DBS Surgeries by Dr.Chew Nee Kong

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

This is a very important post. Dr. Fernandez launched a program called SUPPORT-PD this year and Dr. Rodriguez, Foote, and myself were part of the team. We worked with a 3rd world country (Philippines) for one year setting up a referral network and interdisciplinary surgical team. We then came and lectured for a week in the country, increased awareness and enthusiasm, and then helped do two DBS surgeries with devices donated.... Anyone interested in this tyoe of program should contact Dr. Hubert Fernandez (University of Florida) who has been the visionary and planner for such programs. There is as you pointed out a great need for awareness and access to care. Also we can teach lesion procedures which are cheaper and also effective._________________Michael S. Okun, M.D.S

Stimpulation 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


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