My Experience with Deep Brain Stimulation Surgery

Published on 26 May 2015  |  Posted by Cheryl  |  Filed under Parkinson's Disease, Deep Brain Stimulation

Deep Brain Stimulation surgery is a surgical procedure which involves placing two electrodes deep within the brain and a remote controlled battery (Similar to a pacemaker) just below the collar bone.

In 2009 I went to visit my daughter in Japan, and became very ill just before I was due to return home. After seeing doctors, visiting hospitals, delayed flights, wheelchairs and a night in Singapore I was able to return home. By the time I arrived back in South Africa I was a total wreck, physically and mentally.

Terrible thoughts went through my head. I wondered if this was this how my life was going to end. I wanted it be fast and painless - but something kept me going even though life had become unbearable.

My Journey with ‘Deep Brain Stimulation Surgery’ began in July 2010. I believe that your body and mind tell you when you are ready for change so I listened to myself and decided to call my neurologist for help. His receptionist said he'd call me back. My husband and I were in the car when I got the call. I remember it so clearly! I told him I was desperate and wasn't there something he could do to help me. After a pause he said, "You know, I've heard of a doctor in Pretoria who does an operation which has helped PD sufferers, hold on, I'll get his number for you". Now THAT'S what I call a real doctor! He actually cares about his patients. Somehow I scribbled down the details on the back of a card in the moving vehicle with a shaking hand, and was surprised to be able to read it when I got home.

I had had many false leads and hopes dashed during the previous 5 years or so, and I didn't know if I should follow this one too, I was exhausted and at the end of my rope. I was too tired to even lift the phone and dial. So I just lay down on my bed and watched TV until I fell asleep.

By December 2010 I had broken a toe twice, fractured my foot and broken my leg from falling and tripping. I don't remember where or how, but I came across the card with my scribbled handwriting, with Dr Slabbert's name and phone number.

By then I was so ill, I hadn't even gone into my studio for over a year. My hands shook so much I couldn't hold a cup of tea, never mind making my miniature porcelain dolls, and even making a phone call was difficult. I was a miniaturist who was just getting a lot of international attention - ironic, I thought. By this time I had become a recluse, never stepping out the door unless I absolutely had to. Still the urge to give this thing called survival one last go, gave me the strength to make the call early in January 2011.

When I saw Dr Slabbert at Pretoria East Hospital, I was worried that he would tell me I was not a good candidate for the operation, but in fact, he told me exactly the opposite. I was delighted, with renewed hope for my future. I needed a lot of money for this operation as the medical aid would only cover the actual operation and not the physical components needed. I was short of R80 000. My father generously offered me the money I needed. Bless him forever! He saved my life.

I was admitted 2 days before the operation, deprived of all my medication so that they could get an accurate result. Those 2 nights I paced up and down the corridors, unable to sleep or even rest as my tremors were really bad. The evening before the operation in June 2011 I confessed to the anesthetist about my last fall. We had emptied our pool for renovations and I had fallen off the top step, landing on my butt and fractured my coccyx. Although I was in agony, I had kept quiet about it until then just in case my surgery was postponed! The anesthetist told me I would be sitting for most of the op and would be awake, and assured me that they would give me a soft cushion and would make sure I was comfortable. At that stage I didn't even care if I lived through the surgery- anything was better than living like this.

Day 1: 16th June 2011: My hair was shaved off, and I was put to sleep for an MRI of my brain. They drew lines on my face and head for further accuracy during and after the op. I was shocked when I looked in the mirror. I looked like an alien!

Day 2: 17th June 2011: Had a battery of tests, including blood tests, heart scans, x-rays, and cat scans to be sure I was in the best of health possible to withstand the operation.

Day 3: 18th June 2011: at 6:00a.m. I was prepped and at 7a.m. wheeled into theater where I burst into tears. I told my doctor that I have never been so terrified in my life! The whole process is done while you are awake as the brain has no nerves. Once the initial local anesthetics were injected into my scalp where the halo would be placed and where the holes would be drilled, there was no more pain, just noises, pressure, beeps and chatter from the team. Now and then they would ask me to do certain things like look left and right, and move my arms and hands. I was sedated, but awake. I was taken to have another MRI to check the position of the electrodes, then went under general anesthetic once more to place the wiring and battery pack under my scalp, down my neck and into a pocket created just under my collar bone. By 4p.m. I was being settled into ICU. I felt severe pain as a result of the operation. Not from the brain surgery, but in my neck and chest where the wires and battery pack had be placed.

On the 5th day in ICU, the stimulator was activated for the first time. It was miraculous! My tremors just stopped within 20 seconds! I was kept in ICU for 6 days, then in the ward for another 6 days. I walked out of the hospital feeling like my old self. I understood that I was not cured, only my symptoms were controlled, and that the disease would still progress, but hopefully slower. A short while after the surgery my life was suddenly turned upside down once again. My father was diagnosed with a brain tumor. My siblings and their families turned against me for allowing my father to help pay for the surgery. There were horrible fights with my brothers. I visited and watched my father suffer from his own brain surgery, and tried to pacify my mother who was having episodes of dementia that almost drove me crazy with frustration. My father passed away 7 months later and my mother was put into a home. I never had the time to recuperate.

Despite everything that was going on around me I carried on. I was able to get through the death of my father, and chose to move on with my life as best I could without the support of my brothers. By December 2012 I was back to doing what I loved best - my miniatures. Although I was still struggling to make dolls I did my best and also turned my attention to other forms of miniature making. The Johannesburg Society for Miniature Enthusiasts had elected me onto the committee as workshop coordinator in 2012. I taught quite a few workshops myself and this went a long way in increasing my confidence which had been at an all time low since my father passed away. I was lucky to be involved in the club and chose to be content.

Videos of my experiences with Parkinson's: (Yes that is me in the videos)

Before and after effects of Deep Brain Stimulation Surgery on my Parkinson's symptoms

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