There is a more important issue than money

I have not been jotting down every small turns in my quest to find out the cause of my symptoms the past two weeks because everything is still tentative. I was waiting for my L.A. neurosurgeon to come back from his holiday before I sent him the CT scan report and point out the 1.4cm nodule at my right lateral ventricle to him.

Dr. Lekovic has now returned and replied my email. He says that the 1.4cm nodule has always been there but it is probably not a tumor since it does not enhance. Even if it were a tumor, it would not cause the symptoms as I have described them. From the look of my CT scan and MRI, there is no evidence of CSF obstruction from any cause.

Let me now ask Dr. Lekovic to personally refer me to other neurosurgeons for second opinions. He has done that for me before in 2009.

Meanwhile, Sin Chew Daily has managed to raise the RM70,000.00 which they aimed to raise for me. The money will be kept for me in trust by Sin Chew Foundation. Once I have decided on the course of treatment, Sin Chew Foundation will release the funds to me. To raise funds for me in advance is a very special favor from Sin Chew Daily and Sin Chew Foundation of which I am immensely grateful for.

As of 10th January 2012 which is today, the total funds raised is RM114,000.00. Concerned supporters have been asking whether the funds is enough so I’d like to explain how it works here.

At the beginning, I had thought that the neurosurgeon at Assunta meant my VP shunt was blocked and needed to be revised. Alarm bells in my head went off upon hearing that as VP shunt malfunction is an emergency. Without wasting any time, I proceeded to estimate how much a VP shunt surgery at House Clinic would cost based on my past experience, and I estimated RM100,000.00

With the help of my friends, I uploaded the CT scans from its CD and sent them to Dr. Lekovic at HEI and Dr. Asthagiri at NIH. Upon viewing those images, Dr. Lekovic said there was no evidence of VP shunt malfunction and the size of my lateral ventricles were normal.

The next day, I went back to see the neurosurgeon at Assunta to get clarification from him. I then learned that there was a miscommunication with this surgeon earlier. He explained that there is a set of tumors in my third ventricle. Their shape resemble Candle Wax tumors which are a kind of giant cell tumors. He said that they are partially obstructing the flow of CSF, not yet completely. He also highlighted a tumor at the right frontal portion of my brain which he thinks needs to be removed for it is also contributing to my symptoms.

After coming back from Assunta the second time, I related the neurosurgeon’s opinion to Dr. Lekovic. But he does not believe there are any tumors in my third ventricle either.

The cost of surgery depends on what the surgery involves. A tumor removal surgery will cost more than a VP shunt placement and revision surgery. Surgery in other U.S. private hospitals might cost more than HEI and St. Vincent Medical Center. But the important thing right now is not the cost of surgery. What’s important now is getting to the bottom of my sudden change in physical condition.

Many concerned members of the Malaysian public have been trying to do their part to help me by recommending various local neurosurgeons, both at public and private hospitals. I appreciate your concern and desire to help. However, I have consulted local neurosurgeons at public and private hospitals on my own before, and I have learned that many Malaysian neurosurgeons themselves do not appreciate it when NF patients go to them directly and out of a sudden. They have no experience in the patient’s case and not familiar with the patient’s medical history. It must be remembered that I have Neurofibromatosis Type 2 – an entire medical condition on it’s own and I have an elaborate medical history. The doctor must not only have some experience operating on NF2 patients, but he needs to be well learned about NF2 and it’s treatment. NF is actually not a rare condition. Every doctor has to study about it generally. But only a handful of doctors around the world are truly familiar with the natural history of NF.

To help you understand what I mean, let me use the Candle Wax tumor hypothesis as an example. A doctor familiar with NF2 will first ask whether NF patients can possibly develop giant cell tumors. It could also be a Schwannoma – a kind of tumor that is formed by the Schwann cells of the nerve’s myelin sheath – or it could be a meningioma – a tumor that is formed by cells of the brain’s meninges. All tumors have different characteristics and require different surgical treatment.

Using a wrong surgical approach for the wrong type of tumor can endanger the patient’s life too. That’s why it is so important to ascertain the condition before going into surgery.