Wednesday, January 3, 2007

Hmm! Are you sure? I’ve heard this before!

After approximately four years of hearing several general practitioners reassure me, I did not feel comfortable with the consistent diagnosis. Evidently the strained, strangled like sound of my voice was nothing more than a stress related, nervous disorder. The consensus of medical opinion was this voice problem would most probably continue for as long as I remained in highly stressful employment positions.

Okay. Stress management routines and relaxation techniques became focal points of daily life. Strangely, with improvements in workplace environment coupled with well planned down time at home, including a regular exercise program and fulfilling interests in craft work, voice quality just did not improve. Hmm! Was something sinister developing here?

Next annual breast screen appointment provided an answer! Diagnosis of breast cancer confirmed following a mammogram. Well. Could the funny voice be somehow associated with cancer? After all, being one of four siblings all now diagnosed with cancer is not a good record for any family. The surgeon, interested in the funny voice thing, needed to know if there were any obstructions prior to mastectomy surgery scheduled for three days time.

Video fluoroscopy, better known as barium swallow x-ray, confirmed no indication of obstruction but also confirmed mild dysphagia. There certainly was a history of fluids sometimes ‘going down the wrong way’! Following successful surgical intervention and on-going treatment for some years, the old funny voice thing just kept on sounding stranger and somewhat intensified. Then, referral to an ear nose and throat (ENT) specialist.

Wonderful news! Sinus drip causing voice change. Nasal drops would have it fixed up in a jiffy. Yeh? NO WAY. About six years had passed at this point. Time for another ENT opinion.

Well. How fortunate was that. The guy was really with it. Been there, seen this before. No worries. Daily gargles with a pine fragranced concoction combined with brief speech therapy intervention would have the problem sorted within two weeks. My God. Easy. How come no-one else had thought of that? Guess what?

Depression, depression, depression said the next general practitioner, some years after the gargling genius’s expert opinion! Following another year of feeling zonked out and drugged to the eyeballs, prescription and pills hit the rubbish bin. Now going on for 13 years or so of making rasping, gasping and croaking, sounds when trying to get words out! Then tragedy really struck!

My husband, my lover, my friend. Diagnosed with end stage renal disease and end stage cardiac disease. Three years of intense treatment and all that goes with it. One of the last medical appointments my husband had was with a neurologist. That appointment seemed to focus more on my voice than my husband’s medical needs of that time.

“Yes, yes. I’ll come and see you one day. Just don’t have time now.” Then my husband died. We spent the last 9 hours of his life in the Intensive Care Unit (ICU) of a hospital. I had been in the UK for three weeks of respite following three years of full time caring for my husband. The day I returned he had been admitted to the ICU. We talked and talked about so many things, including the doctor’s comment about my voice. Eventually, my husband asked me to step outside for a while giving time for a brief rest. With a firm embrace and exchange of the “I love you so much” and “me too” kind of words, I stepped outside. Within minutes I was recalled. My husband had fallen back against the pillows and could not be resuscitated. It was three weeks past our 43rd wedding anniversary. I was shattered. In particular, I thought about his concern that I follow up with the neurologist about the funny voice when he was so very ill himself.

Within a few months of my husband’s death I followed up the neurology visit. I wasn’t very enthusiastic about the appointment. Heard it all before – or so I thought! A NAME! HE ACTUALLY CALLED IT BY NAME! Spasmodic dysphonia. What the heck is that? He said something about differences from the norm. Second opinion required by a specialist in Brisbane, several thousand kilometers away. No worries. ON MY WAY!

Following intense diagnostic procedures over a period of approximately three weeks, the diagnosis was confirmed. Atypical adductor type spasmodic dysphonia with some additional indicators of cervical dystonia to be monitored over time.

TREATMENT. Oh, what heavenly sent joy! Following the first treatment I just about skipped back to the motel and telephoned all my family. Not supposed to use voice too much that day but what the heck! EVERYONE UNDERSTOOD WHAT I SAID! With tears running down my cheeks I found myself saying from deeply within my heart and soul, “thank you God for your blessings received by me this day. Thank you, thank you, and thank you.”

