Spasmodic dysphonia

Posted by romorrill @romorrill, Aug 28, 2011

I have had this for about 4 yrs now. I do recieve botox. The problem is, I feel like I am being choked by something in my throat. My m.d. told me my uvula was huge. When I told my ent dr. he said he had seen worse. When i lay on my sides it feels as if my throat is closed. Horrible feeling! Can someone tell me if this is normal for this condition?

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.

<p>I have Spasmodic Dysphonia of the Vocal Cords and have injections every 4 months to give me a voice.<br /> Looking for someone in the area Brunswick,Ga is where I live. I need to find a Dr. in Jacksonville area<br /> if possible. that gives vocal cord injections.Would like to know if Mayo clinic perhaps has ENT drs. in<br /> this Dysphonia. Would also love to hear from anyone who has this vocal cord disorder. Thanks.</p>

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i have cervical dystonia and also receive botox injections, for many years. i often have minor, could be major, irritating problems with swallowing & choking, especially right after botox, i could choke on my own spit if i don't pay attention. Don't know if this is similar to what you are experiencing but i have so many detailed related issues that i overlook some and often forget to mention them to my neuro, which is what you should do. Get a consult. Hang in there & be nice to yourself. If you are patient you will be amazed at how resilient the body, spirit and mind can when adapting to chronic health/pain issues, i'm practically a pro..

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My daughter has cervical dystonia since 2008 and receives botox inj.She is very discouraged at present because she can find no support.The inj help somewhat for 21/2 mo and the side effects are also difficult to live with/.How do you find relief from pain and spasms and keep up your spirits? She is married ,a mom to a pre teen and a teenager ,is well educated and is working 20-24 hrs week. I feel helpless.Thanks.

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The 'choking' feeling is called Dysphagia. This is a side effect of botox. Your Dr. should be familiar with this, and he/she should have discussed potential side effects prior to your injections.

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Botox can "unmask" symptoms of other diseases...such as myasthenia gravis which has symptoms similar to those of Botox reactions--great difficulty swallowing food, talking--and also muscle weakness. Very few people, however, are affected this way.

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@seaside162

<p>I have Spasmodic Dysphonia of the Vocal Cords and have injections every 4 months to give me a voice.<br /> Looking for someone in the area Brunswick,Ga is where I live. I need to find a Dr. in Jacksonville area<br /> if possible. that gives vocal cord injections.Would like to know if Mayo clinic perhaps has ENT drs. in<br /> this Dysphonia. Would also love to hear from anyone who has this vocal cord disorder. Thanks.</p>

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Hi @seaside162. I was searching this site for Spasmodic Dysphonia and came across your post. Connect has changed a lot since you wrote it in 2011, and I was wondering if you ever found help? I actually live in Brunswick and work at Mayo Clinic in Jacksonville, FL. There is a Spasmodic Dysphonia Support Group meeting in Jacksonville on September 10, 2016.

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Hi @romorrill. I found your post when searching for "spasmodic dysphonia" on Connect. I see that it's been 5 years since you wrote it, but if you are still looking to connect with others with similar experiences, there is a support group in Jacksonville, FL. The next meeting is Sept. 10, 2016. If you would like more info, or the contact information for the group leader, please let me know.

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@seaside162

<p>I have Spasmodic Dysphonia of the Vocal Cords and have injections every 4 months to give me a voice.<br /> Looking for someone in the area Brunswick,Ga is where I live. I need to find a Dr. in Jacksonville area<br /> if possible. that gives vocal cord injections.Would like to know if Mayo clinic perhaps has ENT drs. in<br /> this Dysphonia. Would also love to hear from anyone who has this vocal cord disorder. Thanks.</p>

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Hi, Thank You for your e-mail regarding spasmodic dysphonia. I had been seeing a Dr.Johns at Emory Clinic, but he has moved to California. Haven't had vocal cord <br>injections for almost two years. It was so inconvenient going to Atlanta for those injections. Anyway, do not have much voice without a Dr. available.My Dysphonia started in 1996 and took me over a year and 3 ENT's and with the help of my computer to discover what was wrong with my voice. Dr.Jennifer Andrus who was in Savannah at that time diagnosed and treated me with good injections that gave me good three months of speaking voice, she moved and Dr.Daniels in the same office, who had treated me for a year,saying it was acid reflux, took over her practice, his injections were not very dependable. Dr.Johns was recommended by my Internal Med Dr. his injections were great, had a good speaking voice for 3 -4 mo. It is difficult not being able to speak on the phone and visit with friends and family. Would like to hear from other people who have this. Thank You and let me know any info you can give me. <br>Jan

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@seaside162

<p>I have Spasmodic Dysphonia of the Vocal Cords and have injections every 4 months to give me a voice.<br /> Looking for someone in the area Brunswick,Ga is where I live. I need to find a Dr. in Jacksonville area<br /> if possible. that gives vocal cord injections.Would like to know if Mayo clinic perhaps has ENT drs. in<br /> this Dysphonia. Would also love to hear from anyone who has this vocal cord disorder. Thanks.</p>

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I'm sorry to hear you've had so much trouble finding a permanent provider. Here is the information about the Meeting of the Jacksonville, FL Spasmodic Dysphonia Support Group Meeting.

Please join us for a meeting of the Jacksonville, FL Spasmodic Dysphonia Support Group Meeting on Saturday, September 10th!

NSDA support groups provide a comfortable place to talk. You will hear how people cope, gain new information, and establish contacts. The benefits include a feeling of 'belonging' to a unique group, the opportunity to share experiences of living with SD, and above all, the realization that you "are not alone" in dealing with this disorder.

Discussions can be informative for the newly diagnosed as well as those who have been dealing with SD for a long time. Family members and friends are welcome and can provide a different perspective.

Whether you're a regular, occasional or a first-time attendee, we hope you'll find the time to join us. There is no charge to attend.

When: Saturday, September 10th

Where: Mandarin Library
3330 Kori Road
Jacksonville, FL

Time: 10:00 - Noon

RSVP to Lisa Milligan at lisasmilligan@yahoo.com

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Welcome back to Mayo Clinic Connect, @seaside162. You'll see that the community has changed a bit since you were last here. We've got a new look, and the community is quite active. I moved your messages to the Eye, Ear, Nose & Throat group http://mayocl.in/2br0RWf to help you connect with others who have been talking about spasmodic dysphonia, such as @romorrill. This will also help new members find you.

I hope you can attend the in-person support group in Jacksonville, FL in September. After that event, we hope more people will join Connect to stay connected between meetings :). In the meantime, we'd like to get to know a bit more about you. What changes have your friends and family been able to make to help you stay connected with them as you experience increasing loss of voice?

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