Posted by: dfw ®
05/10/2007, 22:24:35
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This link does not work.Lori
AB/SD since 2003
Texas
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Posted by: Laurie ®
05/11/2007, 13:12:50
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Hi, there,It's true your dose was probably too high to start. 5 units bilaterally is quite high. You'll have to wait it out but next time I'd cut that dose by quite a bit (even down to 1 unit! or the option of only have one side injected can come into play down the line). The good thing is, it's temporary and always wears off. The frustrating thing is you'll have to wait it out. Best advice is to not try and push your voice/whisper louder than it wants to be during this phase. -Laurie
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Posted by: rahuba72 ®
05/20/2007, 12:20:10
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My reaction was not as bad as yours, but I can still relate to your frustration. My whisper voice lasted 2 weeks, then week 3 was only slightly above a whisper. I agree with you that at least with the SD you can compensate, but with the extremely weak voice, you have no voice options. I hated not being able to do my job at work (I am a telephone Customer Service Rep). Even though my supervisor/teammates were understanding (I just did paperwork/computerwork for a while), I still felt guilty for not being able to help with the phone calls. At least with the SD I could still talk on the phone (although with bad voice). My 1st Botox was 2.5 per side. I just got the 2nd treatment a few days ago - same dosage. After this one, I will decide if I want to lower the dosage. At first I was so discouraged by the long periods of no voice or little voice (not to mention swallowing/choking problems), that I didn't want to do Botox again. I imagine you might feel that way too. But I've decided to try it again, possibly with lower dosage. Good luck with whatever you decide to do! Laura
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Posted by: The Godfather ®
05/20/2007, 16:07:04
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I to had very breathy results with 2.5 each side. About 6 weeks my voice was very altered by the Botox. 3 of those weeks I was VERY breathy, 2 weeks was much more volume but sounded terrible, and the last week was a voice that sounded like bad layringitis. What followed was the greatest feeling I've had in years! Clear, smooth speech! The last 3-4 months I have been on top of the world. It was all worth it. I can't wait for the next injection. I will try less of a dose this time though.
I was going nuts with not being able to talk past a whisper also, even with all the holiday parties and family get togethers. My wife had to speak for me. Fortunately my wife is very supportive of my problems with SD and understands.
Please don't get discouraged! I feel your pain. It means the Botox is working and you might have an extremely long time of great sounding voice after you get past this stage.
This is a learning experience for all of us, so hang in there, and keep in touch with us.
We are here for each others support.
Hope this helps you feel better.
Raymond
AD/SD (long enough)
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Posted by: Arlyne B ®
05/21/2007, 19:54:11
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The same thing happened to me the first time I got Botox, 17 years ago. I lost my voice completely for five weeks and it was very bad timing regarding my job. (Of course, it's always bad timing!). When my voice came back, it was very smooth. However, the next time I got my injection, the doc thought I might have some AB features, which caused the extreme breathiness, and he adjusted the dosage. You didn't say whether you were diagnosed as AD or AB, or mixed. I also believe you received altogether too much Botox for the first injection, without knowing how you would react. Be patient: your voice definitely will come back and in all probability will be much better than before.GOOD LUCK!
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Posted by: BillE ®
05/22/2007, 14:25:58
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I am relieved to read this post and the replies to it. I had my first injections 4 weeks ago and have been very breathy ever since. My voice is starting to return and is now a hoarse whisper,. but it is very frustrating not to be able to function for this length of time. Two days after the injection I went on 3 weeks holiday to Canada and Hawaii and my wife had to talk for me. In retrospect I should have waited until I came back but I have
waited 12 years to be diagnosed with Spasmodic Dystonia and a further 2 years to find a surgeon who could carry out the treatment and was impatient to see results.I also have Asthma and have been very breathless since the injection, not helped by a week at altitude in the Rockies.I take heart from the replies to this post and am looking forward to a long period with a strong voice.
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Posted by: Hoarse Whisperer ®
05/22/2007, 22:46:35
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Are you sure you really have asthma? Many people with Vocal Cord Dysfunction (VCD) are incorrectly diagnosed with asthma. VCD causes wheezing, breathing problems, and mimics many of the symptoms of asthma. I was diagnosed with asthma and prescribed therapy with bronchodilators, oxygen, and corticosteroids, which were completely ineffective. I was later correctly diagnosed with VCD by my Speech Language Pathologist/Therapist and Primary Care Physician.There is a lot of information on the Internet regarding VCD, especially research work performed by the National Jewish Center for Immunology and Respiratory Medicine. Vocal cord dysfunction (VCD), also recognized as paradoxical vocal cord motion (PVCM), laryngeal dyskinesia, and vocal cord malfunction, is a condition where the larynx exhibits paradoxical vocal cord adduction during inspiration, resulting in any of a number of symptoms that would be expected from extrathoracic airway obstruction, including, wheezing, dyspnea, cough, and shortness of breath. The diagnosis of PVCM is currently being made with increased frequency as physicians are becoming more aware of its prevalence. Most VCD cases are seen in conjunction with other medical issues, even including asthma. I have AB/SD and VCD. The various causes can include: upper respiratory infections, cortical injury, brainstem compression, conversion disorder, brainstem abnormalities, neurological disorders, cystic fibrosis, stroke, ALS, encephalopathy, GERD, and irritant or chemical exposure. Irritants such as ammonia, chlorine, cleaning chemicals, organic solvents, flux flames, and smoke have been linked to the onset of PVCM. Many patients with VCD are wrongly diagnosed with asthma and suffer from unnecessary treatment, such as high dose exogenous steroid and bronchodilator use. Most severely, during acute episodes, many patients have received intubation and/or tracheostomy. Such treatment can be avoided when a knowledge of or suspicion for PVCM is present among the treating medical team. There are many treatment options available, including Botox in some cases. If you think you might have VCD or PVCM, do some research about it, and then discuss it with your medical team. Lori
AB/SD since 2003
Texas
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Posted by: BillE ®
05/26/2007, 11:31:18
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Thanks for the information, on reflection I was diagnosed with Asthma at about the same time SD started. I will do some research and ask the opinion of my ENT specialist when I next see him.
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Posted by: saradshort ®
05/25/2007, 13:40:26
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Hi,
I hear the frustration in your words but also sense that you have quite a sense of humor. Humor can be one of the ways to get through some of the trials we meet along the journey we're on. Hopefully your symptoms will soon subside and you'll enjoy a period of effortless voice.
Waltzing Matilda has long been one of my favorite folksy songs...now I know why.
Best of luck to you,
Sara
AD/SD
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Posted by: wkerby ®
06/04/2007, 19:53:46
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Thanks to all for your informed and kind comments. I am now almost at the two-month mark and my voice is still very raspy. I have no reason to believe that I am a victim of anything but unintended consequences. My physician is apologetic without being defensive or blaming. Here is a sample of my voice from May 25. I mangled the parody song, but didn't think it mattered enough to edit the recording.
Modified by Moderator-LC at Tue, Jun 05, 2007, 18:51:06
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