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.

New Year, New Life, & New PA Needed

I hope everyone had a memorable Chinese New Year celebration recently! My CNY was slow as usual. As my parents aged, our family life grew more and more private. We only contact and meet up our relatives when there is a need to. My cousin and his family in Dubai visited us like they often did. My mother’s sister who lives in Cheras visited us too. My friend Vimala had dinner with my mother and I twice during CNY. As my body was still weak, the slow CNY celebration worked just fine for me. Anyway, CNY holidays now has become very short for everyone, so maybe, it was not a loss.

I have been occupied with many different medical appointments, running from hospital to hospital, as my doctors are scattered. Oh yes, a thirteen year old NF2 patient and her family, who got to know me recently, visited my mother and I this CNY. Breaking traditions, I visited my Malay-Muslim neurologist in Assunta on the 5th day of CNY, because I wanted to skip the crowd. My daily life has changed tremendously. I now live very slowly because, with no balance nerve, damaged vision, and no hearing, it becomes nauseous if I move at my usual speed. So to prevent nausea, I now live like a tortoise while my mind stays at it usual pace.

I am looking to hire a new part-time personal assistant. Because my current one has to leave by 1 March 2017 as her day job is becoming busier. Anyone who is in need of extra income, who is detailed and IT savvy? Please contact me. Salary is between RM400 to RM600 depending on how many times you can work here per week. Whatsapp me at +6 017-362 9042.

Hear Me Out at the Federal Academy of Ballet (FAB)

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.

Picking Your First Home: House, Condo, or Townhouse?

Buy House Picture

Someday, I will reach the stage where I will need to consider what kind of home would I want for myself and my future family.

While a large and significant life decision like a home purchase obviously requires a lot of thought and incorporates a complex buying process, the basic gist of choosing the perfect deal for you comes down to just a handful of questions. The biggest one is – what kind of home should you get in the first place? Just take a look into property portal like PropertyGuru and you will find yourself in a sea of different types of property for sale in Malaysia.

To choose your first home, you have to take a look at your family, your means, and your immediate future – and with a few basic questions, some key pointers, and a couple handy tips, you’ll be able to breeze through not just the process of picking one among the three, but picking the one, the actual home you’ll be living in.

Understand the Difference

First and foremost, it’s important to actually distinguish between a condominium, a townhouse and a house. While the differences are obvious, there are a few subtleties – especially in ownership. For example – while you know the difference between a house and a condo, what’s the difference between owning a condo and renting an apartment, aside from a larger one-time payment rather than monthly installments on a lease? Or how are houses and townhouses really all that different?

Condominiums

To begin with, let’s take a look at condominiums. Condominiums began as a trend in Europe and North America in the 19th century, with the first American condo being built in Manhattan, according to Condopedia. They’re defined as large community-owned properties. Each unit within a condominium is owned by a single owner, and optionally rented out to a tenant (or several tenants), but each owner also shares the costs and liability for a percentage of the building’s common space – that includes its amenities, hallways, elevators, and so on and so forth.

Once you go past that, however, you get a closer look at what the costs are. While you have to pay a single fee to buy the condo, you’ll also be faced with condominium fees on a monthly basis. These replace what you’d usually pay on a monthly basis for the upkeep of a home. Instead of swinging around the side of a twenty-story building with a bucket and a mop, though, your monthly fees go towards regular maintenance and upkeep for the entire building, together with the monthly fees of every other condo owner in the building.

However, aside from the costs for common area maintenance, you’ll also pay a monthly special assessment fee, which goes into a condominium’s reserve fund and is used in the case of a serious repair – such as a broken sewer pipe, or a broken HVAC system.

Houses (terraced, bungalow, semi-D)

When you’re the owner of a home, the responsibility for the home is yours entirely. If you’re paying off a mortgage, chances are that your lender will have to pay a certain amount to a home insurance company with the lender as an escrow account, so that in case something happens and you’re unable to continue paying off your mortgage, your insurance can partially cover the lender for their costs.
Additionally, property taxes and maintenance fees – or the time it takes to clean and trim the house yourself – all has to be accounted for when making a purchasing decision regarding a single-family house. You’re not just buying the four walls – you’re buying the lot and land, as well, and that makes it all yours. Whereas a condominium might be great for a young couple or an older couple years after their children have moved out, a larger family with kids might find it better to move into a house because of greater yard and floor space.

Townhouses

When you can’t afford an executive condo, much less a house, getting a townhouse is a great alternative. A good way to think of a townhouse is to take the condo and the house and to create a hybrid of the two. A townhouse complex is still a community project, with its own common areas and associated costs, yet each house itself has one actual owner. Each house might come with its own little porch, yet you won’t get much of a yard, if anything outside of the walls of the townhouse. For couples and smaller families, this is actually great news.

In the end, much of the decision comes from your budget and your family size. If you’re a couple, a condo might seem like a great investment – yet young couples often quickly become small families, and these are often more appreciative of a house. In that case, you could save money by renting a condo for the short term, before moving into a house of your own. Or, you could skip both, and decide on a townhouse in a nice neighborhood.

The Verdict

You will likely find yourself struggling to find the property that best suit your needs especially when Malaysia’s property for sale is mushrooming at an incredible pace. Personally, an executive condo does have a nice tiered security that makes us feel much safer but the trade off will be a smaller space. If you have sufficient budget, a fully gated houses will be the next best option when you can get both space and safety in one single package.

Sponsor Needed For 12th March 2017 Videography

Hello Supporters, I will be giving a talk at the Federal Academy of Ballet (FAB), Seksyen 14 Petaling Jaya on 12th March 2017. I have found a videographer to record the whole talk, to be shared online afterwards for raising more awareness about Neurofibromatosis, my foundation and my work. 2 video cameras will be needed to capture the event nicely. The cost for this videography is RM2,000. It includes editing work as well.

Would anyone like to sponsor this cost for me? Otherwise, I will just be using money from my own pocket. If you would help me pay for it, then I can save my money for other needs especially my health care. If you are interested, please WhatsApp me at +60173629042.

As the sum is not big, 1 sponsor who can fund the cost fully would be sufficient. So anyone who can fund the whole RM2,000, please contact me. Please WhatsApp as I am deaf.

Thank you.