Friday, February 2, 2007

Cervical dystonia and botulinum toxin type B; what happens in the long term?

How often do we reflect upon what may happen in the future as a result of the treatment we presently receive? How much do we know about the long term effects of Botox type B treatment? Questioning our decisions and thinking about possible outcomes in relation to our choices are natural thought processes. Mostly, we have little resistance to challenging thoughts creeping into our mind during those quiet, reflective moments in time. These thoughts are sometimes intuitive, defensive, confusing.

All the above mentioned thought processes lead us toward making informed decisions about health, relationships, quality of life. Together with these cognitive functions we apply trust, enabling us to be absorbed by that welcoming aura intertwining hope and faith. We feel safe, surrounded by reassurance.

Are we prepared to expose our vulnerability by asking our treating specialist’s opinion on something we have read or heard? My personal experience is the more questions I can think of asking during treatment appointments, the more I learn from the answers I receive.

Someone brought to my notice a very interesting brief communication about an article thus leading me off on a train of thought resulting in a list of questions to ask when I go for treatment next week in Brisbane. To that person, I say thank you. Please, follow the link in this paragraph; think for yourself about what the outcome of research does for us. How we are part of the answers to questions being asked in searching for a cure for the different kinds of dystonia. As individuals, we are not alone. We are members of a global team moving forward together, supporting each other along a road of discovery, a future of hope and promise, for ourselves and those who come after us.

Please, leave a comment if you are comfortable doing so. I will get back to you. Wherever you are, have a great day.

Sue Bayliss. Cairns, Australia.


Yvonne said...

Hi Sue
Glad you are curious about that study - I would love to hear your feedback when you next see your specialist.
I had so much to ask mine after a long absence that I forgot to mention it.
I for myself wonder if I am better to cancel appointments that are due if I am feeling reasonable and wait longer as that would surely delay antibody buildup in the long term.
I asked about genetic testing for myself and my aunt but the response was that as it was unlikely to be early onset generalized dystonia the result would be negative and as yet no other genes recognized for focal dystonias.
One thing is for sure I can see the benefit of having testing to check for anitbodies and I dont think that it is offered as a matter of course. I also mentioned that I have regular spasming in my trunk muscles and could it be connected.
The reply was that unless he examined me he couldnt be sure but he didnt think so. ?????? End of subject.??????
Sorry about the link I last posted I have yet to work out how to post a link in a comment.

Sue Bayliss said...

Hello Yvonne, thank you for your comment.

Written list of what I need to discuss with treating neurologist in Brisbane. Will go through list, crossing off as finish each question. Also wondering whether appropriate management model for treatment may be to go long as possible before returning for treatment. I know one person who has been aiming for six months between treatments for spasmodic dysphonia, recently reaching that goal. So far, have not been able to go longer than 5 months at most.

Will also ask about testing for antibodies. Because that was done in an empirical study under controlled conditions, I suspect serology testing is not done as a matter of course.

Your query re regular spasming of other muscles needs following through. In addition to retrocollis cervical dystonia, I have muscular spasming right down my back. Is painful, limits movement and activity. Is also high priority on list of questions on Monday at Royal Brisbane and Women’s Hospital Botox Clinic.

Have not placed a link in ‘comments’ but try working with two Internet sites open. Bring up the article you want on second Internet page then highlight the address bar at the top and ‘copy’ the entry. Go to original Internet page to the ‘comment’ box, ‘paste’ your ‘copy’ there. Will also try that at close of this comment.

My son Darren and I fly out of Cairns tomorrow, 10am. Arriving Brisbane 12pm. Another son and daughter-in-law meeting us there. Leave Brisbane on 6am flight to Cairns, Tuesday. Staying at motel right in Brisbane City Mall so will be experiencing ‘the big smoke’ for that little while.

Our big storm the other night has done lots damage. No wonder our windows shook/rattled in window frames! Several lightening bolts struck houses/pathways only streets from us. Residents there thought a bomb had exploded. There was little crater left in someone’s driveway. Feeling bad now about rousing on poor old Gwyllum and Neumann. They are both 11 years old and quite dottery! With all the rain we will just have to be more tolerant towards them – they have always been such faithful and loving pets.

Have included site address for that study but don't know whether it will link when I 'publish' this comment.


Sue Bayliss said...

Didn't work Yvonne. Sorry.