4. Alternative therapies

Oh, how I wanted a pill that would cure me of this ever-present voice disorder. The hope for a medicine cure probably comes from both the abundance of pharmacists/ pharmaceutical company employees in our family and the hope for an easy fix. Conversely, I was skeptical of medication such as Botox for a few reasons. It’s a toxin, one that is a temporary remedy and needs to be repeated every few months (if it works) to help relieve the laryngeal spasms. I’ve read about people who’ve had some disastrous side effects, as the Botox injections might effect other muscles in the throat area. 

Adding to my skepticism was my experience with hormone replacement therapy. I went through menopause early, at age 45, and began taking hormone replacement therapy at that time to prolong the effects that menopause would eventually have.  Eight years later, the medical study came out which told of the possible effects of HRT on women’s physical health (specifically the heart, and cancer). I stopped taking HRT, and just coped with menopause in my early 50’s. When Botox was suggested by doctors, I couldn’t help but wonder if there will be a study telling us of the long-term effects of Botox. Since this is not a life-threatening condition, I decided to explore alternative therapies first. Thanks to the suggestions of family and friends, I began my various attempts with alternative practitioners.

Functional Kinesiologist

I sincerely believe in the interconnectedness of our mind and body and want to find someone who can approach voice disorders in a holistic perspective. Thus, the recommendation of a functional kinesiologist was a hopeful lead.  This practitioner had never worked with someone with spasmodic dysphonia, but was willing to try to help me. These visits incorporated some cranial adjustments, muscle testing and even some massage therapy. I began taking the prescribed nutritional supplements and had allergy testing. This testing for food allergies/sensitivities through blood tests showed a number of significant allergens. I changed my diet and eliminated certain foods, which had never bothered me before. Again, lots of money was spent, but after a few months, I didn’t see any changes in my voice problem from the adjustments, supplements nor change in diet. My doubt was reinforced when I spoke with a friend who is a nutritionist and knew of this practitioner. She, too,  questioned many of the recommendations. Other than my voice disorder, I was feeling fine, so I chose not to continue with this therapy.  

Voice Doctor: Following online research, then watching his DVD and listening to a tape, I had a consultation with Morton Cooper.  Dr. Cooper is not a medical doctor, but his specialty is speech and vocal disorders. I was heartened by his past experience with spasmodic dysphonia patients. He talked about correct breathing, reverse breathing and the necessity for concentrated therapy. His perspective is on the mechanics of speech, that this is not a neurological problem and how the ENT medical community does not support his success. With the hope that his success with others would also include me, I went to him for long therapy sessions. The therapy sessions focused on vocalizations and breathing techniques yet were tedious and very costly. After about 6 weeks, I chose to stop these voice therapy sessions as I wasn’t feeling/hearing much difference. 

Acupuncturist

I had never had acupuncture before, but was very open to this recommendation. For years I had read about and used some forms of acupressure, and believed in its premise. So, I met with an acupuncturist, who, though she had never worked with someone with spasmodic dysphonia before, was willing to see if it helped. I had a number of sessions, even with electrical current , and sometimes felt generally better for a short time afterwards. But, again, there was no difference in my voice. The chi was flowing, but my voice wasn’t working.

Breathing musically

I’ve never been musical (except singing with young children who don’t mind if you can’t sing) but one of my favorite instruments has been the harmonica. It must go back to my Chicago roots. As I considered my breathing in relation to my voice, I thought that maybe doing something like playing the harmonica might help.  I already had one harmonica, and another one came with a ‘how to play the harmonica’ DVD. As I began playing, my 3-year old granddaughter showed interest, so we became a duo. I put on blues music and we play the harmonica. Great fun, but there was no difference with my breathing and voice.  Perhaps playing the blues is better than feeling it with this problem.

Next: Seeing another specialist, in search of an answer….

3. Medical testing and discoveries

Thinking back to when possible signs and symptoms of a voice disorder appeared, I recall about five years ago when I was feeling upper chest discomfort. At that time, asthma, anxiety and thyroid problems were ruled out, and my blood pressure was fine (it’s always low).  These waves in my upper chest to throat area were happening randomly and not during exercise.  So, my doctor asked for an EKG…. It was an interesting experience; nothing abnormal appeared and my heart appeared to be fine. A few years later, I had new health insurance and a new doctor (who was actually a doctor that I had a few years back and knew me to be in good health). Now, my voice was going in and out of strength and my doctor heard the changes in my voice. The tests began...

• First was a breathing test, with a spirometer.  This machine tested my lung capacity and the amount of air that I was producing as I breathed, and nothing abnormal appeared.                                 

