Long-Term Followups for Spasmodic Dysphonia treatment 2013

 

Original testimonials can be found under Written Testimonials 2013. Name and diagnosis will be included here with the date of the long-term follow-up noted and new information listed.

 

FEBRUARY 2013 CLINIC

 

Sharyn: AB/SD diagnosed in 1990 by Dr. Herbert Dedo, and again in 2012 by Dr. Albert Merati, but as AB/SD with MTD: Self managed well by humming and singing into speech until this year. One botox injection with bad side effects and no help to the voice.

 

JANUARY 2014: Sharyn reported that her voice was “hugely improved” and that the clinic was “one of the best investments I could possibly have made, costing me roughly the same as my one Botox shot which was a disaster”. Reported 80% compliance and significantly improved voice production. Voice handicap index decreased from 78 (Severe) to 35 (Moderate), a decrease of 43 points.

 

Gary: AD/SD diagnosed by the Mayo Clinic, Rochester, 2011. Three botox injections with various results, the 3rd having more side effects such as choking.

 

JANUARY 2014: Gary reported that he had been disappointed with his progress to date and that he had resumed botox shots, which helped him slightly. Voice Handicap Index had decreased only 6 points and remained in the Moderate range despite botox treatment. He reported that he was continuing his vocal conditioning and remained hopeful that he would improve more in time.

 

Candace: AD/SD, essential tremor, reflux. The SD was diagnosed in 1993 by Dr. Dougherty in Miami and Botox was recommended.

 

JANUARY 2014: Candace reported that “chronic bronchitis over the last three months has contributed to lack of control over my voice. However, the therapy and counseling received at the clinic definitely gave me a sense of increased voice control. It gave me tools to help the strain and to ease voice production. For the first time, all issues such as reflux were addressed and I am eating a more alkaline diet and taking acid blockers for GERD.

 

She rated her compliance to the program at 50% initially and about 20% now. She had not viewed her DVD from the clinic. Candace rated her voice as slightly to moderately improved. VHI had moved from the Severe range to Moderate.

 

Gordon: AD/SD with gradual onset starting in 1993, diagnosed in 1998 in London.

 

JANUARY 2014: Gordon reported that he felt the voice clinic was definitely a good investment and that coaching in breathing, posture and voice production were lasting helps. He reported 70% compliance to the program but did not view the DVD. He did choose to have another botox injection through the NHS in London, but reported his voice status 17 weeks later. His Voice Handicap Index had decreased 22 points and fell in the Mild-to-No Handicap range at 14.

 

Chuck: AD/SD onset in 2008, diagnosed in 2009; also diagnosed with sleep apnea in 2009, requiring CPAP, confirmed acid reflux.

 

JANUARY 2014: Chuck reported that initially he had improved control over his voice but then slipped back to pre-clinic levels with a very stressful work environment. He still rated his clinic experience as valuable, with the tools in place to regain what he learned and experienced.

 

He rated compliance at 50% and had reviewed the DVD once just after the clinic. Chuck rated his voice as slightly better, but his Voice Handicap Index was significantly decreased at 27 points less than it was before the clinic. Regardless, it remained in the severe range.

 

JUNE 2013 CLINIC FOLLOWUPS

 

SW: AB/SD, onset in 1997 and diagnosed by ENTs and SLPs; Tried voice therapy with several therapists, acupuncture, Chinese medicine, consult with Morton Cooper, one botox injection with some inconsistent improvement in voicing resulting for 2-3 months.

 

APRIL 2014: SW reported that the clinic was a turning point for her and that her voice was released. She rated her voice as significantly improved. VHI decreased from 61 (Severe) to 42 (Moderate), a decrease of 19 points.

 

Sandi: ABSD with tremor; diagnosed in the spring 2010, treated with antacids, botox injection helped the voice but dyspnea was debilitating.

 

MARCH 2014: Sandi did not feel that her voice was better months after the clinic. She attributed this to having too many life changes and not being able to do the voice exercises. She had not viewed her DVD from the clinic and rated compliance at 60%. She still rated the clinic as a good investment for her life and voice despite the lack of improvement to date. Her VHI had decreased 18 points, from 86 to 68, both in the Severe range.

 

MM: AD/SD diagnosed in December 2009 by Dr. Barbara Schultz, two months of voice therapy, one botox injection (“after one month of whisper voice, I could speak but not sing and I could not speak loud or with resonance”) Self managed after reading Connie’s book and saving for a clinic for two years. 

 

APRIL 2014: MM reported improved understanding of how her voice works and some improvement. She stated she had learned not to force her voice. Reported 80% compliance and had viewed her DVD, which reminded her of how she had improved at the clinic. MM rated her voice as moderately improved and VHI had decreased 34 points, from 103 to 69, still remaining in the severe range.

 

Jen: AD/SD with tremor diagnosed in 2002 with symptoms starting in 1999, voice therapy and homeopathy, massage and chiropractic.

 

MARCH 2014: Jen reported 100% more control of her voice even on “bad days” because of the tools she learned at the clinic. She stated that the clinic was a life saver and a good investment for her voice and her life. She rated her voice as moderately improved. VHI had decreased from 81 (severe) to 50 (moderate), a total of 31 points.