Long-Term Followups for Spasmodic Dysphonia treatment 2014
Due to Google Adwords changing the campaign type, rendering the website virtually invisable with a search online, only two clinics were completed in 2014. As business declined, it took Connie 6 months to research the problem and correct it. When a website goes from Page 1 to Page 6 at best, and clicks from over 400 monthly to 40, the business will take a hit. Fortunately the problem was eventually corrected and 2015 is going strong. Here are the Long-Term Follow-ups that were received for 2014.
Original testimonials can be found under Written Testimonials 2014. Name and diagnosis will be included here with the date of the long-term follow-up noted and new information listed.
FEBRUARY 2014 CLINIC
Shirley: AD/SD diagnosed in November 2011, with onset one year before that. Voice therapy and 2 botox injections were unsuccessful (swallowing problems and unable to sing)
APRIL 2014: Shirley reported a decrease of 49 points on her VHI, indicating a shift from the Severe Range (102) to the Moderate Range (53). She rated her improvement overall as moderately improved, and felt that her attitude regarding her voice problems was much better.
Dan: AD/SD with gradual onset, diagnosed in 2009, treated regularly with botox for three years with minimal benefit. He sometimes experienced breathiness for up to 6 weeks. Reported significant improvement in breathing and voice, and rated improvement at 50% at the clinic.
JANUARY 2015: Dan reported improved control over his voice and his life, especially when relaxed, rested and in a quiet environment. He still felt that challenging situations such as when stressed, tired, or speaking in noise were still problematic. "I learned a lot, but have put it to limited use. The more I follow the prescribed regimen, the better my voice is. I plan to slow down at work after this year and believe that I will then have a good chance to really improve my voice." He rated his improvement as moderate. He rated his compliance as 40% and watched part of the DVD provided for follow-up. VHI score did not statistically decrease (8 points) but he moved from the Severe range to Moderate.
Kimmy: Diagnosed with severe MTD, possibly SD in December 2010. (This therapist’s assessment revealed an oral dystonia involving the tongue and possibly the soft palate, with use of the posterior tongue and palate as a sound source). Kimmy reported that her voice broke as she was singing in 2000, first in singing and later in speaking. She noted problems with voice strain and hoarseness dating back to her teenage years, and a history of surgery for vocal fold polyps. She tried voice therapy and Alexander technique, as well as acupuncture.
APRIL 2014: Kimmy reported, "My voice, I know it is a lot better! I have phases which can last from days to weeks where I am good. I can talk softly now, something I could not do for years. The clinic was incredibly helpful, but breaking my leg a month later really set me back. I was in incredible pain and under a lot of stress. I was stuck on a couch and could not work for 6 weeks. I could not breathe. I was on pain medication and slept most of the time." Kimmy's VHI score had decreased by 53 points, from a Profound 97 to a Moderate 53. She had landed a teaching position and reported "I have more confidence and more effective ways to help myself."
She rated her compliance to the program at 0. She had viewed her DVD from the clinic and found it helpful.
Barb: AD/SD with sudden onset in 2002. Two ENT doctors diagnosed Muscle Tension Dysphonia and she had months of speech therapy that did not help. She was then diagnosed with SD and received regular botox injections for 9/10 years with variable results. Barb stated that “every other shot missed but there was improvement. Problems swallowing developed”
FEBRUARY 2014: Barb returned to a very low (sub-clinical) dose of botox that she reported made all the exercises easier. When she attended the clinic, she was one month post botox, yet her VHI-30 score was 84 (Profound). Her score had decreased 50 points, to the Moderate range. She felt that she was moderately improved, but moving toward significantly improved. She had not viewed her DVD or taken advantage of free follow-up and rated her compliance to the program 50%. She stated that "I think the clinic was a good investment, absolutely. Just being with others who understood and dealt with this was great. It was also helpful to have an optimistic approach."
Connie S: Hoarseness, hyperfunction, incompetent larynx diagnosed in September 2012, but with onset in 2010. Voice therapy with inconsistent results, acupuncture. (This therapist’s assessment was suggestive of Muscle tension dysphonia). Connie had significant improvement in breathing and voice. Lost to follow-up
Bill: AD/SD, onset in 2005 and diagnosed by 2 ENTs and 2 SLPs. Bill felt that his voice improved 40% at the clinic and that he learned better breathing with less forcing of his voice.
