Thursday, January 18, 2007

BOTOX treatment for dystonia: do I want to continue?

Dystonia patients sometimes wonder whether or not to continue with Botox injection treatment to relieve overactive muscles. Information in Australia about this neurological disorder is available on www.dystoniaaustralia.org.au where you will find information on the various types of dystonia. For specific information on cervical dystonia, more commonly referred to as spasmodic torticollis, you can access the site www.asta.asn.au/WhatIsSpasmodicTort in Australia whilst in the United States of America a valuable site for spasmodic dysphonia, known also as laryngeal dystonia or spastic dysphonia, is www.dysphonia.org and navigate the user friendly site for a wealth of information.

The use of botulinum toxin (Botox) injections directly into the affected muscles is recognized globally as the most effective form of treatment for dystonia at this time. Many people experience some minor complications from this treatment such as very soft voice almost inaudible to other people following injections into vocal cord muscle. Additionally, some people experience difficulty with dysphagia, difficulty swallowing fluids without spluttering and coughing as the fluid tends to go the wrong way! There can be other forms of mild complications with treatment for any of the dystonias. It is these reactions that sometimes leave the person wondering whether or not it is worth persevering with treatment. One form of self help in ascertaining the facilitating forces and also the opposing forces for informed decision making is to conduct a Force Field Analysis.

Force Field Analysis can identify alternatives for choice and create new ones. Basically, it is a table of two columns with a heading across the top stating the problem situation and beneath that, the goal you are aiming for. For instance, you may write something like, PROBLEM SITUATION: Botox treatment causing additional symptoms. Beneath that line, you may write something like, GOAL: Attaining most comfortable level of symptoms for coping with daily life. In deciding how to formulate your ‘PROBLEM SITUATION’ and ‘GOAL’ statements, you may need to consider your specific reasons (speech, pain, posture etc) and what it is you are aiming to achieve.

Whilst forces pushing a person towards their alternative goal are displayed beneath a ‘+’ sign (Attaining most comfortable level of symptoms for coping with daily life), opposing forces are displayed beneath a ‘-‘ sign. For instance, your experience may be significant relief from spasming of vocal cords lasting 5 months post treatment. You would put this beneath the ‘+’ sign. Alternatively, you may consider your voice to be soft and breathy sounding for a much longer time than you anticipated following treatment, thus being disadvantaged more than you were prior to having had treatment. This experience may be detrimental to you in your workplace or may simply not benefit you enough to justify continuing treatments. You may then list this beneath the ‘-‘ sign as, unable to make myself understood due to on-going softness of voice, without improvement. Continuing on with your points to consider, you would document them beneath one or the other of the ‘+’ or ‘-‘ signs. You can then rank your forces by strength.

Ranking is simply rating each force by 1 to 3 with 1 being the strongest and 3 being the weakest. You work down towards a balance point for the forces. Following this exercise you may then decide on a strategy of strengthening your ‘+’ forces or diminishing your
‘-‘ forces. You will recognize a distinctive trend, thus assisting you to come to a decision that is the right one for you for that particular point of time in your life.

The above method is just one of many ways to assist ourselves in decision making. If you already have a way of making a decision easier, stick to what you know has worked for you in the past. If you are wondering how to best reach a decision, I hope this example has given you some ideas to work with rather than bamboozle you or overwhelm you. Don’t forget, you are always welcome to leave a comment or send an email.

Sue Bayliss. Cairns, Australia.

3 comments:

Sara said...

Sue, I had a big one in my negative column, it was "Fear of Getting Botox Injection". It kept me from getting botox for over 2 years, even after I could only whisper. When my desire to talk outweighed my fear, I finally tried the botox and I am so glad I did. There are no negatives in the botox column for me now.

Maria said...

Sue and Sara, I too was afraid of getting the injection, but mostly because I feared the disappointment I'd feel after having gone through the trouble and expense only to find it didn't work. I worried about long term effects: whether my voice quality would actually decrease. Now, 5 weeks after my first injection, I'm finding there is no strain in talking, and others have commented that my voice is smoother sounding than before. The negatives (choking on liquids, not being able to cough well) were temporary. Having to travel for the procedure turned into a wonderful "mini-vacation" for my husband and me.(Advice to others: always surround a worrisome experience with some delightful indulgence-it helps you remember what was great about the experience. Kind of like having that warm, sweet baby makes you forget the labor pains!) Would I do the botox again? Yes.

Sue Bayliss said...

Thank you so much to both Sara and Maria. I too feared my initial injection and still do not like the experience one little bit but in a less anxious way than the first time. I hate the 'try not to swallow' thing during the injecting. For me, that is so hard but in the bigger picture, what is 5 minutes or a little more in relation to the ease of speech following injection. Because I have had dysphagia for many years, I always use thickened fluids but do need to thicken them a little more following treatment. The great feeling of being able to speak without spasm is worth the extra use of thickening in fluids! My son usually comes with me when I have treatment and we stay at least overnight, sometimes longer so we can enjoy a couple of days in the 'big smoke'. The two hour flight each way makes it a long day if we don't stay over. Gets expensive but is one of the exciting things about treatment times! Great to hear from you both. Sue.