Long Term Success of Spasmodic Dysphonia treatment from 2012 Clinics
February 2012 Followups
Michael: AD/SD with MTD with symptoms first noted in late 2009 and diagnosis in January 2010; one week with Morton Cooper, voice therapy, botox injections with varying levels of success, last injection ineffective.
January 2013: 10 months following the clinic, Michael stated that the clinic was absolutely a good investment and he would highly recommend it. “The most lasting helps for me involved coming home and putting (what I learned) into a routine. It changed somewhat with my own tweaks, and along the way I came to an emotional and even spiritual acceptance of my condition. I had been through the stages of grief and was resisting SD and the loss of my singing and speaking voice. I am no longer afraid of this condition. I have accepted that I have/had SD and came to a place where I quit resisting it; the quality of my voice in terms of my ego and how others might think of me in relation to my voice. I stopped fearing it. From that point on, (my voice) really started to improve and all the vocal and breathing work sunk in I could really “let” it work. I developed a successful humming technique that was a huge key to getting better quickly. Participating in Connie’s clinic facilitated all of this and gave me the tools. She encourages you to come up with your own “stuff” – whatever works!
My voice has significantly improved, and I would add to that “sometimes completely normal”. People do not notice I have a voice condition. People who knew me at my worst struggle (and it was BAD) have said how amazed they are at how much better I sound and that I sound like I’m back to normal. Plus, I will never be on Botox again.
Whenever my voice gets a bit ragged, I simply go back to my tools and use them and it always gets better. It doesn’t take much. I am very grateful for Connie, Dennis, and all who helped at the workshop. I am very grateful for my path in this recovery and for whatever moments of insight I have had that helped me along. I am grateful for the spiritual gifts I have been given as a result of this experience.
I do not proclaim myself as a model of excellence but I would like to offer my story of “coming to acceptance and giving up the fight, relaxing into the freedom of acceptance and letting go of ego and self-consciousness.” I came home with the tools and used them and really have come to an improved voice. I feel I need to give back.
Lastly, from the bottom of my heart. Thank you so much!”
VHI-30 decreased from 75 (Severe) to 22 (minimum to no handicap).
Diane: AB/SD following upper respiratory infections 3 ½ years ago, 2 botox injections with severe complications, voice therapy, previous private instruction with Connie and Dennis, followed by thyroidectomy. The surgeon noted the larnyngel nerve tetherd around a large nodule, but there was no vocal fold paralysis.
January 2013: I continue to have difficulty despite making every effort to achieve control over my voice condition. I’ve been 80% compliant and have take advantage of the follow-up and viewed my DVD several times. My voice is slightly to moderately improved and continues to improve. I am now seeing a singing coach and this seems to be helping as well.
VHI-30 decreased 23 points, from the Severe range to the moderate range of handicap.
Kay: AD/SD since early 2008, following a head tremor in 1998 and hemi-facial spasms in 2000. Botox injections twice yearly for 3 years with variable results, voice therapy.
January 2013: Kay reported some very serious health problems this year that were life threatening and took her focus completed off of voice rehabilitation. She had not resumed botox but was considering it to help her communicate more freely with family and friends. We wish her the best in her recovery on all levels.
Kimberly: AD/SD since 1997, regular botox injections until 2003 when she had SLAD/R surgery with Dr. Berke, resulting in a paralyzed vocal fold (medial position) and continued SD in the opposite fold. Tried many alternative treatments such as Reike and acupuncture, and psychotherapy.
January 2013: After the clinic, I speak more and feel less inhibited. I do the voice exercises every day and am able to produce a stronger voice at times. I enjoyed SKYPING with Connie as a follow-up. My voice is moderately improved.
VHI-30 decreased 39 points, remaining in the Severe range at this time.
June July 2012 Followups
Diann: AD/SD diagnosed February 2010, cervical dystonia diagnosed January 2012: Botox injections every 6-8 weeks, massage, chiropractic, voice therapy.
May 3, 2013: Diann reported that while she felt the clinic was a good investment, she had experienced minimal long-term gains. She was unable to carve out time to work on her voice with her demanding job. Eventually, she lost her job and recognized that success could have been more realistic if she had initially taken a leave from work to take care of herself. VHI decreased 13 points.
EP: AD/SD, symptoms began in 2004, initial diagnosis of reflux, then stress-related dysphonia, and SD diagnosis in 2005.
April 6, 2013: Elaine reported increased control over her voice and life 10 months after the clinic. She took advantage of the follow-up with Connie and viewed her DVD. Unfortunately, she became very ill for 6 weeks and it took a long time to recover. She, like Diann, did not take a leave from work, returning to work the day she returned from the clinic. She found it challenging to maintain her workload and focus on voice exercises. She rated her voice significantly improved, but had decided to get a botox shot, which helped to unlock her voice. Elaine plans to continue voice rehabilitation, with supplemental botox as needed.
Beth: AD/SD diagnosed in June 2011, but with voice loss several times a year in her job as a teacher dating back to 1983.
