Some more news

The search for information about this substance called VOXTM is not over by a long shot.

Thanks to a range of really lovely people including my speech pathologist and people on a number of discussion boards I have managed to obtain some additional information and of course this is leading to a lot more questions.

In a document entitled ""Horizon Scanning Report Injectable Silicone Biomaterial Implants" December 2005 from the Department of Health and Ageing there are the following comments:

"Treatment with silicone-based products for this series of indications is at various stages of development in Australia. Uroplasty Ltd. (http://www.uroplasty.com) currently produces a range of silicone products specifically for the treatment of these indications, including Macroplastique®, Bioplastique® (or PTP®), PTQ® and VOX™ implants.

Each of these products consists of textured polydimethylsiloxane (PDMS) particles suspended in a bioexcretable carrier hydrogel of polyvinylpyrrolidone (PVP) (Malouf et al. 2001). Both Bioplastique® and Macroplastique® are listed in Australia by the Therapeutic Goods Administration (http://www.tga.gov.au/)" . . .

"In Australia, Macroplastique® and Bioplastique® implants (including PTQ® and VOX™) are both listed by the Therapeutic Goods Administration (TGA) as `tissue reconstructive materials' under the Australian Register of Therapeutic Goods (ARTG) numbers 53283 and 69960, respectively (TGA 2005)."

and

"Endoscopic vocal fold augmentation was first advanced in 1911 by otolaryngologist Brünings, who attempted to treat vocal fold paralysis with paraffin oil injections (Sittel et al. 2000).

The use of PDMS injections in laryngology was first documented in the literature in 1993. Long-term results on the use of Bioplastique® in vocal fold augmentation were not reported until recently, following the publication of two case series in Germany and the U.K. (Sittel et al. 2000; Alves et al. 2002).

No Australian studies have been published as yet. Bioplastique® injections appear to be at an experimental stage overseas, and may remain so while the optimum materials for vocal fold augmentation are still in question.

There is some thought among the medical community that the vibratory qualities of silicone implants may make it a more useful substance than hard plastics (such as those used in medialisation thyroplasty), although there is no clinical evidence to support this (G Rees, personal communication, 2005).

While the procedure has potential for wide diffusion in Australia (given its minimally invasive nature and its rapid recovery outcomes compared to conservative treatment)

[Note: my emphasis]

PDMS is not presently considered an ideal material in the treatment of UVFP, due to both the small risk of granuloma formation and implant migration, and the general lack of high quality evidence of its safety and effectiveness in treating this indication (Rees, personal communication, 2005)."

With this information to hand the questions that now need to be asked are:

1. what if any processes are in place in the ACT to assess the extent of the problem;
2. what if any processes or tests exist to determine the most appropriate treatment options; and
3. what if processes exist to provide a potential consumer (like me in this instance) with sufficient information to enable some really informed consent in selecting a treatment modality?

Frankly, I am at the stage of my life where I REALLY REALLY want to listen to a couple of experts who tell me what is good for me but being the horrible sceptic that I am I would also like to have some insight into how they arrive at their conclusions and recommendations especially when the 'official' advice is at it is above.

The advice seems to indicate that us of this substance is still relatively experimental and while it has been really successful on terminally ill patients - none of them have been around long enough to assess a longer term impact.

In my case I obviously do NOT want to be experimented on, but on the other hand what are my real prospects for surviving this illness?

If I only have a relatively brief time left - who cares? If on the other hand I have the possibility of hanging around for a few more years, then do I really want to take the risk of an experimental process that I may regret in a few years time, especially as there are at least four or five other options for treatment out there some of which are NOT experimental and which are actually reversible?

More inquiries are under way with both the company that sells this stuff in Australia and of course with my contacts elsewhere.

Keep watching this space - more news as I have it.