Chat: Professor Peter Silburn

Flutters asks: What exactly is Tourettes? Is it inherited or just one of those things that crops up for no apparent reason? Is it able to be cured by other less radical means?

Peter Silburn: Tourettes is a neurological disorder and it's characterised by vocalisations and ticks. Some people have behavioural problems with it and these are also involuntary and they can be quite wide spread, but usually the sever forms are not as prevalent as common forms such as little ticks, and fits of words. There is an inherited component, but the cause is still being worked out. There is a great website which you can find which is the Tourettes Syndrome Association of Australia (http://www.tourette.org.au/). It's more common in males than females, and it starts around the age of 2 to 14 years.

roy asks: How much does the surgery cost, and is it covered by health insurance?

Peter Silburn: The surgery can be quite expensive and it depends on whether you can have it, and so the cost depends on your institution. In Australia surgery can occur in Brisbane or Sydney and other places, such as in Melbourne and Western Australia. This is the first surgery of this type in our country for Tourettes and the costing is going to be worked out in the near future.

Mr_knowledge asks: What are the risks of this surgery?

Peter Silburn: The risks of this surgery are significant, in the first instance it may not work. But in terms of harming someone, people can have a stoke, or there can be bleeding, or the leads can be put in the wrong place. And this can be irreversible, however the actual device can be turned on and off and usually brain tissue is not disturbed, so if it is not right in the first time round it can be moved. Must be stressed, this surgery is very new and is only used in severe cases of Tourettes syndrome.

J asks: Does this technology only have application in correcting chemical imbalances such as the ones that cause Tourettes, or could it potentially be used (as an example) for retraining the brain in the event of a stroke to regain control of muscular function? Or have I completely misunderstood it?

Peter Silburn: This technology does affect chemical messages in the brain, we also think it can effect how genes are turned on and off in other parts of the brain and perhaps how many cells can be made in the brain, although the latter is very experimental. The application of this technology is usually in movement problems such as Parkinson's Disease, Dystonia, GIAT disorders, Tourettes, Obsessive Compulsive Disorder, Depression and Epilepsy. Many of these conditions are due to a chemical imbalance, but the brain functions on electrical activity and chemicals and the two interact. There have been no direct studies on its effect and stoke.

james asks: I understand the involuntary movements and the tics, but not the swear words. Please explain why this happens.

Peter Silburn: In the brain in Tourettes we think that there is a lack of suppression. The movement effects and this has been known for sometime, but because the surgery is very new for Tourettes we are still learning about how it affects things like Copralra or the swearing. We are move pleased that this is also decreased substantionally in Bianca's case. So overall we think we are enabling the brain to control itself. These structures are modular and are not just structures involved in movement, but also have connections throughout the brain that involve mood and emotion. And we have learnt from Parkinson’s Disease that this structure can also be involved in language.

knight asks: Is the improvement progressive, will Bianca continue to improve in the coming months?

Peter Silburn: That's a good question and when you look at other patients that have been operated on that get a good 90% improvement in the first week you can expect from those studies for improvement to continue to 4-6 weeks and slight improve there after. Given that she is the first in Australia we will be watching her closely, not just her motor tics and vocalisations but also her other outbursts.

Eliza asks: Hello Professor Silburn, I’m 17 and have Tourettes. How many of these operations have you done?

Peter Silburn: This is the first operation on Tourettes in Australia but we have done over 300 operations of this type. And particular involved with the target site like with Bianca, so in effect we are applying a lot of knowledge and experience in the target fight for Bianca based on our over 300 operations in the past.

Maiden asks: How come doctors haven’t offered her this surgery before? Why did she have to wait to see a similar story on 60 mins and follow this up herself?