April 7, 2013: Beth reported that the clinic had been a good investment but that she continued to struggle with her SD. She took advantage of the follow-up with Connie and felt she had been 80% compliant. She had not viewed her DVD. Beth felt her voice was slightly improved, and her VHI decreased 12 points. Beth felt that a longer clinic or more instruction would help her to more success. Her job as a teacher has high voice demands, which most likely plays a part in her continued difficulties.
JT: AB/SD, symptoms began in January 2011 following a cold and laryngitis, initial diagnosis of unilateral paresis and gel injection to medialize the vocal fold, 2 botox injections, Artane.
April 27, 2013: JT reported that her voice was moderately improved since the clinic, with less effort and breathiness. She had maintained 75% compliance to her program, taken advantage of follow-up sessions through SKYPE, and viewed her DVD. VHI had decreased 32 points, moving from the severe range to moderate.
Rey: AD/SD diagnosed in 1998, Botox injections every 3 months, Tagamet.
July 25, 2013: Rey reported that his voice was significantly improved; but could have a moderately improved day if he didn’t speak in the morning or exercise his breathing and voice. He felt the tools he learned at the clinic helped him to maintain the improvements he made and that they were sufficient. VHI was not returned.
Christie: AD/SD diagnosed in February 2012: speech therapy, acupuncture.
June 30, 2013: Christie reported that she learned skills at the clinic to aid in relaxation and improve her voice. She reported that the significantly improved control she had over her voice just after the clinic was hard to maintain as the stresses of real life increased. She did feel the tools she acquired helped her to regain control over her voice when it declined.
“I think what helped the most was remembering to use breath support with my voice. When I have bad periods with my voice even if it is tough to bring it up out of my throat, it helps to remember that I need to use breath to support my voice instead of pushing or holding tension in my abdomen.”
Christie rated her voice as slightly to moderately better, best just after the clinic and declining due to lack of steady commitment to daily exercises. VHI decreased from 106 (profound) to 56 (moderate), a decrease of 50 points.
Christie has enrolled in a graduate program in Speech Pathology!
Tanya: AD/SD diagnosed in 1997 at the age of 19, but later she was told that she probably did not have SD, but rather reflux and muscle tension dysphonia. Symptoms had been episodic over the past 14 ½ years, with periods of severely impaired voice and periods of nearly normal voice. Speech therapy with various therapists, bio-feedback, acupuncture, chiropractic, reflux meds:
June 31, 2013: Tanya reported improved control over her voice. She especially appreciated the support of the group, and strategies she learned. She viewed her DVD but did not take advantage of the free follow-up. She rated herself as 15% compliant to the program, with slight improvement in overall voice quality.
VHI decreased a total of 28 points, moving from the upper level of moderate (60) to the lower level of moderate (33).
Mike: Mixed SD with tremor and atrophy diagnosed in 2007: Prilosec, speech therapy for 1.5 years.
July 2013: Mike reported that the clinic had given him more control over his voice and that is was a very good investment. He did not take advantage of the follow-up as he “forgot” but was also continuing to see his local SLP for follow-up. He rated himself 60% compliant to the program he outlined and his voice significantly improved. VHI decreased 36 points, moving from the Severe Range of handicap to Moderate.
October 2012 Followups
S.D.: Gradual onset of symptoms for 3 years, Diagnosed with SD November 2011, prior diagnosis included acid reflux. Reflux meds did not help, short term improvement with hypnosis.
September 26, 2013: I feel my voice is better overall. I still have bad voice days without anything to predict that. There is still a part of this voice condition that is beyond my control and seems to defy any techniques I have learned. I feel the clinic was worthwhile. I met amazing people and I realize that dealing with this voice condition is a journey for me on many levels – physical, spiritual, social and emotional. I feel I am healed because I did what I needed to do for me, even if my voice is not completely healed. My voice is moderately improved since the clinic. (Did not return VHI)
Joanne: AD/SD diagnosed in 1991: botox injections in 1995, then resumed in 2010 but with limited improvement, voice therapy, massage, acupuncture, chiropractic, hypnosis
September 15, 2013: I feel more control over my voice and my life a year later (without botox). I was about 60% compliant and I feel that my voice is still improving. The clinic was great and I think by keeping up with the progression of individuals and open minds on the healing process can only move us in the right direction. You gave me the power of HOPE, and that is wonderful. Thank you.
VHI decreased 39 points, moving from the Severe range of handicap to Moderate.
Kim: AD/SD, symptoms began in 2001-2002, diagnosed with allergies, and then SD by the NIH in 2003, speech therapy, botox injections every 3-6 months for 8 years, holistic chiropractor and supplements, psychotherapy.
I would love to share my experience with others. My email is firstname.lastname@example.org. I encourage others with SD to come to the Free to Speak Clinic. Thank you Connie, Dennis, and Christine!
October 2013: I definitely have more control over my voice, which has improved tremendously. I have a new job and people don’t even notice that I have a voice problem. I have some problems if I have to increase volume in a noisy environment.
The clinic changed my life, my self-confidence, and self-esteem. I viewed my DVD and it was helpful to remind me of what Connie and I did during my sessions. Connie helped me create a Youtube of my progress using SKYPE. VHI decreased from a score of 100 (profoundly handicapping) to a 12 (no handicap); a total of 88 points decrease.
