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[back] My DBS surgery experience Chee Liew Seong - 5 December 2005

I had my DBS surgery on 18th July 2005 - a date to be remembered. It is stated in a special ID issued by Medtronic that I have had an Implant of a stimulator (details given: model and serial numbers of hardware, date of surgery and neurosurgeon’s name and contact number.) The ID will be carried by me at all times.

Besides members of my own family, only a few people were informed of the date and place of my DBS surgery. However, I knew the news would spread fast and attract much attention - and speculation!

People would start asking, “Why in Sunway Medical Centre and not in UMMC?” and “Don’t you have confidence in the UMMC team to perform the brain surgery and implant?” and “Why spend RM 150,000.00 when you can get it done with RM 85,000.00 in UMMC? You may even get it done FOC since you are a Government pensioner?”

And the like …

The following is my explanation. It is private and personal, and the decision had nothing to do with my confidence in UMMC team in which Dr. Chew is a key member. In fact I consulted Dr. Chew for his opinion before I made the appointment with Dr. M.K. Lee at Sunway M.C. for Pre- DBS Surgery Assessment. Prior to this, on 27th June I reported to the Neuro Ward in UMMC for Pre-DBS Surgery Assessment. But I was told to go home as the date has been postponed. We had a family meeting then, to consider the option of having my DBS surgery done in Sunway Medical Centre.

I sent an email to Dr. Chew and informed him that my family suggested and insisted to have my DBS surgery done in Sunway MC as soon as possible because my physical condition had been deteriorating fast over the past few months. I had lost more than 10 kg since the beginning of this year. I had become very thin and weak. Side effects due to heavy medication had made life unbearable and miserable. They were very worried about my health. They wanted the surgery to be done earlier and are prepared to bear the extra costs for the surgery in Sunway MC.  Dr. Chew replied by phone. He said, “Well, if you can afford to have it done in Sunway, Why not?” I explained to him about my family members’ suggestion that instead of waiting and waiting (which my children found it troublesome to take leave from their bosses at short notices), I should consider having it done in Sunway right away.” “After all another patient could be given a chance to get the surgery done in UMMC. I told Dr. Chew, “Please do not think that I do not have confidence in you or Prof. Vicky. It is the long queue in UMMC’s waiting list, and the uncertainty of the date …” He said, “It’s OK with me and I will tell Prof. Vicky about this. You can have the surgery done much earlier, even at your chosen date!”  He added, “Dr. M.K. Lee is the best Neurologist in the country. I am sure her team can do a good job; and they are also more experienced than the team in UMMC.”  So with his blessing and understanding, I made an appointment to have Pre-DBS Assessment with Dr. M.K. Lee and Dr. Lee Foo Chiang, the Consultant Neurosurgeon.

A week later, I went for Pre-assessment. Soon after, I was informed of the date of admission which was Saturday, 16th July, and blood sample was taken for further tests. The weekend and Sunday were to prepare myself for the surgery on Monday 18th July.

During that period, I met other important members of the team: Dr. C.P. Chee, the other neurosurgeon, and Dr. Singh, the anesthetist. Both of them came to my room and introduced themselves. They examined my condition and told me more about the procedure.  To prepare for surgery on Monday morning, I was told not to take any anti-Parkinson medication after 7.00am.  I had to also shampoo my hair and properly wash it the night before.

It was early morning on 18th July.  At 6.45 am. I was transferred to a bed heading to the preparation room. The team was already waiting and soon started the preparation for the stereotactic frame to be screwed onto my head. I had local anesthetic injections. The pain was bearable and lasted for a short while. Dr. F.C. Lee, the neurosurgeon informed me clearly before each step was carried out.  After a session of CT scan with the frame on, they started to shave my hair and drill holes in my skull……the rest of the details I couldn’t remember. My wife told me that I was pushed into the OT at 9.00 am. I couldn’t recall what actually happened inside. But at one time I heard  a series of decimal numbers being read out by a member of the team and repeated by another member e.g. 0.4, 0.3 etc. before and after adjusting the positioning of the electrodes, I thought so. There was a lot of noise made by metal knocking against one another when the team adjusted and readjusted the positioning of the electrodes. But it was just a tiny piece of metal, I couldn’t figure out why the knocking noise was so loud. Was it because the knocking was near my ear, or was it close to the zone of the brain which controls the sense of hearing?      

