Spasmodic Dysphonia Bulletin Board

mother with spasmodic dysphonia needs help
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Posted by: janey ® 07/25/2005, 20:21:35

thank you to all that responded to my last post. My mother recently saw the ENT doctor who put the scope down her nose to view the vocal chords. My dad was watching on the camera and the doctor pointed out that the vocal chords were open. He said she does not have spasmodic dysphonia. Now we don't know why she talks that way and can not even get the words out most of the time. she can say yes and no pretty easily, but sentences are never completed as she just gives up. the doctor suggested going to UCLA to Dr. Berk. Does anyone know him?? I'm not sure what he would be checking for. now we don't know where to go for other opinions. it seems that the speech therapist was not correct or else the doctor is not correct. possibly it is due to her mini stroke but in that case doesn't speech therapy help?? anyone have any suggestions.?? Maybe something with her neck??? thank you

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Re: mother with spasmodic dysphonia needs help Re: mother with spasmodic dysphonia needs help -- janey Top of thread Archive Posted by: kim ® 07/25/2005, 22:14:28 if the vocal cords are open, sounds like abductor dysphonia. speech therapy is recommended for stroke victims. i have abdutor dysphonia and my vocal cords are open. sometimes i can't finish sentences either (usually, i can not). if she has something wrong with her neck it should show up on an MRI. i do not know Dr. Berk. but i live in houston ( with the famous Medical Center), i have great dr. referrences here. | Recommend | Alert Where am I? Original message Top of thread Current page Re: mother with spasmodic dysphonia needs help Re: Re: mother with spasmodic dysphonia needs help -- kim Top of thread Archive Posted by: FLDAYVID ® 07/27/2005, 21:53:41 I was diagnosed with acid reflux by my ENT after doing a Stroboscopy. I then went to an Otaralyngologist who specializes in SD who later diagnosed me with AB/AD SD. I have had several Botox injections which seem to be helping. I'm convinced that I do have SD and have all the symptoms. I suggest a second opinion for SD. David - Florida | Recommend | Alert Where am I? Original message Top of thread Current page Re: mother with spasmodic dysphonia needs help Re: mother with spasmodic dysphonia needs help -- janey Top of thread Archive Posted by: Mary Bifaro ® 07/26/2005, 07:30:59 Dear Janey, Dr. Gerald Berke, MD's contact information is listed on the NSDA website at www.dysphonia.org. Go to the section under healthcare referral. Dr. Berke is Professor and Chief of the Division of Head and Neck Surgery at UCLA. He pioneered a denervation reinnervation surgery for adductor spasmodic dysphonia in the 1990s. Good luck to you as you continue to address your mother's medical problems. Sincerely, Mary Bifaro Abductor SD since 1987 Charlotte, NC | Recommend | Alert Where am I? Original message Top of thread Current page Re: mother with spasmodic dysphonia needs help Re: mother with spasmodic dysphonia needs help -- janey Top of thread Archive Posted by: Lynne ® 07/26/2005, 18:23:34 Hi Janey, I re-read all your previous BB posts and caught a few items from this one, regarding your mother's condition. Las Vegas, 81, won't post, Wang, Berke, etc. Although geography seems to be a concern, the most important element of your postings is that you are a very supportive daughter. You are your mother's prime advocate, and you're doing a good job on her behalf. For those of us who advocate for voice patients, you are doing exactly the right thing. When people can't talk or represent themselves, they need somebody to speak up for them, as you are doing. We, on this BB, would all be so lucky to have someone like you advocate for us. Welcome to the SD-BB. Dr. Wang has treated me and Dr. Berke is well-known in the SD community. Many of us in this forum have met him and been treated by him. He speaks at patient symposiums and medical conventions, on behalf of voice procedures. You didn't mention who mom's doc was (the doc who put the laryngoscope down her nose), but the issue of isolation and depression, in not being able to speak (no matter what exact permutation we have or how old we are) is life-affecting for anyone. If there is any way you can get your mom to an oto or an SLP who specializes in geriatric (sp?) vocal conditions, it might help. If the doc she saw says she doesn't have SD, she could easily have Bowed Vocal Folds or a paralyzed cord? Both of those conditions would result in "open cords" (glottal gap), and the situation/symptoms you have described. SD is the most rare and the worse of vocal disorders, so if she doesn't have SD --- that's good for her. We're here to help, on this BB. Please write me off the BB for additional information. Bowed vocal cords/folds (they lose elasticity as we age, and then can't come together) are common in the elderly. Janey --- Good Luck. Your mom is very fortunate to have you as her personal advocate. We should all be so fortunate to have someone as caring as you speaking for us, when we can't represent ourselves. Please keep us posted on your mom's