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Posted by: paulc ® 04/15/2009, 15:27:00 |
Just wondered if anyone can help with a query . I had an examination of my larynx a few days ago with a camera down my throat - I think it's called a laryngoscopy . I was asked by the ENT consultant to hum . On the basis of this the consultant said that my vocal chords are coming together and not going into spasm . He said that the problem is therefore pyschological - as he thinks that the problem is " in my head " he has referred me for voice therapy which he thinks " will do me a lot of good . " I'm sure that I have ABSD as my voice is extremely breathy and I have to make a real effort to force out the words . I'm sure that if I had been asked to speak during the examination then this would have shown that my vocal chords are not coming together . Does anyone know whether the above is usual and whether or not simply humming will show one way or the other whether I have ABSD . I never have a problem humming but do speaking . Thanks very much for any help Paul
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Posted by: hoarse whisperer ® 04/19/2009, 16:01:24 |
This does not sound like a very thorough examination at all, especially by an ENT experienced with SD. I've been to many ENT doctors who really are experienced diagnosing and treating SD and they have always performed a thorough history and examination, including using a laryngoscope to view my vocal chords during voicing. This voicing usually included many "eeeeee's", "sssssss's", and then extended regular talking, such as reading (not just a couple of sentences either). For me, it's during this extended voicing that my SD symptoms are most prominent. Also, since the patient may be nervous and has the scope inserted, etc., sometimes it takes a while for all your SD symptoms to be seen by the doctor. The best place to find medical professionals (ENT doctor, neurologist, speech therapist, etc.) with experience diagnosing and treating SD or other voice disorders is on the NSDA website at http://www.dysphonia.org and then click on the Healthcare Referral link on the top menu. I've provided the link below and there's also a link to the NSDA site at the top of the main SD bulletin board page. Good luck! Lori
Related link: http://www.dysphonia.org/healthcare/ |
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Posted by: paulc ® 04/20/2009, 17:41:05 |
Thanks for your help Lori . It does sound like the examination I had was not at all thorough . I will have another appointment with the consultant in a few months after the voice therapy so I'll have to push then to have a much better examination . My SD symptoms are also much more obvious after prolonged speaking so I'll also make sure that he is aware of this . I think it will be useful to have the voice therapy anyway to see whether or not it helps although I'm not building my hopes up . If nothing else it will eliminate this as a treatment option for me . I live in England and consultants who are aware of and can treat SD are fairly few and far between . I specifically asked to see this particular consultant as he is aware of SD so I was surprised at the brief examination . It was fairly insulting to be told that " it's all in my head ! " I'll have to be more forceful when I see him next Thanks Paul
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Posted by: msdontje ® 04/20/2009, 16:48:31 |
Paul, To me it sounds like a typicaly session with some of the doctors. I was first told I had SD in 1998 but it was not until 2005 and many doctors and lots of botox shots (wasted) that I was finally correctly diagnosised correctly. I went to the NIH to participate in a study and was told there that I had both AB and Muscular SD. The problem with this is the muscular tends to over ride the botox and so I was not getting benefits of the injections. Now I get a single injection, max dose, on one side which works but only when injected on the left side. Keep searching you'll find a doctor that can help. If you can participate in a NIH study as they really give you an amazing examination and are great folks.... Mike |
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Posted by: paulc ® 04/22/2009, 14:57:37 |
Thanks Mike It does sound as though a lot of people have difficulty getting a correct diagnosis - it's extremely frustrating . The consultant I saw didn't seem to understand the difficulty I have speaking and was convinced straight away that it's " all in my head . " I guess I'll have to have the voice therapy and then see him again . If he still thinks there's nothing wrong then I'll have to see someone else . I'll keep trying until I get a proper diagnosis . I presume the NIH studies are in the States - I live in England so too far to travel ! Thanks again Paul
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Posted by: msdontje ® 04/25/2009, 19:10:44 |
Paul, It sure can be frustrating getting anything done it seems at times. Yes, NIH is in the US and they are wonderful folks. Good luck, but I would suggest that maybe you could contact the NIH and see if there is something in the UK that might be possible. Mike |
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Posted by: carolw ® 04/22/2009, 19:47:22 |
Dear Paul,
It sounds like you need to find a doctor who treats dysphonia. There are many ENT doctors everywhere who still know little about SD. Before I was diagnosed I saw 2 ENT doctors who didn't know what I had. I was diagnosed by a speech pathologist but not all speech pathologist are familiar with SD. Either use the dysphonia website or just call offices and ask if they treat spasmodic dysphonia. Good luck,
