Muscle Tension Dysphonia/Vocal Problems
Posted 07 June 2007 - 11:49 AM
I have had problems with my voice for 10 months (98% of the time) with hoarseness; vocal cord/muscle spasms; shortness of breath accompanied with fatigue due to struggle to talk and breathe.
I've been to several doctors, starting with the Neurologist, then PCP, ENT, Speech Pathologist, Gastroenterologist, Pulmonologist, Voice & Swallow Specialist, Speech Therapist. The doctors couldn't agree on what was causing this problem. I stopped talking on the phone; stopped going to restaurants; stopped going out.
BTW - Two doctors said it was Parkinson's; one said it was caused by acid reflux; two said I did not have the typical Parkinson's voice; one said it was Spasmodic Dysphonia; one said Dystonia with PD, and, finally Muscle Tension Dysphonia. Do I finally have the right DX and will the Botox stop the spasms so that I can once again talk normally and breathe? I really don't know! I know the botox may only last 2-3 months, but I'm ready to try anything. I believe the hardest part of all of this is the shortness of breath when my throat muscles spasm and contract.
The Speech Therapist and the Speech Pathologist who have been trained in LSVT have said that it is not due to the Parkinsons. I do not have the typical Parkinson's voice. And, by the way, the speech therapy was not successful even though I did do my home practice.
I would really appreciate input from anyone who has had similar problems and/or knowledge of this condition and botox treatment.
I still believe it is related to PD. After all, the vocal cords are muscles. Comments, please.
I sincerely appreciate those of you who take the time to answer questions on this Forum. There are many of us who look but don't ask questions. They, like me, mostly lurk, trying to learn from those of you who share your knowledge and experience of this dreaded disease. Thank you!
Posted 07 June 2007 - 01:43 PM
First, National Public Radio talk show host(ess) Diane Rhem has an evident voice disorder for which she receives injections of some sort every several weeks. I recall her mentioning once that doctors felt early on and incorrectly that she had Parkinsons. Her treatments for which she happens to be off radio this week do seem to help. Her biography "Finding My Voice" might offer some insights.
I've had PD for about 14 years and for about a year now the related complication of distonia first in my elbow, then wrist and now on to my shoulder and across to my other shoulder. I sincerely hope you don't have anything like this as it is insufferable. Earlier in my PD I went through a stage where my voice projection was impaired somewhat and I have a bit of a monotone but this seems to have improved now.
In any case, like some distonias mine is very responsive to L-dopa (sinemet). My first wearing off symptom is stiffening of my solar-plexis (spelling?) or diaphram...which of course intereferes with breathing. My next symtom is stiffening of my arm and shoulder muscles as a result of distonic muscle(s) contraction. By taking one 25/100 sinemet I can relieve both symtoms for a few hours depending on the time of day. I wonder if sinemet might assist in ascertaining the nature and name of your malady.
My neurologist does recognize that botox injections can temporarily relieve PD distonia but she points out the following:
1. Where exactly to do the injection is guess work. And in any case eliminates any use of the arm at all. Likely no relief to diaphram stiffness...though I understand your breathing difficulty is more windpipe related.
2. Cost: $900 per shot and frequently not covered by insrance.
3. If sinemet is working to alleviate what really is intense pain from distonia....maybe stick with it.
Best wishes to you.
Posted 07 June 2007 - 03:01 PM
My drug cocktail:
1 1/2 tabs, 25/100, levo/carbidopa, 3 x's day (tremor/stiffness)
3 tabs, 3 mg, Requip, 3 x's day (tremor/stiffness)
1/2 tab, .5 mg, Clonazapam, 3 x's day (inner tremor/anxiety)
1 1/2 tabs, 150 mgs, Sertraline (Zoloft) 1 per day (depression)
2 tabs, 40 mgs, Nexium, 2 x's per day (GERD)
1 tab, 112 mcg, levothyroxine, hypothyroidism
CO2, 2 Liters
With this drug cocktail, the only maladies that are being helped are the outer tremor of my right hand/arm; GERD; and thyroid.
So far, nothing has helped with stiffness of my legs/trunk, inner tremors, vocal cord spasms; depression/anxiety, internal tremors, and shortness of breath.
I do not have a problem in voice projection nor is it monotone. So, perhaps it is not related to my PD?
I can live with the sound of my voice and not being able to talk on the phone, etc., it's the shortness of breath that is wearing me down. Even the oxygen that I use as needed, does not help. My vocal cords go into spasms whenever I get anxious/stressed, which is almost constant. It can be good or bad stress. And, the stress can be so minimal that it's ridiculous what starts the spasms/tremors.
Re cost of Botox injections. I called Medicare and asked if they covered Botox injections. I was told that as long as it was prescribed by a doctor it would be covered. I have to tell you, though, that I am a little leary if that is actually the case. And, Botox would have to be done at least 3-4 times a year. How long will Medicare pay? And, how long before the vocal cords calcify? I don't know.
I am also scared of placement of the needles because there are many folds in the vocal cords. If the doctor misses, then it will not take.
I must ask you about the stiffening of your diaphragm (spell?), which interferes with your breathing. Are you on oxygen? If so, does it help? I ask because one of the many doctors that I have seen said that my shortness of breath (SOB) is caused by PD and the lung muscles, and that oxygen wouldn't help; yet, the Pulmonologist said I have COPD, which is causing the SOB. So, with the vocal cord spasms and SOB, I'm having a heck of a time with breathing. (It ruins my good disposition....NOT!) I can't even get a firm DX on the cause of the SOB. How does one get correctly diagnosed without having to go to numerous doctors? It is not only time consuming, but it is expensive. Why are these problems such a mystery to doctors who are supposed to be specialists?
Sorry this is so lengthy but there are so many questions and no where to go and no one to turn to for for answers without seeing numerous doctors.
Also, Roger, I have had dystonia in my right shoulder and it was very painful. So, I feel for you! The physical therapy that I endured put me in tears. Seemed like it went away in approx 3 months (thank heaven). My heart goes out to everyone who has to suffer the pain of dystonia.
To the people on this Forum who care and share, I thank you.
Open to any and all informational sharing....
Thanks again, Cathy
Posted 08 June 2007 - 06:26 AM
I don't take oxygen ... breathe unassisted though with difficulty when dopamine ebbs.
Finding the right docter(s) for a diverse and channging collectiion of symptoms is problematic. I'm at a loss for advice - being struck by how different practitioners have either been puzzled by or mistaken about my shorter list. A multidisciplinary team similar to this one in Washington DC might be worthwhile although Georgetown seems rather thin in the neurologiocal aspects.
http://www.georgetow... ... cfm?id=275
Good luck to you, Cathy.
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