Then and there began a most wonderful journey of healing, hope, purpose and joy. Gone was the intense feeling of frustration. Gone the embarrassment every time I tried to speak. Gone the sense of shame resulting from thoughts it was all in my mind! Gone the thoughts that I did not want to be in this life anymore!

Ongoing treatment has led to little trip-ups along the way. I will share some of those experiences with you as time goes by. Meanwhile, I have wonderful memories of times spent with my husband and our five wonderful children who now have most beautiful families of their own. Recently retired Federal Opposition Leader, Kim Beazley, said it how it is. Family is everything. How wonderful it is to have voice to speak with them. Please, do leave a comment. Together let us explore questions, doubts, joys, and rejoice in identifying solutions. Let us BE voice for times when we have no sound of voice. Sue Bayliss


Megan Bayliss said...

This is an excellent article. I wonder how many more people are out there coping with misdiagnosis or pursuing treatments that further rob them of their voice?

Sue Bayliss said...

Megan. Thank you for your thought pondering comment. Unfortunately, histories of misdiagnosis and inappropriate treatments seem to have been frequently experienced by people with dystonia of any form.

Maria said...

Dear Sue,
I'm so sorry about the death of your husband. I hope this new year brings you comfort and reassurance that he will be with you always.

I, too, have spasmodic dysphonia. It's been three weeks since my first botox injection. My husband travelled with me from Boise, Idaho, where we live, to Seattle which was the closest place for me to receive the procedure. For years, I've just been coping with the whole "shaky voice" thing, telling students I teach that it's just the way I talk, that I'm not crying. Whenever I needed to make an important phone call, or one that I was stressed about, I'd have a glass of wine first, which usually helped.

But after at least 10 years with SD, I decided to try the Botox. Psychologically, I was less inclined to try new things because of the burden of having to deal with the look of alarm or concern on someone's face when I'd first begin to speak. I hated using the phone. My experience with the doctors at the University of Washington was very positive. They explained each step of the procedure, which included having small wires inserted in my throat to identify where the tremor was strongest. I also have essential tremor, a condition which causes me to have shaky hands, and the doctors weren't sure if this was also affecting my voice quality (my entire throat, not just the folds of the larynx, moves when I talk). Botox was injected on both sides of my neck.

Now, I'm not yet back to my normal vocal range. I can't project my voice, and have a higher "minnie mouse" tone, which has improved slightly in the last week. I'm keeping a weekly voice log, to get some idea if there's been an improvement. Initially, I was distressed at my inability to cough productively (I almost panicked at one point when I couldn't clear my throat), but happily, this has gotten better, and I can swallow liquids without choking too.

One of the ways I used to cope with SD in the classroom was to project loudly, which sometimes helped the shakiness. Now I'm worried because I may not be able to be heard in a class full of noisy children. I'm a substitute teacher, so I haven't begun back since the holidays, and I wonder how I'll manage.

Anyway, I'm grateful to be able to share my story with you. I assume Megan is your daughter, and she's the one who got you started with this. Good job, Megan! I think sharing our stories may help others with various forms of dystonia. Please keep in touch!

Sue Bayliss said...

Maria. Thank you so very much.

I deeply appreciate your words of comfort re the death of my husband. I miss him terribly.

I read, reread and then read your words again! My oh my! How I know exactly what you describe. One teacher I heard about during one of my visits to Brisbane for treatment evidently used sign language with her class. Children soon picked it up! You may need a voice amplifier. My high voice sometimes lasts about 3 weeks. Good speech therapy helps me lower that high sound. Softness of voice is a real problem but is better than having the spasms and the shakes (me too, hands and head). My email address is - I would like to keep in touch with you.

Megan is my second daughter, I just love her blogs (& G'son Home School too. Doesn't want his name used. Chose to be called Boy. Works well) Then 3 sons. Darren, youngest son is my carer and does a very good job.

Will try to do a blog a day. Am organising a local support group here in Cairns for people with SD and/or any other form of dystonia. Will write an article as we get it up and going - SOON.

Hope all goes well for your return to teaching. We will be thinking of you. Sue B.

Megan Bayliss said...

thanks for responding to Mum's article.
I hope that all sufferers of SD can have a loud voice by sharing information and chatting together without having to experience the pain and distress of using speech.