Changing Rhythm

Being physically limited may not be a bad thing sometimes. Helps me to slow down and be more relaxed. I used to be a neurotic person who not only stress myself but the people around me too. I have learned to be calmer and slower.

While I do this, I noticed that others are living like white mice. I wonder if it is me who no longer rushes or is it them who are moving faster than before. Can anyone enlighten me?

I am learning that less is more. In words, in actions, and even in time.

My part time PA remarked how I could accomplish so many things when I have only 3 hours with her (she only comes 3 hours a time, 3 times a week).

I reflected on it and I realized that I am probably more productive with just 3 hours in this condition, than having 24 hours fully autonomous because when I was fully autonomous, I procrastinated a lot.

Nowadays, most of the day I live slowly but write down what I want to do. So when my PA comes, I get it all done in just 3 hours with her help.

So I cannot say that being physically limited is an entirely a drawback.

I Do Not Use Prolife Energy

Recently, a parent of an NF2 patient drew my attention to a blog post with my story together with a product called Prolife Energy. I wish to clearly state that I have never used this product. Someone invited my mother and I to a place to try it one day in 2011. When someone at this place explained how it works to me, I declined immediately because I was worried that the energy it emitted would damage my Auditory Brain stem Implant in the brain.

I was surprised to see they used my story and my condition to promote the product without my knowledge even when I declined using it. I am saddened that such a thing happened. I hope such will not happen again. When you see articles about Prolife Energy and me, please take note I do not endorse it.

FAB Talk Photos Are Up!

My talk at the Federal Academy of Ballet on 12th March 2017 went smoothly and well. Much thanks to everyone who attended and made it possible. Our volunteer photographer named Yee Fan took awesome pictures of the event which can be seen at the Works of Gratitude website. Click here to view them.

Come Hear Me Speak In My Ballet School On 12th March 2017

A Portrait of Me & My Ballet Teacher

My name is Yvonne Foong, or Ming Niang – as FAB’s staff used to call me. I am a 30-year old Malaysian author with a genetic condition that makes tumours grow anywhere in my body throughout life. In order to continue living, I started a project to fund my own life saving surgeries at the tender age of 19, to pay for my much needed lifesaving surgeries halfway across the world, in the United States.

I used to dance ballet as a child for 7 formative years before my diagnosis. My family sent me initially so that I could develop a healthy self-esteem. We did not expect, however, that the experience would benefit me much more when my life became more challenging unexpectedly.

On 12th March 2017, I will be giving a talk at the Fonteyn Studio Theatre, to share in detail how ballet has enabled me to thrive above all odds in spite of my health challenges and familial struggles.

Date: 12th March 2017 (Sunday)
Time: 2.30pm – 5.30pm
Venue: Fonteyn Studio Theatre, FAB HQ

Federal Academy of Ballet
Bangunan FAB
1-3, Jalan 14/22
46100 Petaling Jaya

Tel: 03 -7957 3413 (Shanti)

Seats are limited. Pls call Shanti to book your place before 10th March 2017.

Acoustic Neuroma and Neurofibromatosis Type 2 in Malaysia

NF2 patients like myself will most often develop tumors on both hearing nerves in the brain. This tumor is called acoustic neuroma. It is one of the hardest brain tumor to treat due to its location adjacent to the brain stem. It grows out of the hearing nerve. The hearing nerve, balance nerve and facial nerve are connected to one another. The acoustic neuroma can grow to engulf all 3 nerves and more. It can also grow to compress the brain stem. Surgery to remove this tumor can be tricky due to the complexity of the location.

In Malaysia, NF 2 patients who undergo surgery locally to remove their acoustic neuroma often emerge with severe and irreversible brain damages. I have always wondered why couldn’t we remove it safely without damaging the brain, while some other doctors outside of Malaysia could do it. My most recent acoustic neuroma surgery at the US National Institute of Health revealed to me why.

In total, I have had 4 acoustic neuroma surgeries myself.

2003 – Kuala Lumpur General Hospital, Malaysia
2004 – House Clinic, Los Angeles
2006 – House Clinic, Los Angeles
2016 – US National Institute of Health, Bethesda

Only the first one done at KLGH when I was 17 years old resulted in brain damages. The surgeon also could not remove the tumor entirely. My facial nerve was injured. To prevent further injury, he aborted the surgery after 10 hours. My subsequent acoustic neuroma surgeries overseas did not result in brain damage.

I had this tumor on both sides. This is called bilateral acoustic neuroma. My right facial nerve is still weak today. Other than that, everything else is okay.

During my 2016 surgery, my surgeon at the NIH enlightened me on how the nerves could be preserved. It is by using a technology called “Motor Monitoring”.

During surgery, the patient is connected to monitors that give out warning signs to the surgeons when the surgical knife comes close to a vital nerve, alerting the doctor to be careful.

I am very happy to discover recently that Dr Lee Foo Chiang at Beacon Hospital, Petaling Jaya could remove the acoustic neuroma of a local NF2 patient safely without damaging surrounding nerves.

Neurofibromatosis patients in Malaysia are often limited to public hospitals because they require a lot of treatments across their lifespan which entails a lot of money over time. Unfortunately, our public hospitals are severely underfunded and understaffed, while NF2 patients will most definitely develop acoustic neuroma. Private hospitals like Beacon may be costly but more worthwhile.

I hope something will happen so that all NF 2 patients in my country can have the privilege to have their acoustic neuroma treated without damaging their brains.