• Some time passed, and my voice was getting progressively inconsistent . I began doing research online, and made some discoveries:

         1.there were others who had a similar problem
         2. it’s more common among women
         3.there’s  a high percentage among Ashkenazi Jews (like myself).

Surprised, I contacted my relatives to see if anyone recalled  family members who had a vocal problem.  I then went back to my doctor with this new-found knowledge. I found the disorder ‘spasmodic dysphonia’ online, and was somewhat relieved that I wasn't imagining the problem.  

• Next step, a referral to a local ENT specialist. Before I knew it, this doctor put a scope in my nose and down my throat to see what was going on. He said that there were no visible growths: nodules, polyps, or thank goodness, signs of something abnormal like cancer. As this doctor was talking into his dictaphone the whole time,  he never labeled the problem and said that I need to see a speech therapist.

• Then, there were weekly visits with a speech therapist at the local hospital. I learned various exercises and suggestions for a healthy throat. A friend, who is a speech therapist, was kind enough to also meet with me to try to alleviate the problem.  These methods might have worked with a different situation, but it just wasn’t making much difference in my vocalizing.

• After no progress, I then got a referral for the ENT dept. at UCLA. I was hopeful that I would now find out what was wrong, and what could be done about this voice disorder. So, I had a second endoscope exam, this time with a team of doctors. The doctor then said, looking at the monitor, “this is classic spasmodic dysphonia”.  One of the doctors admitted that it might be genetic, but nevertheless, the head doctor said that there’s no cure. I could either have Botox injections into the laryngeal muscle, which he was ready to do at the time, or surgery. He explained how the surgery would re-route a nerve in my larynx.

 I said “ thank you, but I need to think about this” and left.

Next step….. Alternative therapies

2. In the beginning.....

In the spring of 2008, I was working both as a preschool director and a community college instructor,  teaching child development.  At that time, I had been teaching adults for about 5 years, and working in early childhood settings for over 30 years. I relied on my voice, but in different ways.  During that semester, I began noticing that my voice would sometimes crack, or ‘lose steam’, while lecturing  at the college. I attributed that to allergies. Ever since I was about 8 or 9 years old, I’ve dealt with environmental allergies. I remember always having a box of tissues with me at summer camp in Wisconsin when I was a kid. The scratch tests revealed allergies to so many things, such as dandelions and tree pollen. All  I could do was take antihistamines every summer-fall.  I’ve never been plagued with sinus headaches or earaches, but colds often resulted in laryngitis. 

For a few months, as I was noticing this occasional change in my voice, no one else seemed to be aware of it. I recall asking family members or co-workers.  I think that because the full use of my voice would come and go (usually during teaching a college class), they just hadn’t heard what I heard yet. After a few more months of this inconsistency, of not being able to get a hold of my voice and not finding a way to get the right pitch, it was a friend who asked me when I was going to see a doctor. I had to admit that something was going on, unlike having laryngitis which eventually went away. 

So, in retrospect, I am now thinking that these might have been some factors influencing my voice disorder: life-long allergies, 50 years of antihistamines and projecting my voice in a college classroom. I had to make the difficult decision that, unless something changed for the better, I couldn’t  teach at the college the following semester. 

 

Coming up…. Medical tests

1: My Story

For the past two and half years I’ve been on a mission, a mission to find my voice. As a person who has always enjoyed trying to figure things out on my own (not always a good thing!), reading mysteries, doing crossword puzzles, etc., I'm frustrated with not knowing what happened to my voice. In addition, I  have that 'oldest child-mother of three-school director' feeling of responsibility and feel as if I’ve lost control of a very important part of myself. Not understanding this condition has led me on a quest.  In this blog, I will share my experiences thus far, in the hopes that it might help another. Plus, this blog is an attempt to reach out to others, to those beyond my own acquaintance, who might have some answers. I’ve been on a journey and have had experiences with both traditional and alternative medicine in trying to solve this mystery.  I'm still searching.

I know that there must be someone out there, in the realm of social networking, who has had a  similar experience.  I’d love to hear of someone who has overcome a voice disorder, and can share methods and recommend medical contacts. I’ve been diagnosed, as a doctor at UCLA ENT dept. said, with “classic Spasmodic Dysphonia” and was told that there’s no cure, perhaps a short-term fix. I’m not ready to accept that, so I’m still searching for answers. 

My daughter, who writes online both professionally and recreationally suggested this blog. After much thought, for I haven’t even joined Facebook, I decided that the blog might be reciprocally beneficial. Maybe my journey can help another person, and hopefully I’ll learn from someone else about their experience with this condition. If you, the reader, know of anyone who might have experience in this area, either as a patient or practitioner, please pass this on. I’m looking forward to hearing from you.