D B S Surgeries in Malaysia by Dr.NK Chew 2

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Anonymous
Posted: Sun Sep 16, 2007 1:30 am Post subject: Deep Brain Stimulation Surgeries in Malaysia

DBS was first carried out in Malaysia back in 2003, at Sunway Medical Centre, Kuala Lumpur (Dr Lee Moon Keen, Dr Chee Chee Pin, Dr Lee Foo Chiang). One year later, DBS was also started at University Malaya Medical Centre, Kuala Lumpur (Dr Vickneswaran, Dr Chew Nee Kong). So far, about a total of 20 Parkinson's patients in Malaysia have undergone DBS in these two local hospitals. Overall, the response to DBS has been encouraging. There has been significant improvement in symptoms (tremor and slowness of movement), reduction in dyskinesia and total daily dose of medications. Complication rate has been low. I saw with my own eyes how a few of my Parkinson's patients improved drastically after the DBS. Just imagine, prior to the arrival of DBS in Malaysia, I saw so many of my Parkinson's patients dying as a result of lung infection. The recent report on a successful DBS performed on another Parkinson's patient at University Sains Malaysia, Kubang Kerian, Kelantan, is really a giant leap forward in the history of Parkinson's care in Malaysia. Thus, the arrival of DBS in Malaysia is a good news to the Parkinson's community. The prevalence of PD in Malaysia is certainly not as high as that in North America and Europe, but we certainly have a sizeable Parkinson's population - estimated to be 15 000 Parkinson's patients. Of this, perhaps about 2000 patients (who are in the advanced stage of PD) would have benefited from DBS. But, it is sad that only about 20 Malaysian Parkinson's patients have been able to undergo this surgery locally. There are many reasons for this; a) lack of awareness on DBS as it is a new surgical procedure in Malaysia b) lack of funding - as DBS costs about RM80 000 for the first surgery and RM60 000 for each battery replacement, it is easily understood why most Parkinson's patients are reluctant to undergo DBS (most Parkinson's patients are retirees who have no permanent income). Furthermore, the Malaysian government has not set up any special funds for DBS. In contrast, in other countries such as United States and Europe, thousands of Parkinson's patients have successfully undergone DBS. When I was attached to the the Institute of Neurology, Queen Square, London, I saw the surgeons operating on about 2-3 Parkinson's patients per week. Therefore, there is much left to be done for the Parkinson's community in Malaysia - ignorance, misconceptions on PD, lack of neurologists / neurosurgeons and finally the financial difficulty (costs of medications and DBS are expensive). In Malaysia, there is a saying, "PD is a disease of rich people". I'd like to welcome comments from you and the colleagues from other countries (Kathrynn Holden, Dr Okun). Dr Chew Nee Kong, Neurologist, Kuala Lumpur, Malaysia.
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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Sun Sep 16, 2007 6:54 am Post subject:

Dear Dr. Kong, I am not a physician, and thus unable to contribute significantly to your very valid concerns re deep brain stimulation surgeries in Malaysia. However, might it be in part due to lack of a strong PD organization in the area? I cite the National Parkinson Foundation as an example; the NPF actively seeds support and donations in order to spread awareness of PD, education regarding special needs, and funding for research. I have noted that PD societies and associations in other countries, such as the UK, Canada, and Australia, have done similar work. If there is sufficient interest among families of those with PD, it would be worthwhile to form such an association. The NPF has materials to help start PD support groups, and from these often grow larger and more influential groups. Perhaps this might be a place to start._________________Best regards, Kathrynne Holden, MS, RD -- For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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Anonymous
Posted: Mon Sep 17, 2007 12:18 am Post subject: Deep Brain Surgery in Malaysia

Dear Dr. Kathrynne, Yes, I agree with you. It is a good idea to seek the help of a PD support group to raise funds for Parkinson's patients opting for DBS. Unfortunately, the awareness of PD in Malaysia is lacking, and thus it is still not considered an important illness. Consequently, the PD patients do not receive much support from the public. Dr Chew
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Anonymous
Posted: Mon Sep 17, 2007 3:21 am Post subject: Public awareness of Parkinson's Disease in Malaysia

In reply to your email there are problems on the public awareness of PD in Malaysia. There are reasons PD sufferers either under-diagnosis or late diagnosis of PD. 1. the lack of public awareness Public are not well aware or informed about the early PD symptoms. This illness is widely under-recognized by our society and even among the medical personnel.Many sufferers of PD regard the early symptoms of PD as a natural ageing process and not a disease. When an elderly person starts to have slowness of movement and tremor, many people will have this to say- " I know you are slowing down. 2.the lack of Movement Disorders Specialists PD sufferers have no choice but to see the general practitioners who may not familiar with the diagnosis of PD. As the result we have late or under diagnosis of PD suffereres. Besides PD suffereres themselves do not understand the onset of illness. Some notice the slowdown of physical movement without knowing the exact cause. In view of the above there are poor response and support i.e manpower, financial aid, public media for the setting up a PD organisation or caregroups . TEOKIMHOE
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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Mon Sep 17, 2007 9:04 am Post subject:

Dr. Kong, if you will click on "NPF Home" at the top of your screen, you will find the home page of the National Parkinson Foundation. From there, you can click on "Find Resources" for help starting a support group locally. You can also click "Contacting us" and send a message that will be directed to the person best able to answer. It may be that there is someone who can give you help in this regard. My very best wishes, Kathrynne_________________Best regards, Kathrynne Holden, MS, RD -- For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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Anonymous
Posted: Mon Sep 24, 2007 3:43 pm Post subject: Deep Brain stimpulation Surgeries in Malayis

Dear Kathrynne Thank you for your advise. The truth is that managing Parkinson's Disease in Malaysia is really challenging. Many people do not know much about this illness, and also its impact on the life of patients. That is why it is so difficult to get funding for brain surgery. Three years ago, I arranged for a newspaper interview for a Parkinson's patient who was going for brain surgery (Deep Brain Stimulation, DBS) at my hospital. One year after the appeal for public donation was published in a local newspaper, only about RM15 000 was collected (she needed RM80 000 for the DBS). So you can see that PD is not regarded as an important illness in Malaysia. Dr Chew Nee Kong, Kuala Lumpur, Malaysia.
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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Tue Sep 25, 2007 8:59 am Post subject:

Dear Dr. Kong, Yes, it does appear that there is less understanding of PD in Malaysia than in the western countries; although, to us it seems that there is sadly little awareness here. I do encourage you to continue contact with NPF, as they may be able to direct you to ways to form local support groups. This is an excellent way to begin the process of increasing education, understanding, and awareness of PD, and this can lead to donations, grants, and other types of funding. You can go to the NPF home page and click on "Contact Us" to send your requests by email._________________Best regards, Kathrynne Holden, MS, RD -- For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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