Peter Silburn: This therapy of deep brain stimulation is the first case in Australia, whilst we have done many operations including the same target fight in the past, this is the first time it has been applied to Tourettes in this country. There have not been many patients who have undergo this overseas. As there are not many doctors performing Deep Brain simulation, it is just a matter of making people aware that this is now a viable option for treatment for Tourettes. So overall it is just a matter of time, since we have done this and 60 minutes have gone along with Bianca's wishes, we hope the wider community will be aware this is an option for people with Tourettes.

roy asks: How old does the child have to be to have the surgery?

Peter Silburn: Normally we like to wait for someone to be at least 12 and that is based on operation for other conditions. It is very new for Tourettes and so there is still an accumulative experience worldwide. Also it is well known that the motor tics and some of the vocalisation can ease as time goes on so the decision to operate in teenagers is based on observation that the tics and vocalisations and accompaniments, such as aggression and OCD are getting out of hand despite all the medical help at hand.

teejay asks: i would like to know if these ticks happen during their sleep?

Peter Silburn: These tics do not happen during sleep, but there are some motor tics disorders that do happen during sleep, but in general in Tourettes they settle with sleep. There are many types of tic movements and tic disorders and these are best discussed with a medical doctor.

Wendo asks: Has Bianca gone home yet? If not when do you think she will be able to? Do you think that she will be able to live a reasonable normal life from now on?

Peter Silburn: Bianca has been operated on approx one week ago when the filming was done. She has been in an institution for 18 months and we are pleased to say she has gone home with her parents over the weekend and we will be seeing her tomorrow to see how things are. At this stage we are quietly confident that she will be able to return home to her family, given her condition has 90% deduction and can continue to improve over the next 6 weeks and longer. So at this stage she is on track to go home with her family.

Jades asks: Is the positioning of the electrode different for each Parkinson’s patient and was it also in a different location to treat the Tourettes?

Peter Silburn: In Parkinson's patient we often place the electrode in a different area in the brain. Sometimes we place it in the same area, as in Bianca's case so we were familiar with the area. The electrode that was placed there is a little 1mm metal electrode that delivers a continual impulse, we chose for Bianca the Golbus Pallidm Internus.

lizzie asks: I am interested in the long term affect of the operation I saw tonight, and will the improvement stay long term, what is the outcome down the track?

Peter Silburn: As in the last couple of other questions, this is very new surgery but based on the overseas observations, if you are have good response after the first week you can expect significant improve up to 4-6 weeks. And the effects (if the electrodes are in the first place) are long lasting.

Jonathan asks: Professor Peter Silburn I just wanted to say you are incredible! Just one question though, why do you expect the symptoms to lessen over time? Are the neurons somehow still adapting/reacting to the new stimulus?

Peter Silburn: Thank you for your comment. Yes we believe that the brain continues to settle down over time by influencing areas that are distance to where we put the electrode. So whilst we are not definitely sure, we suspect that the remainder of the brain will behave more normally as time goes on. Such that the neurons can talk to each other in a more harmonious fashion.

Hayles asks: Dr Silburn, where was the procedure performed, at which hospital?

Peter Silburn: We performed this operation in St Andrews War Memorial in Brisbane. This is the first location in Australia, however other groups have the capability to do this operation, such as in Sydney, Melbourne and Perth. If you wish we can prove the names of those doctors.

Mike41 asks: The program tonight was quite emotional. Your contribution to her remarkable improvement is inspirational. What length of time have you been studying and researching Tourettes? Is this surgery being further developed overseas?

Peter Silburn: Neurologist for many years have known about Tourettes since 19 century by discovered by Gelle de la Tourette. We have had experience with cases for many years and have had a significant amount of experience with Deep Brain stimulator surgery for over 15 years. It is only recently that this type of surgery for Tourettes has emerged, although the first surgery was performed almost 10 years ago. On reviewing the literature we were confidant it was a viable procedure to perform for Bianca and consequently went along with the surgery, and during the procedure we collected information to further improve the surgery. Research for Tourettes is not as strong as other disorders and an useful website can be found at the Tourette Syndrome Association of Australia.

mrb24 asks: What controversy exists in the medical field regarding deep brain stimulation as a treatment for Tourettes syndrome? I noticed you mentioned in your interview, emotionally that in regards to the procedure in this case "I think we should do it". What does current evidence indicate about this treatment in your opinion?

