I think I might have blogged about the acoustic neuroma before. But considering that my previous post encouraged so much arguments about my condition, I might as well clear the air by writing about the AN again.
So what exactly is the acoustic neuroma?
The Acoustic Neuroma (AN) is the nastiest of all benign tumours. It grows in the auditory canal, and in the case of NF2, it grows ON the hearing nerve itself. What makes the AN more different on NF2 patients is that, it grows from the hearing nerve rather than the balance nerve, and it is made of neurofibromas instead of schwannomas, which causes its growth to be more unpredictable.
Why is it dangerous?
The auditory canal consists of 3 major nerves, which is the hearing nerve, the facial nerve, and the balance nerve. The canal is very compact. An inexperienced surgeon may sacrifice all three nerves along with the tumour removal. This will cause the patient to be deaf, paralysed on the face, and fall down all the time.
The Acoustic Neuroma is often not painful and its initial symptoms are ringing sounds in the ear, imbalance and gradual deafness. Many people fail to seek medical treatment at once, and until they do, the tumour is already too large to remove without risk.
And the risk ofcourse, is having the facial nerve severed and surrounding tissues scarred. There is also risk of surgical complications such as excessive blood loss and death.
The Acoustic Neuroma can be fatal
But the biggest threat is this. The Acoustic Neuroma grows right next to the brainstem. It will one day grow large enough to push the brainstem out of position. This was what happened to the AN on my right hearing nerve. Upon diagnosis, the tumour was already 3cm and considered malignant for a benign tumour. And because the brainstem was not in place, there was lacking of oxygen to my brain and I could barely swallow food. My surgery was classified as emergency. If I did not undergo surgery for another month or two, my brain will be completely deprived of oxygen and I will die of brain damage.
Why can’t I have the surgery done in Malaysia?
If I have a choice, I wouldn’t. The doctors here are not able to remove the tumour completely. My facial nerve will be severed and I will be subjected to radiation. Now, my doctors in US advices AGAINST radiation on patients of NF2 because our tumours are caused by a genetic mutation on chromosome 22. If radiation is done on the AN, not only that it might remain unchanged, it might grow at a faster speed and surrounding tissues will be severed, causing a follow-up surgery to be difficult.
There are many NF2 patients out there who opts for radiation and there are even some successful cases. However, there is no long term evidence that the tumours will not regrow. Should the tumour regrow 10 or 20 years later, a follow-up surgery will be very risky and facial nerve preservation will be a problem, and also, our brains certainly cannot take too much repeat surgeries on the same location.
My second surgery, to remove the right acoustic neuroma, was done in General Hospital Kuala Lumpur. The tumour was only partially removed and caused cerebrospinal (CSF) fluid leakage. The nerve controlling the right side of my face is damaged and I vommitted for almost a month due to infection. And I just found out, that some surrounding tissues were also scarred due to that surgery.
Fortunately, I found Dr. Friedman over the internet, who volunteered to remove the tumour for free. In September 2004, the residual tumour was completely removed without CSF leakage and the facial nerve was sparred.
My mention of SRS and the post-operative effects are only supportive points. But my main purpose of writing this post is to highlight the severity of the Acoustic Neuroma. Many people think that the worse thing will happen is deafness, critical imabalance, and facial paralysis. But they do not realise that the acoustic neuroma is right next to the brainstem and will cause death if left untreated. And because its location is among vital brain centres, to reach the tumour and avoid too much blood loss, is one big problem to begin with, especially for inexperienced surgeons.
Just in case if you’re wondering, I am a registered organ donor with Pusat Sumber Transplan National (National Transplant Library) I’ll have my organ donor card scanned and posted here tomorrow.