic and end up back on the meds. It seems that many SD people have problems breathing and I don't know exactly what the common denominator is in each of us, if there is one. Some have them after botox and some before botox. It's seems to be more AD/SD people rather than AB/SD but I could be wrong about that. All I know is breathing is something that is difficult to deal with. We have to be able to breath just to do the normal daily routine but I hate taking addictive drugs. I hate worse not being able to breath. I do remember after surgery that I was having no breathing problems and I went to church and was sharing my testamony with a lady. I was so excited but my voice was not completely back yet. It had only been about a month. She realized I was straining and tried to tell me not to talk but I kept going on and on. By the time I got home I could hardly breath. I think perhaps I overdie too soon after surgery and now it is more anxiety than anything else because my voice is really good and am totally happy with it. I don't know too much about Laryngeal dystonia vs Spasmodic Dysphonia. My doctor uses them interchangablly but David Barton said the difference is breathing problems and he just may be right. I don't know but I am working on some different exercises that seem to help somewhat. As long as I take my anxiety pills I am fine but I feel like a drug addic and I don't like that feeling. My doctor says I have more anxiety about becomming a drug addic than about breathing and that I just need to give myself more time to heal. The healing time for SLAD-R surgery is about 1 year. It's been 5 months + for me so far. I guess I consider myself healed because I can talk up a storm and compete in any conversation. My family keep complaining that I talk too much now. I tell them I couldn't talk for 30 years and now they are going to have to listen to me because I love to hear myself talk. I don't know if your breathing problems are from Laryngeal dystonia or if mine are from LD or what but so many are having the same problem. I pray you will find relief soon. Be blessed, Barbara / god4me@comcast.net
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Posted by: Dawn Smith ®
05/11/2006, 16:48:58
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I have adductor SD and also have experienced constant breathing problems but have learned to live with it. I am a smoker and pretty much just attributed it to that bad habit.
But, recently, I have had chest x-rays and breathing tests done and there is no problem with my lungs...no emphysema or things like that to cause what sounds like I'm out of breath all the time. The doctors have referred to it as "shallow breathing". I do have Asthma but it is mild and I use an inhaler daily to control that. I really don't know if this shallow breathing goes hand in hand with the SD but it seems to me that the two started at the same time.
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Posted by: Barbara S. White ®
05/15/2006, 20:08:47
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I too was diagnoised with asthma a few years ago but my breathing problem now is not coming from the lungs. My doctor does say that the other two SD patients he has has the same breathing problems and it is coming from the throat area. I can't help but agree because when I have an asthma attack its much deeper. In fact I have tried to use my nebalizer and I can't breath when I am using it so it does not help. I did have a very fast heart beat a few years ago that I was hospitilized for and the breathing problems really started about that time. They used the paddles to get my breathing regulated and my heart has been fine since but a year after taking botox I started having breathing problems again. The doctor said the EKG shows my heart is beating fine so guess its anxiety. I did another answer in this post that you might want to read as I bring up other things concerning breathing. Hope you get your brreath back soon.Blessings, Barbara / god4me@comcast.net
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Posted by: Laurie ®
05/11/2006, 13:17:07
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Hi, it's definitely not a silly question.I agree with what David and Snowie have already posted. My understanding from Robert Bastian, M.D. was that Spasmodic Dysphonia is the voice produced by Laryngeal Dystonia. And 97% (roughly?) of Laryngeal Dystonia (LD) patients have their LD dystonia manifest as Spasmodic Dysphonia. The slight difference would arise with the small group of laryngeal dystonia patients who could, for instance, have a laryngeal dystonia involving respiration. An example would be a laryngeal dystonia that causes the vocal folds to slam shut on inhalation, but may or may not produce the "spasmodic" voice more classic to AD/SD. Here only breathing would affected or both breathing and voice could be affected at the same time. I think there are a couple other examples of atypical laryngeal dystonias, but the one above is the one I've heard about most often. Laurie
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Posted by: ellie ®
05/11/2006, 16:22:42
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Thank you all for such a wealth of information. Apparently, others were not aware of the distinction either. After 6 years (I'm 57) of testing and receiving a different diagnosis from many ENT's, neurologists, gastro docs, and even an alllergist, I am doing my own research before going back for another try with an "expert". I've had 4 video-strobes, and each time a different answer all of which contained the word "probably" which doesn't sit well with me. I appreciate your answers.
Snowie, I'm in upstate New York.
Regards, Ellie
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Posted by: Laurie ®
05/11/2006, 17:37:15
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Hi again, Ellie.While some of this does get complicated with all the distinctions, my bet that is if you were diagnosed with either the term spasmodic dysphonia or laryngeal dystonia, it most likely meant the same thing from your doctors' points of view. I'm not saying that as a certainty, especially if you have an atypical, just that I respect and agree with these terms being used interchangeably by many MDs in the field. Laurie (NYC)
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Posted by: Mary Ann ®
05/13/2006, 08:46:36
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Hi Ellie, I have had the same experience. I would like to talk to you further you can email me at wujastyk@atlanticbb.net
Mary Ann , Salamanca New York.
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