Sarah: AD/SD symptoms began in May 2011, first diagnosed with Muscle tension dysphonia and acid reflux, speech therapy, voice rest, laryngeal physio, medications, Alexander technique, acupuncture, botox recommended but declined.
September 2, 2013: The clinic was absolutely a good investment that I would recommend with anyone living (with SD). The clinic unexpectedly helped me cope in many more ways that I could have anticipated, and helped me get to grips with wider ranging problems than just the SD. While I still live with SD, I am able to embrace it and carry on without it being such a burden. The holistic approach at the clinic was a lasting help, looking at the entire person, and not just vocal cords has helped me quite a lot. I discovered things about myself that I didn’t know, and also learned to accept and understand things about myself that I didn’t quite like. I’ve made massive changes in my life since last October. I think the major thing is acceptance. I know it sounds strange, and almost as giving up the fight, but actually by accepting my vocal changes and relaxing towards them by giving up the struggle and fight as Connie pointed out, it has become much easier to speak fluently. And, in general, I am much, much happier with my life now.
My voice is moderately improved all the time, and sometimes significantly so. This doesn’t always last, and I’m happy to live with a condition that is cyclical. I have become aware that my voice is a barometer of my emotions, and the soonest sign of any stress will trigger a bout of worsened SD.
VHI decreased 43 points, moving from the Severe range to Moderate range of voice handicap.
Jan: Gradual onset of symptoms in 1995. Diagnosed with SD in August 2011. Botox recommended and declined.
August 30, 2013: I feel confident that I have the tools to continue freeing my voice. I am speaking more often with my clearer, more fluid voice, though it might catch in times of tension. I feel more empowered and I am no longer a victim of my vocal habits. I feel that giving myself the time and attention, with a group of like-affected companions, was a great gift. Being with others who have known the embarrassment and frustration of a voice that won’t do what you want it to do was also very heart-filling and comforting.
The specific vocal strategies I learned from Connie are what I have carried long-term. Things you would tell me like “bring that sound up and forward” continue to be very helpful.
My voice is moderately improved. VHI decreased 22 points.
Paul: Voice changes started in the fall of 2010, with roughness and hoarseness, progressing to severe symptoms in February 2011. Diagnosed with AD/SD by four specialists. Reflux medication, speech therapy, three week consultation with Morton Cooper, psychological consultation.
September 2013: Paul worked diligently on his program but did not find enough relief with voice rehabilitation exercises alone to allow him to function in his job. Through the use of botox injections, which he started three months after the clinic, he found relief from the strain, and a satisfactory voice. Gradually, he was able to go longer between injections and voice quality continued to strengthen.
November 2012 Followups
Bonnie: AD/SD diagnosed in August 2012 after symptoms for 5 months: Botox injections initiated in September, which helped temporarily.
OCTOBER 2013: Bonnie stated that she felt she had learned that she could control her voice if she learned the triggers to help in certain situations. She stated she was 50% compliant to her contract. She came to the clinic during a time in which she was having botox injections, and had discontinued that treatment. Hence, she felt her voice was worse at the time of long-term follow-up. Her Voice Handicap Index had no significant change and was still in the Severe range.
Mary: AB/SD, symptoms began in 1998. Speech therapy and counseling as initial diagnosis was MTD.
DECEMBER 2012: Mary stated that she did not experience a significant change in her voice long-term. She felt that a longer period of individual therapy would have been of more benefit than a clinic shared with multiple people. She was unable to take advantage of the computer program or SKYPE for follow-up, hence limiting her support after the clinic. She felt that the clinic provided too much information, and would be better to have a more narrow and direct focus. Her VHI increased by 5 points.
Walt: AD/SD with symptoms starting in the early 1990’s and diagnosed in 1996, Botox injections yearly or semi-annually at the Mayo Clinic in Rochester.
JANUARY 2014: Walt reported definitively more control in his voice. “I felt the clinic was a good investment because it brought together others with the same problem and so many different ideas and techniques were offered.”
Walt did not use his follow-up time or view the video, however, he rated his voice significantly improved, and sometimes normal a year after the clinic.
Voice Handicap Index decreased 24 points, moving from the Severe to the Moderate level.
Barbara: Previous tracheal stenosis; 6 dilatations and then re-section and reconstruction of trachea December 2010.
JANUARY 2014: Barbara reported limited control of her voice a year later. She felt the clinic was a good investment because of the confidence the staff had in her and the take-home materials. She did not take advantage of the follow-up due to family and business issues and reported 30% compliance to the program. She rated her voice as slightly improved, but Voice Handicap Index decreased by 25 points, which is a significant decrease. She stated that due to storm destruction of her family business buildings, she had little time to spend on voice rehabilitation.
HM: AB/SD with onset in July 2011, diagnosis in June 2012. Botox was recommended but he declined.
FEBRUARY 2013: Hunter reported improved control over his voice and breathing and that the voice intensive was a good investment. He rated his voice improvement as significant and that stress management and breathing/relaxation were the most lasting helps.
Voice Handicap Index decreased 35 points and moved from the Severe to the Moderate range.