I couldn’t remember also the part where the Neurologist tested my movement by asking me to move my body to confirm the correct positioning of the electrodes. I was told after that the team was working extra hard and they were very happy with the implant – “So far the most precise positioning” commented Dr. M.K. Lee. When I was awake, I asked about the time. It was about 4.00 pm. They had only placed the electrode in one side of the brain at the place called STN .  I heard Dr. F.C. Lee asked the team “Shall we continue or do it another day?” The same question was also directed to me.  I replied, “Continue.” The team agreed. They carried on to position another electrode on the other side of the brain. This time, I think, the neurosurgeon was Dr. C.P. Chee – we have the same surname, speak the same Meixian Hakka dialect, and our grand-fathers hailed from Meixian in Eastern Guangtong Provience in China. We were probably distant relatives –descendents of the same parents several hundred years or many generations ago!  We found out this when he visited me on Sunday before the surgery. After the surgery he came to my room to examine me. He was happy with the healing procedure of the various surgical wounds. I expressed my appreciation to the hard working neurosurgeons and their team, and jokingly commented, “ I heard  knocking of metal during the positioning of the electrodes – you people worked like “black-smith!”

He laughed and said “Oh, you heard! The work can be very monotonous and tiring. That is why some of us got to unwind or relax by playing Mahjong after work.” He had good sense of humour indeed!

It was already night time when I was awakened after the final part of the surgery- implanting the stimulator (pacemaker-like device). I was then pushed into the ICU. Besides my immediate family members, several people visited me the very night itself. They were Dr. Chew, Sara, Mr. Koh, Kelvin from Madtronic and some others. Dr. Chew said Dr. M.K. Lee had told him that the surgery was well done – one of their best so far.

I spent the night and the following day at the ICU until evening when I was sent to rest under close supervision in Room 411 (First class, single occupancy). I spent the next 11 days (from 19th until 30th July) in that room. Altogether, I was in hospital for two weeks. I was only allowed to go home after the stitches were removed by the neurosurgeon. During this period, my wife kept me company at the hospital (Paid RM20 per night for an extra bed,) and my children came to see me everyday after work. Many friends and relatives also visited me at different times. My appetite was good. The hospital food was tasty and I finished eating every meal that was served. In addition, I took a lot of fresh fruits from the gift baskets presented by friends and relatives. I had a lovely bouquet from the Committee members of MPDA.

During the first few nights, I was still under the influence of anesthetic. I seemed to have sleep-walked and hurt myself falling. In fact I was a bit confused.  My wife said I spoke nonsense and I must be dreaming. The doctors said it was quite common for patients who were under the influence of GA which lasted for weeks, to feel confused between imagination and reality. This would disappear later. To prevent me from falling, my wife requested the nurses to tie me up during the night (actually only a bed sheet was used to tie across the hospital bed, and I had to call the nurse on duty to untie whenever I wish to get up).

The doctors, especially Consultant Neurologist Dr. M.K. Lee, and Consultant Neurosurgeon Dr. F.C. Lee monitored my progress closely. They dropped in to see me everyday in their rounds. They were satisfied and happy with my recovery. They would give me a few words of encouragement and very positive remarks, and good advice too, when I had any problems.

After being discharged from Sunway MC, I had a fall one morning at home. I was rushed to the hospital as I had some bleeding in my nose. Both the Neurosurgeon were not available that evening. Dr. C.P. Chee was informed by the doctors in the Emergency Ward and he advised (over the phone) to have a CT scan of my head done and admit me for observation.  I spent the night in the ward under close observation. The following morning, Dr. C.P. Chee came and examined me. He said my CT scan was clear and showed neither sign of internal bleeding nor damage done to the implanted device. He then allowed me to be discharged after spending one extra night in the ward.  The fall was due to a sudden fainting spell (black out) when I got up from the bed and walked downstairs. It could be due to low blood pressure. My carelessness and stubborn attitude resulted in a long lecture from Dr. M.K. Lee after listening to my wife’s complaint. “It would be a waste of your hard-earned money and all our efforts. With the big amount spent you could have bought a brand new Honda Accord.  Do you want to smash your new car? The doctors could do that much, and the patients must listen and follow instructions. They must be accompanied and not to get up and walk alone while feeling drowsy. You could easily fall and damaged the implanted device… Be wiser and don’t be too adventurous, you must listen to your caregiver for your own good. If anything goes wrong, your doctors will be most disappointed. After all, they had been so careful and working so hard on your case, the electrodes implanted were the most precisely done by us …”