Peter Silburn: I thought that with the first case in Australia we had to be very careful that approving Doctors had tried all avenues, that we were comfortable with our own experience with operation in the site (which we have done many times), but really it is only an emerging therapy worldwide and so you are really looking at people's cases. In that setting it's really only attempted when all other treatment options have failed and patience are getting worse and becoming a risk to themselves and possibility those around them (the latter being rare). In Bianca's case, she has exhausted all other options and thought we should do the operation for her.

bc asks: My father had the operation for his Parkinson's disease 2 weeks ago - but the operation is in two stages - 60 minutes show it as one stage op - is this correct? My dad has yet to have the wires threaded into his chest and connected?

Peter Silburn: For Parkinson's disease, it is possible to do the whole procedure in one step, placing leads and connecting generators. We do it in one stage, it depends if you are confident if the electrons are in the right position before you hook them up to the impulse generators and also some teams prefer to let the brain settle down before placing the generator. So there is no special reason, but the main thing is that the electrodes are in the correct position, that's the most delicate part of the procedure.

Neuro asks: What kind of maintenance does the transmitter implanted in the brain require?

Peter Silburn: Surprisingly very little maintenance, the electrodes in the brain last life long, the impulse generator that is providing the electrical impulses requires replacement every 3-8 years, depends on how high an output you require. The replacing of the impulse generator does not require surgery on the brain, it's just at the end of the lead connection, not in the brain itself. So it is a relatively simple procedure. We do check how well the system is running and whether we need to increase the output with the patient's symptom. The low maintenance for a device that is required to run as it does in the middle of someone's brain is a tribute to the scientist who developed the impulse generators and the electrodes.

TSAA asks: Can you tell me the risks involved and how severe a case would need to be to consider this surgery? Are you able to put a percentage risk facotr to this surgery and a percentage factor on its success?

Peter Silburn: Regarding the success, it's varies on the different levels of Tourettes. And it is considered when medication is no longer maintaining someone's quality of life. As this is new surgery, it is unfortunately as yet, not clear what the exact percent of risk involved, but really the risks are under 2% for seriously adverse events based on our work with Parkinson' Disease patents, where 100s of procedures are performed. In Bianca's case we have already achieved a greater than 90% deduction in her tics. Her aggressive outbursts have disappeared at this stage. Giving exact percentages is hard at this point in time.

Sim asks: Will this surgery become so routine that even people whose lives are impacted on by only mild Tourette syndrome, can have the surgery, or will it only ever be used for more extreme cases?

Peter Silburn: At this point in time, surgery is restricted to cases where the medication is not maintaining quality of life, if it is a mild form of Tourettes and does not have a profound effect, with our current understand it will be unlikely to undergo surgery, particularly if the medication can control the symptoms. Any operation on the brain carries risk and stimulating the brain does not damage the brain or tissue, and while this is attractive it can still be tricking passing the electrode into the brain. Perhaps in the future this will become less tricky.

Ashleigh asks: Is there any sites you would recommend to look at for more information on the procedure, and the science behind it? Also where to find which Doctors are qualified to perform this surgery?

Peter Silburn: The sites we have included are the Tourette Syndrome Association of Australia, the other site includes Awareness for Movement Disorders. For further information on a pubmed are occasionally useful, but you should also speak with your neurologist, as this is an emerging surgery.

Interviewer: Unfortunately we are out of time, do you have anything else you would like to share before we finish tonight?

Peter Silburn: This is an emerging surgical treatment for Tourettes Syndrome and is providing significant hope as you can see in Bianca's case, and improves their quality of life. So it is a very exciting area and it is providing real hope and therefore it is an area most rewarding to be involved in as a Doctor.

Interviewer: Once again thank you and goodnight.

This concludes our chat with Peter Silburn, Sunday September 14, 2008.