This page is especially written for fellow Moyamoya patients and their family
members who may be seeking support and information. Firstly, I am very sorry that this has happened to you. I hope that my story will offer you some comfort and hope in the midst of challenging times. Through my story I also hope to increase the awareness to this rare disease.
My name is Winifred Ling, a Malaysian Chinese and I am 38 years old. When I started having symptoms of Moyamoya Disease, I was 28 years old and lived in Singapore, where I underwent treatment. I am now back in Singapore after living in the United States for the last five years.
Since teenage years, I’ve had frequent headaches and my blood pressure was considered high given my age. This was treated for a few years in my early 20s. In addition, there is a known history of heart disease and stroke in my family, which puts me squarely in the high risk category.
In early April 2004, I started to experience numbness, clumsiness and slurring of speech on several occasions. I also had difficulty articulating my thoughts as words that came out from my mouth differed from what I had in my mind. These were usually resolved after several minutes and because of how transient the incidents were, I was hesitant to seek help. Still, I knew in my heart that something was wrong but I did not have the courage to face it.
As the symptoms recurred, I went to see three different General Practitioners, of which only one believed that I might have experienced Transient Ischemic Attack (TIA) because of my young age. What I learned from this experience is that when you feel that your health is compromised, please trust your instinct and persist in finding the right doctor who can assist you. Don't give up simply because doctors dismiss your complaints.
Eventually I had an incident, which clearly indicated that I suffered from TIA and that pushed me out of my denial. My tongue went soft, I was not able to articulate my words clearly and my right arm went numb. I couldn't feel any sensation and this lasted for about 30 minutes. By the time I arrived at the Emergency Department of Tan Tock Seng Hospital, I was feeling fine. Still I was admitted and referred to see neurologists at the National Neuroscience Institute.
I went through an intensive investigation, which involved numerous blood tests, X- ray, CT Head Scan, MRI Scan, Ultrasound, 2D Echo and TEE. From these, it was confirmed that I had suffered a stroke and that a few of my arteries were narrowed. At this point, I was not diagnosed with Moyamoya Disease yet, primarily because only the left Middle Cerebral Artery (MCA) was occluded and Moyamoya usually affects both sides of the brain. It wasn't until May 2007 when the disease had progressed significantly that I was officially diagnosed with Moyamoya.
That year I suffered multiple TIAs and was hospitalized five times, partly because of the difficulty in titrating my medication to an optimal level. I was diagnosed with Atherosclerosis given my symptoms and family history. To treat it I was put on an anticoagulant therapy and was prescribed Warfarin. I also took Simvastatin to control my elevated cholesterol.
Even though Warfarin was effective, it posed challenges to me because many commonly used medications reacted adversely to it, as did some foods. I found I could not take fresh vegetables containing vitamin K and all chinese herbs! I was put on a strict diet and blood tests had to be conducted frequently to monitor the international normalized ratio (INR), to ensure an adequate yet safe dose was taken.
During this period, I went through SPECT Scan and Angiogram and was referred to see a neurosurgeon, Prof Ivan Ng, who eventually operated on me in 2007. He decided against the surgery in July 2004 as I was responding well to my treatment and he did not want to subject me to the 5% risk of operation prematurely. However, he explained that the bypass operation would be inevitable if I continued to be symptomatic. In many ways, I am grateful that I had about three years of lead time to prepare myself for the operation.
Life moved on and I decided to work part-time following my stroke. I tried to live my life as best as I could but it was challenging because there was this dark cloud that hung over me perpetually. On the bright side, my relationship with Steven strengthened and we were engaged in January 2005. I developed a sense of gratitude in the midst of uncertainties and that kept me going.
Consistent with my blood tests and follow up treatments, I remained mostly
asymptomatic until early 2007. One day I noticed that I was seeing double images and this had never happened before. Anxious, I reported this to the neurologist, who immediately ordered an angiogram. At this juncture, the disease had progressed to a critical stage where the stenosis on the right had caught up with the left. In other words, I had Moyamoya Disease.
The first operation was for the right side and it was scheduled on 18 July 2007. Prior to the surgery, I had a long discussion with my neurosurgeon and the nurse clinician walked me through the Pre-Operative Guide for the surgery. It was really informative and helped to allay some anxiety and gave me the opportunity to ask questions. As mentioned, the operation was a huge success and I was discharged a new person within a week. What a miracle!
In the midst of my celebration and recovery, life threw me another curve ball and I landed back at the Emergency Department. This was three weeks post-op and I discovered that I had a severe allergic reaction to Phenytoin, an anti-seizure medicine that was prescribed as a preventive measure. I suffered typical symptoms of Steven Johnson Syndrome - my lips were swollen and I had fever, rashes and ulcers that mushroomed within hours. I could hardly eat and once again I was back in the ward. It is an understatement to say that I was in the pit emotionally.
Following the allergy, things went downhill because I started to get frequent TIAs on the other side of my body. Consequently my surgery date was brought forward to 17 September 2007. Even though I had to undergo a similar procedure to the last, I was very anxious and afraid of the higher risks that were involved because the left brain controls language and motor skills (given that I'm right-handed).
After the second bypass operation, I suffered another stroke, which affected my functioning severely. It was most unfortunate that it happened and it was such an anomaly that the surgeons could not determine the cause. On the other hand, I was very fortunate because I could have been paralyzed and lose my language ability completely. I will not deny that it was a very challenging time as I slowly rehabilitated and reclaimed some of my functioning. Yet, I do not regret going for the operation and as a result of my decision, I enjoy a much better quality of life now. I also discovered that I am stronger than I imagined myself to be and this is something that I will always hang on to no matter what life throws at me.
In May 2008, I went through another angiogram to ensure that the revascularization was successful and that completed the whole process. Seven years have since passed and I am very pleased to share with you that I have been asymptomatic and my health has never been better. Yay! I am still taking blood thinners (aspirin and persantin) and simvastatin and I have to follow up yearly with my doctor. But life is good.
Please do not hesitate to email me if you have any questions and I will be more than happy to answer your queries. Support is very important during the treatment process and I hope to be able to offer you that. Thank you for reading.