Well, I deserved to be taught a good lesson. I simply couldn’t control myself from dreaming and attempting to get free from the confine of the four walls. Surprisingly, my mobility was almost normal and seemed to have much strength and energy the first few weeks immediately after the surgery. It was probably due to after-effect of the stimulation that was applied during surgery, just like pallidotomy which enables the patient to run immediately after the lesioning. It is known as micro-lesioning effect which is short- term. Those symptoms of PD will reappear, some even worst than before surgery because the stimulator is turned on at low voltage or lower dose of medication was taken by the patient. In my case, the old symptoms of PD came back about four weeks. Dr. M.K.Lee explained, “This is normally the case. Your medication has been reduced and the voltage of the stimulator is set at a lower level than required. Hence you are experiencing tremour, regidity, bradykinesia, and dyskinesia .  Just be patient, these will disappear when the voltage is raised and the right combination of medication is given. In the meantime, you must put on some weight and do some exercise to strengthen your muscle, so that you can function satisfactorily at low voltage and do not depend on medication alone. Your battery will last longer when the stimulator is set at a lower level. Don’t just eat, sleep, and do nothing. You should either go back to your normal life style or develop some new hobbies. You must keep yourself busy and fully occupied. Then you can sleep well. Back to your association’s work and socialize…fine? Remember only you  could help yourself  in this respect …”

My wife said that was exactly what I told him: get back to work, and not go sleeping or close your eyes and dozed-off during the day; and stay awake during the night  “It is high time you buck up!” added Dr. M.K. Lee, “It has been nearly three months since the operation. To me you are the one with the least complaints and problems. Now you must do something yourself. Please put in some effort and make your DBS therapy the most successful one ever done by us …”

I then complained that I had not been able to sleep well at night. The doctor then said perhaps I could continue to take lorazepam (an anti anxiety drug); but not on long term basis. She said I was already addicted to it during the past few years, and I might experience ‘withdrawal symptom!’  It is quite true. I have been depending on lorazepam  at 2 mg. per night to fall asleep; the side effect is that I feel very sleepy or drowsy the following day. I tend to close my eyes even when watching television – after watching for 20 minutes or so, my eyelids become so heavy that sometimes I can hardly open them. (I read somewhere that this closing of eyelids is quite common among many PD sufferers, it’s a side effect of anti-Parkinson’s drugs; in some patients it is an ailment by itself.)

From my experience, DBS is not simply the implanting of three components (the electrodes, the stimulator and wire connecting the two) and setting the voltage which give maximum benefit to suitable PD patients. It involves changes in life-style. There are many do’s and don’ts which one must be re-educated. Life is never the same again after DBS. There are so many new things to learn – including walking, and some old style of living or old habits have to be unlearned. In short, the patients themselves must make an effort in order to get the maximum benefit of the DBS therapy. In this respect, cooperation between the patients and their physician in the follow up programming of the stimulator and readjustment of medication is as important as the surgery itself!  “DBS therapy gives me back my life,” exclaimed some patients immediately after the surgery. A few weeks later, they discovered that the effect was only temporary and felt extremely disappointed. Some patients may find that they are worse of or no better than before the surgery when old symptoms resurface. One must be realistic and not have too high an expectation on DBS therapy – a point which the doctor must explain clearly to the patients and they must accept the risks involved as well as variations in its effectiveness among different patients.  PD will continue to progress even after the surgery, its effectiveness may last several years – but it will cease to have any effect one day! This is a fact one must realize, whether you have or do not have DBS surgery.

This is my story so far. I shall continue in future if there are new developments or changes in follow-up readjustments to the programming of the stimulator, and of course if there is any further improvement or otherwise. After 6 months, I may be able to say whether or not, my DBS surgery is a success and what percentage of success I have achieved.