Long-Term Followups for Spasmodic Dysphonia treatment 2015

 

 

MARCH 2015 CLINIC

 

Irene: AD/SD with tremor, onset in November 2013, diagnosed in Caracas, Venezuela. Tried acupuncture and medication (Inderal), which were helpful. 

 

MARCH 2016:  Irene reported 80% improved control over her voice. She said the clinic "was the best investment ever" and that the most lasting help was the knowledge that the condition could change, and seeing Connie and others speaking well even with Spasmodic Dysphonia. She viewed her DVD and reported 80% compliance to her program. She rated her voice as significantly improved since before the clinic. 

 

Genia: AB/SD with tremor, onset October/November 2013.  One botox injection left her without a voice for several months. She also tried acupuncture 3 times weekly for 3 weeks, specific to voice loss.

 

FEBRUARY 2016: Genia reported improved control over her voice, but noted that it "comes and goes" and that is it a process. "I do have the tools to use to help me and I feel hopeful that slowly I will have an improved voice. I would be in a horrible state without the clarity, information and support the clinic offered me. It is the best investment I could have made!  Just meeting others with SD and not feeling so alone and hearing others' stories was a big help. The fact that Connie has recovered from SD herself gives the clinic the credibility that no other clinic could match. The holisitic approach is key; massage, yoga, group talks and individual coaching laid the groundwork for a sound recovery program. 

 

I am still processing how all those pieces work together and are critical in improving my voice. I have constant 'go tos' that are particularly helpful. The whole concept of neuroplasticity and 'finding our new groove' makes sense to me and keeps me believing that this will work as long as I keep searching for that 'easy voice' which I have not nailed down consistently yet, but I WILL."

 

She rated her voice as slightly to moderately improved, but with a lot less panic and with tools to move forward. Moments of VERY GOOD voice keep her going. VHI had decreased 24 points. 

 

"I honestly can't think of how you could make the clinic any better. I am so grateful for what you do for so many of us. You are a Godsend."

 

Glenn: AD/SD, onset March 2013, initially diagnosed with nodules, then Muscle Tension Dysphonia, acid reflux. In December 2014,  a different doctor diagnosed Severe Dysphonia, at least partially due to Spasmodic Dysphonia. Glenn tried voice therapy with several different therapists and anti-depressant medication. He had one period of remission for about 3 months in the winter of 2014. 

 

JANUARY 2016:  Glenn stated that the clinic was a good investment for his voice and life and that he obtained the tools to enable him to improve his voice. He estimated 85% compliance to the program, had viewed the DVD, and taken advantage of the follow-up. He rated his voice as moderately to significantly improved, depending on his stress level.  VHI decreased 23 points.

 

Rhonda: AD/SD April 2004; diagnosed initially with acid reflux, allergies, and eventually with SD.  She tried voice therapy and later botox injections, which, after a breathy voice loss period, resulted in good voice production. She continued with botox injections, with inconsistent results.  She was looking for an alternative.

 

DECEMBER 2015: Rhonda stated that the clinic was a good investment and that she had improved control over her voice. She felt she had recovered a functional voice and no longer needed botox injections. She accepted that her voice did not have to sound perfect. She felt that she gave up her "frustrated victim mentality", learned to relax and use the tools she learned to improve her voice. She stated that she was about 33% compliant to her program and rated her voice as moderately improved. VHI decreased 25 points.

 

Linda: AD/SD onset 2001, first diagnosed with allergies and asthma. She had voice therapy and singing lessons. A voice therapist suggested botox injections, which she initiated in 2003. After a whispery phase, the treatments worked and she continued to have injections every 2 months. She continued botox treatment for 12 years, but when she moved to Durango, Colorado, continuing this treatment was very difficult due to the distance to a provider.

 

DECEMBER 2015: Linda stated "I wish the voice clinic had been more helpful but I couldn't seem to dedicate enough time each day. I do believe there is merit to the program and I hope to put the tools to more use some day. I tried very hard the first few months, but was discouraged when I didn't hear improvement. I found it difficult to be compliant. I don't believe my voice has improved. Perhaps I needed a longer clinic, several weeks and then continuing via computer or phone". VHI had increased 5 points.