APRIL 2014: Bill reported that he had been improving until a back injury impeded his breathing and stopped his daily practice. He signed up for an Advanced Mini-Clinic last year to get back on track, but subsequently he re-injured his back and was unable to attend. He stated that the back injuries resulted in compliance of 90% decreasing to 20%, and at the current time, he does not feel any improvement in voice quality. VHI decreased slightly, from 107 to 90, but the score remains in the Profound range of handicap.
JUNE 2014 CLINIC FOLLOWUPS
Darlene: AD/SD onset in January 2001, initial diagnosis of acid reflux, followed by possible SD by a neurologist. Diagnosis confirmed by Dr. Andrew Blitzer, who administered botox every 3-9 months as needed. Botox became less effective over time.
APRIL 2015: Darlene reported that her voice is working well about half the time, with continued problems the other 50%. Hence, she reported a range of improvement/ good days and bad. Following the clinic in June, she returned for a Botox injection in September, then she maintained a better voice for 7 months. She was experiencing a lot of variability in voice production, so she rated her improvement at anywhere from moderately improved to normal. She stated that definitely, the clinic was a good investment for her voice and life. She took the VHI-30 on a bad day (decrease of 15 points from 68 to 53, moving from Severe to Moderate) and on a good day (decrease of 34 points to 34, still Moderate). She was considering another botox injection.
Kevin: AD/SD, onset in late 2009, took over a year to be diagnosed. Botox injections from February 2011 until January 2014 with variable results. Voice therapy. Initial consult with Connie, privately and felt he was “cured”, but regressed when he returned to work.
MAY 2015: Kevin reported that the clinic was a good investment, but that he continues to fluctuate in fluency. He stated that he was, overall, more relaxed and accepting of the condition. He stated there was great validity in connecting with others with SD and that he learned to breathe more effectively and to stop fighting the tightness. He rated his compliance at 66% and did not watch the DVD provided for follow-up. He rated overall improvement at moderate, but fluctuating from none to significant improvement. VHI-30 had decreased by 53 points, moving from a Severe range to a Moderate range of handicap. Two months post clinic, his VHI was 31, almost to the Mild range. The journey continues, and Kevin has chosen to try small doses of botox to facilitate his progress.
Michael: Focal dystonia/SD. Isolated incident 1993; gradual progression 1999, with more consistent dysphonia since 2000. Voice therapy. Neurology consult and botox to base of tongue twice, which caused dysarthria. Various drug therapies ineffective. January 2011, botox was administered at the Cleveland Clinic until July 2013 with various results and losing effectiveness over time.
APRIL 2015: Michael reported a better understanding of his dysphonia and understanding of the tools to access his natural voice. He reported 50-60% compliance to the program prescribed and viewed his DVD. He rated his voice as slightly better, but had experienced a decrease of 44 points on his VHI-30, moving from the Severe (81) to the Moderate (37) range.
Naomi: AD/SD Onset May 2010 and diagnosed in May 2011 by Dr. John Rubin in London. Botox injections every 3 months since June 2011, voice therapy, laryngeal massage, osteopathic treatment, acupuncture, psychotherapy, yoga.
APRIL 2015: Naomi reported HUGE control over her voice and life since attending the clinic. (110% better) She stated that the clinic changed her life and gave her renewed hope. She reported being 95% compliant to her program and rated her current voice as Normal.
"Whilst it can waiver and is a little more effortful when I have a cold, I really don't think people would notice these days that I have an incurable voice condition. It have been over a year now since botox and that is a brilliant hurdle."
Naomi experienced a decreased VHI score from 89 (Severe to Profound) to 12 (within normal range for vocally healthy individuals). Total decrease was 77 points.
Connie saw Naomi in London for a brief follow-up in February 2015, just about two years after the initial consultation there before she attended the clinic. The transformation of her voice was amazing. She sounds absolutely lovely.
VO: AD/SD with essential tremor, Fall 2008 at the Mayo Clinic in Phoenix. Botox was initiated February 2009 and continued through July 2013 with varied results, good voice 3 months at best and no improvement at worst. She had some voice therapy as well.
MAY 2015: While VO had good results at the clinic and a few months following, she was unable to maintain it, became depressed and gave up. She rated her compliance to the program at 5% and felt that currently her voice has not improved. VHI remained in the Profound range, decreasing 8 points, from 111 to 103. She did state that, "I know I am able to change my voice to improve it using a higher pitch. I liked the holistic approach and camraderie with other clients."