Moyamoya Disease - My story
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 47 years old. When I started having symptoms of Moyamoya Disease, I was 28 years old and lived in Singapore, where I underwent treatment.
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.
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 major 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 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.
Write a comment
Ling (Friday, 30 September 2011 18:59)
An inspiring post--thank you for reaching out and offering support to others!
kevin aloysius paul (Sunday, 02 October 2011 22:42)
wow.. winnie.. yes to life indeed :) thanks for making time for me.. will forever keep it close to my heart.. live long and well..
GY (Wednesday, 05 October 2011 04:56)
oh my, Wini. Thanks for sharing that. Yes to life :)
Melanie (Wednesday, 12 October 2011 00:56)
Your story is amazing Wini, thank you for sharing it with me. You are truly inspiring <3
Mei-Ling Louie (Thursday, 08 December 2011 13:58)
I also had surgery for Moyamoya at Stanford, CA are you on Facebook? Would like to chat.
winifredling (Thursday, 08 December 2011 14:06)
Hi Mei-Ling, thanks for your note. I will be happy to chat more. How about sending me an email by clicking "email me" on this page and we'll take it from there. Looking forward to hearing from you. Cheers.
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sunny (Saturday, 16 March 2013 04:54)
Can i know the food diet for moyamoya disease
winifredling (Sunday, 17 March 2013 12:35)
Dear Sunny,
To my understanding, there is no specific food diet except to eat healthy and balanced meal. Less processed food and eat with lots of fresh vegetables and good protein.
sunny (Thursday, 21 March 2013 00:03)
thank q winifredling
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ofelia lam (Wednesday, 29 January 2014 02:13)
I was found MMD on Oct.2013. I'm not so scare because Dr. said I'm 56 now. Usually MMD occur in young people or children. I'm a Chinese Female. I still have interesting in my illness.
Charlotte (Saturday, 02 August 2014 17:31)
Hi my 20month old little boy suffers from moya moya I was just wondering do the strokes stop completely after the operations or can they continue.
Someone please get back to me on
07858135555
winifredling (Sunday, 03 August 2014 16:11)
Hi Charlotte, I am very sorry to hear about your little boy. My operations were done 7 years ago and I have not had any recurrence of stroke. As far as I know the recovery for young children should be good. Please email me directly through http://www.winifredling.com/contact-me/. Hope to hear from you and i wish you all the very best.
Babs Holmes (Wednesday, 29 October 2014 22:30)
What an amazing woman you are Winifred! My friend's 7yo son has Moyamoya. He is not in a good way after surgery earlier this year. My question is, are you still on anti-seizure medication and which one? It sounds like your doctors anticipated there may be seizures after your operation? Thankyou so much for sharing your story.
winifredling (Thursday, 30 October 2014 01:51)
Hi Babs Holmes, thanks for your kind words. I'm sorry to hear about your friend's son. No, i am no longer on anti-seizure medicine. I was on Phenytoin which i was sadly allergic to, which i learned the hard way. Yes, the doctors anticipated the seizures but i didn't have any. You're most welcome. If you have more questions, please feel free to email me. Thanks for commenting :)
cheboogie (Monday, 03 November 2014 04:49)
@Winifredling, it is a pleasure reading abut your story. My fiance was diagnosed with moyamoya in 2009 after having a stroke at work as a medical assistant. She underwent a bypass o the right side that was successful but has minimal blood flow there. She still has headaches everyday and has been advised by 4 neurologists to not work. In September 2014 after having an angiogram we were told that moyamoya started to progress on the left side but no surgery as of yet. Doctors want to continue to monitor her closely. Your story is inspiring and i know she will read your story when she awakes in the morning, (she is sleeping now). I am so grateful to have read about your experience and i know my fiance will want to contact you just to share her story and connect with another person who can relate. I believe we need to get the word out about this rare disease. I have written many medical talk shows to try to get them to bring awareness about moyamoya but havent had any luck. The show The Doctors did a brief segment about a fellow moyamoya survivor but didnt get into any detail about symptoms, treatment, etc. I believe there are so many people who have this and may never know until its too late because most neurologist know very little about the disease. Thanks for sharing your story and may you continue to be blessed. YES TO LIFE!!!!!!!!
Christie6 (Tuesday, 20 January 2015 00:44)
Reading your story was very inspirational for me because I was diagnosed with MoyaMoya in 2012 after I had a stroke that left me partially paralyzed on my left side and after 3 years of basically being a lab rat my Dr at Vanderbilt Hospital in Nashville Tennessee has finally decided I need surgery. I see him Monday January 26, 2015 for him to tell me about the procedure, recovery, etc... but the main thing is I am finally going to get my first surgery on the right side of my brain. I am excited and scared at the same time. I know God is in control and whatevers going to happen will happen, I pray I have a success story to tell as you and everyone else has.
Christie
winifredling (Wednesday, 21 January 2015 14:46)
@cheboogie, thanks so much for leaving a comment. I am very sorry for not seeing it sooner. Yes, please do email me.
@Christie6
I'm sorry to hear of your stroke. I will be keeping you in my thoughts and I hope that all goes well for your first surgery. I understand the mixed feeling for being scared and excited at the same time. I will keep you in my thoughts and prayer. Please do send me an email so that we can keep in touch. My best wishes to you, Christie.