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.