condition. --Lynne (AD-SD; RLN surgery; PVFM; Northern California) | Recommend | Alert Where am I? Original message Top of thread Current page Re: mother with spasmodic dysphonia needs help Re: Re: mother with spasmodic dysphonia needs help -- Lynne Top of thread Archive Posted by: janey ® 07/28/2005, 10:18:45 thank you Lynn for your helpful information. what is an oto? what is SLP? The doctor she went to was an ent and I forget his name (Nasari ?) but he never mentioned anything about bowed vocal chords. my dad will not take her to UCLA because it is just to far for them from Las Vegas. now he is taking her to a specialist for elderly in rehabilitation and neurologic problems, Dr. Dean Mondell. He knows my mom from her back surgery and gave her the physical rehab post surgery. my dad thinks she should be admitted and then that will force her to do physical therapy for 2-3 weeks because he can't make her walk anyplace. she even cancels her hair appointments sometimes. he thinks now that maybe her voice will come back better when she feels better about herself. so if she does have bowed vocal chords, do you know what you do for that?? thanks for your help. | Recommend | Alert Where am I? Original message Top of thread Current page Re: mother with spasmodic dysphonia needs help Re: Re: mother with spasmodic dysphonia needs help -- janey Top of thread Archive Posted by: Lynne ® 07/29/2005, 16:06:36 Hi Janey, Please feel free to write me off the BB for additional and specific information (L7martinez@aol.com) and sorry about the abbreviations. "Oto" is "otolaryngologist." That term is usually used to replace the term ENT (ear, nose and throat doctor). The reason why most of us experienced voice patients refer to "oto's" rather than "ENT's" is that otolaryngologists tend to be more specialized in vocal conditions, and some of the private-practice ENT's (however skilled they might be) may specialize in general topics and not know much about the voice, specifically. "Voice" and "the vocal folds" are such a specialized field (growing moreso) that it's best if we voice patients see an "otolaryngologist" (especially one associated with a university, where research on the voice mechanism takes place) than a local ENT. Some of those local folks are still putting tubes in toddlers ears (as part of their speciality) and aren't as experienced in diagnosing and treating vocal disorders as we might like. Also, a patient is more likely to struggle for months/years getting a firm diagnosis if they are not going to a practitioner who specializes in voice. "SLP" is Speech Language Pathologist. Again, your mom may need one who is experienced in vocal therapy. That is distinct from speech therapy (since you say it's not a stroke). It is possible an ENT might not be familiar with bowed or paralyzed cords. If by chance she does have bowed or paralyzed cords, there are treatments for that (such as fat injections) but at her age, good vocal therapy might be the way to start. Do you also live in Las Vegas? I'm sure that would help, in advocating for her with the doctors. Make sure to ask them to test for those two things though ("bowed" or "paralyzed" cords). With what you said about "open cords," those two conditions could be a possibility, especially if the doctor says she doesn't have SD. Good luck and keep up the supportive work on behalf of your mom. She's so lucky to have you in her corner. --Lynne (AD-SD; RLN; PVFM; Northern California) | Recommend | Alert Where am I? Original message Top of thread Current page Re: mother with spasmodic dysphonia needs help Re: Re: mother with spasmodic dysphonia needs help -- Lynne Top of thread Archive Posted by: janey ® 07/29/2005, 22:15:08 thanks again for the clarifications. I do not live in Las Vegas so mostly my dad is taking her to these doctors but with no help from any of them. she did start speaking very slowly after she had back surgery and then we found out that she did have a stroke during surgery. we did not get speech therapy soon enough. when my dad finally got someone, I guess my mother did not want to follow thru with the exercises at home. time passed and she got worse. we all wondered why she just can't get the whole sentence out. my dad tries to finish her sentences. she gets very mad sometimes. I haven't even talked with her on the phone lately. I tell my dad to put her on and she says No! my sister said she said hello to her on the phone last week. anyway I will tell my dad about these other things you mentioned. Right now he is following up on her other problem of feeling tired all the time and not being able to walk much with out taking a rest. I would like to try get her a good speech therapist but it was the last one that thought she had spasmodic dysphonia so now I think my dad is just forgetting that option. thanks again for your help. | Recommend | Alert Where am I? Original message Top of thread Current page Re: Thanks Lynne Re: Re: mother with spasmodic dysphonia needs help -- Lynne Top of thread Archive Posted by: Colleen ® 08/07/2005, 11:00:27 Hi Lynne, This BB is so fortunate to have you! I love reading your posts and replys! Colleen AB/SD NE | Recommend | Alert Where am I? Original message Top of thread Current page