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Posted by: paulc ® 04/26/2009, 15:19:58 |
Thanks for the replies . I had made enquiries and specifically asked to be referred to this ENT consultant because he is aware of and treats SD - now I'm not so sure ! From what he said it was clear that he is aware of SD - I just think that because his examination was so brief that he can't be very experienced at dealing with SD or diagnosing it . I'll have to make more enquiries and try to get to see someone else . Thanks for your help Paul |
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Posted by: king ® 05/02/2009, 19:34:14 |
Good Luck with your sd. I recommend seeing dr. Peak Woo
in Manhattan. Mount Sinai Hospital. |
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Posted by: TomVA ® 04/30/2009, 21:04:46 |
Hi Paul,
I had pretty much the identical experience you had. My ABSD started about a year ago. I suddenly started "missing vowels" here and there, then more and more until I couldn't get through a single sentence. Within about a month of when it started, I learned that if I used a "Godfather voice" (using the false vocal folds), I could at least get a consistent sound without the missed vowels. I was so busy it was six months before I got around to going to an ENT. He also did an extremely brief laryngoscopy, just having me pronounce "eeeeeee". I'll make the long story short, and just say that he misdiagnosed it 3 different times over the next several months, including prescribing voice therapy. After about 8 voice therapy sessions, the therapist told me there was no point in continuing (I had to agree with him!) At one point, my own Internet search turned up SD, and I said to the ENT "I think I might have SD", to which he replied "Oh, no, you don't have that". It was several months later that I was finally diagnosed by a SLP/ENT team at a medical center in a different city. The SLP used a computer program that actually analyzed the waveforms of recordings of my speech. The ENT had a much more sophisticated laryngoscope. It had a microphone that was held against my throat while voicing. The laryngoscope light is "strobed" at the frequency being picked up by the microphone. This makes the vocal chords look like they are standing still (or actually beating very slowly), instead of beating at 400 times/second. I got my first Botox shot about a month ago, and I'm convinced that it actually made the symptoms worse. Before the Botox, I could suddenly "snap out of it" and talk almost normally for periods varying from seconds to minutes to hours, and sometimes even a day or two! But not so much since the Botox. I often have to take long solo drives for my business. When on the road, I've gotten into the habit of "practicing talking", by just reading roadsigns, randomly chatting, etc. I think this does seem to help for a while. This experimenting also leads to some fascinating observations. It seems like I can almost always say a syllable, phrase, word or even sentence if I can imagine myself saying it first! Of course, that doesn't really help in the course of normal conversation, but it does help in situations like ordering at a restaurant, etc., etc. I guess the problem is "all in our heads" in the sense that the problem is at the brain end of the neurons, not at the muscle end. It seems to me that its like certain neuronal circuits that control the vocal chord muscles have somehow gotten permanently "confused". I keep hoping that someone will come up with a way to "retrain" the brain to get it right again. Sorry to get so wordy. But it sure is nice to be able to share our experiences. Good Luck!
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Posted by: paulc ® 05/06/2009, 15:05:34 |
Hi Tom . Thanks for the reply . I've unfortunately had this condition for a long time - since the age of about 13-14 ( I'm now 41 ) . I had an op years ago as they thought I might have polyps on my vocal chords - following this they said that my vocal chords were completely normal and I therefore just assumed that I had a dreadful speaking voice and nothing could be done about it . It was only recently when I started researching it on the internet that I realised I had SD . Everything I've read about it and what people have said on this board fits in with my symptoms . I'm going to have the voice therapy that my consultant recommended but I don't expect it to do any good - I've got nothing to lose by giving it a go . I guess it'll be a long process for me to get correctly diagnosed and I'll have to push at my next appointment with the doc for a more thorough examination . My voice does deteriorate hugely over the day - it starts off near normal and gradually gets worse so that by mid-afternoon it " goes " completely and all I can do is whisper . Because of this I wonder whether I have MTD as well as ABSD as a result of forcing my voice . It's a bit random though and I have good days and bad days . It sounds odd but I can always feel in my throat whether or not the muscles are tight and whether I am going to have a good voice or not that day . I know what you mean about it being " in our heads " . I don't think that my consultant understands that physically sometimes it is impossible for me to speak in anything other than a whisper . He thinks that it's psychological ie nervousness , anxiety or lack of confidence . It's extremely frustrating . All the best with your treatment and hope there's some improvement Thanks Paul
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