Posted by: jewood10 ®
05/27/2011, 06:14:30
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I would think the Dr. that has diagnosed your condition would be able to either perform the botox injections or recommend one who could. My doctor does shots and performs neck and throat surgery. He is director of the voice and swallowing center here and is an Otolaryngology M.D., F.A.C.S. He only deals with throat and speking problems. I am very pleased with the positive effects of the botox shots. Good voice. Jack
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Posted by: ShelleyAnne ®
06/16/2011, 14:50:28
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Mary, I too have a very "rare" condition, and was originally diagnosed with SD/AD in Sept. 2008, and by March 2009 I began having problems breathing and shortness of breath. I search through many doctors all over our country and two specialists told me I have a very "rare" type of dysphonia which affects breathing as well as speaking. My voice is choked out severely and I cannot exhale air to produce voice. I was not given this "name" for a diagnosis, but was told what I have is extremely rare. I am looking into some other information on possibly thyroid-related conditions which can cause loss of voice and shortness of breath. If you would to communicate with me more, please feel free to email me at shelleystipes@gmail.com
I, like you, do not know many people with the same condition, in fact, no one who has the same symptoms I do. I live in the United States, St. Louis, Missouri area.
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Posted by: rainbow ®
06/16/2011, 17:47:43
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I, too, have similar symptoms and my ENT has no answers. I can tell you that I have recently been seeing a physical therapist and working on releasing the tension in the SCM and scalene muscles. I am happy to report that the waves of tension that I feel often during the day in my neck have decreased and that this is the BEST voice I have had in 3 years. I also receive a 30 minute cervical massage every two weeks. I have PT exercises that I do daily to strengthen my back muscles and during the process have noted how much I use my neck to accomplish simple tasks that I should be using other muscles to achieve. I also have exercises which open up the chest area and work on good posture. You may want to seek some alternative stress relievers to ascertain if they can help you as well. I have also given up playing tennis for now because this activity did stress my body and alter my breathing. Also, pay attention to your breathing patterns and make sure you are inhaling and exhaling routinely and properly. I live 25 miles outside of New Orleans, LA. You can email me as well at rsh731@aol.com. Good luck.
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Posted by: maryprince ®
06/24/2011, 16:04:12
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Thanks for your replies,
It sounds as if your conditions , which seem very rare too , are different from mine ,I think , but maybe we can discuss it some more. I also had stretches of those muscles (my husband is a physical therapist), speech therapy centred around breathing patterns, treatment for reflux. The only thing that helped was botox. My symptoms are noisy restricted breathing on inspiration only, with no effect on voice. "stridor" is the medical term for the noisy breathing , and it is difficult to breath and takes a lot of energy and requires the use of muscles I would not normally use. When affected I can do nothing strenuous and walk at a much slower pace(I am very fit normally and exercise frequently).I have low energy , cant work , and need hours more sleep each day.I also have a chronic productive cough , upper airway, that remains even after botox.Any further info would be great. I live in Ireland and am currently looking for a consultant in Europe that may have treated patients with this condition.
Thank you, Mary
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Posted by: Barb P ®
06/30/2011, 10:48:39
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Mary, I have close to what you are describing and I have not met anyone with the same thing yet. I have the same symptoms of stridor on inhalation, cough and fatigue. My breathing is affected but not my voice. It is very difficult to exercise because I just can't get enough air. Breathing is exhausting so I tend to sleep a lot both because I am tired from the effort of breathing and because I breathe easily and normally when I am asleep. The name I have been given for this is "adductor spasmodic dysphonia-respiratory type." I tried botox for a year and it seemed to work at first but needed a little fine tuning to get the right dose. However, with each injection, I got more side effects and less benefit. I have not had botox since Oct. I'm kind of at a loss for what to try next.
Barb
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Posted by: maryprince ®
07/23/2011, 16:54:34
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Hi Barb,I am so sorry to hear that you are not getting anymore relief from the botox but happy to have met the first person that seems to have the same condition as me. Are you seeing a consultant that has treated this condition before? Have they ever mentioned a surgical procedure that can be tried if you do not get relief from the botox? At the moment I am seeing a new consultant in Ireland in three days, and in a few weeks I hope , a consultant in England. This is all in the hope of meeting a dr who has treated thiks condition before!I am good at the moment, still coughing but no stridor.Well I played a game of squash last week as I began stridor again and it settled after a few minutes. My botox is due to wear off in about three weeks time. I have new symptoms of a heaviness on my chest and some parasthesia(pins and needles ) in my fingers on occassions, and rarely in my toes. My consultant thinks it is unrelated!I look forward to hearing from you again... dont give up hope yet. Mary
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Posted by: Loud Mouth ®
11/12/2011, 11:07:30
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I was curious if I could ask you questions about your dysphonia? I also have symptoms that do not affect my voice.
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Posted by: Barb P ®
12/31/2011, 22:58:03
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Sorry I didn't see your post until today. Feel free to e-mail me. Put something in the title so I will know it's about SD.
My e-mail is ladyrascall@aol.com
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