The preparatory procedures may be lengthy and time-consuming, but from my experience with U.S. medical institutions, this will prove to be worth the while.

House Clinic, House Research Institute in Los Angeles has records of my medical treatments from 2004 to 2010, while the U.S. National Institutes of Health in Bethesda has some extensive medical reports between October 2010 and October 2011. When MGH physicians receive all my medical records, they are likely to vet them through and through. That’s how U.S. doctors work, or at least those that I choose to see.

So far, I haven’t met a local doctor who is prepared to do that. Or maybe they are simply not trained to appreciate a patient’s medical history. I don’t know…

I figured that Mom will not be too happy if I make her travel during the Chinese New Year season, so that was why I decided to visit Harvard in February and not sooner.

For your information, the NF2 gene was first cloned at Harvard University. They have an NF2 clinic wholly dedicated to Neurofibromatosis Type 2 diagnosis, treatment and research. Their team, made up of doctors across various medical disciplines, is specialized in NF2.

I have been eyeing the NF2 clinic at Harvard for a couple of years but found no reason to visit it since I could be treated at HEI and NIH previously. But now that even doctors at HEI and NIH could not find the cause of my deterioration, I have a good enough reason to visit Harvard.

Dr. Lekovic had repeatedly suggest that I should see an Opthalmologist for my vision changes. But from my last visit with the Opthalmologist at NIH in October 2011, my vision was found to have improved since October 2010. It’s now 20/50 as compared to 20/100 or something like that previously. My vision disturbance is not testable using standard eye exams. Hence, I believe it is not due to my eye per se.

But trying to visit this and that opthalmologist all over the places can be draining and frustrating, especially if they have only basic understanding of NF2. And then, I might also require the attention of specialists in other medical disciplines which would mean I have to go to other doctors all over the places, explain to them my medical history all over again and try to consolidate everyone’s findings.

To avoid all that headache, I decided it is best to visit the NF2 Clinic at Harvard Medical School – Massachusetts General Hospital.

Say, is anyone reading this residing in Boston, Massachusetts? It will be very helpful to have someone familiar with the area as our host and guide.

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.

Click this link to view the document.

Check out what’s mentioned on the 4th line. There is a tumor at my right lateral ventricle. I personally suspect that this is what we need to look at.

I have had a tumor removed from my LEFT lateral vemntricle in 2010, so I can recognize the similarity of the symptoms of that tumor and this one.

FYI, the lateral ventricles are where cerebrospinal fluid is produced in the brain. CSF is a fluid that surrounds and protects the brain and spinal cord – the central nervous system. If CSF flow is obstructed, pressure in the brain increases which can affect eyesight and cause headaches in the least, or death if left untreated for too long.

It makes your skin smooth and is suitable for all skin types.

The company that produces this soap has given me 90 units to raise funds with. They are sponsoring the soaps and not taking any cut at all, so I get to keep ALL of the proceeds for my surgery.

According to them, this soap has entered the Japanese market where it is well received by the Japanese. It has not previously been sold in Malaysia which makes me the first person to sell it in Malaysia and probably elsewhere in the world if you order it from me by air mail.

Each box contains one round block of the soap which measures 7cm X 3cm.

Each box is priced at RM30.00 and all of it goes to my surgery fund!

To order one (or some), please e-mail me at yvonnefmn(at)gmail(dot)com

You may either choose to receive them by post or you may pick them up from me at home personally. I live in PJ Old Town.

Thank you and happy new year!

“The right intraventricular nodule in the posterior horn of the right lateral ventricle measures 1.4cm.”

I thought it was odd that she pointed out my right lateral ventricle specifically but did not mention about the left, since the tip of my shunt is at the left lateral ventricle. Besides, the neurosurgeon at that hospital was not concerned. But now I know. I need to have someone look at my right lateral ventricle.

My new year’s resolution is to start working on my 2nd book. I already have the skeleton and a waiting publisher – the one that turned my 1st book into electronic format. I just have to stay focused and diligent at writing it.

Over the past year or so, I seem to have undergone some physiological changes that caused me to gain some weight, reduced my physical activity, changed my perception towards the environment and altered my personality somewhat. Writing my book requires me to sit in isolation and think for hours continuously, but I would rather be in communication with people these days. That is a change. Maybe I have grown more comfortable in my own skin, but while I can now better appreciate life in solitude, I have also grown so comfortable with myself that I am more open to others than before.

I have been told that my presence is comforting to others. I somehow put them at ease and make them forget about what was stressing them just an hour ago. So, I am trying to spend more time away from the computer and be in people’s company in real life to make a difference for others. This is why I appreciate every invitation and every opportunity to give motivational talks – because I have realized that it is not just my speech that motivates, it is my presence too.

Now, you might be wondering about my health especially since the sudden scare last week. A lot has happened in the past two weeks ever since I noticed that my head felt uncomfortable. It still does today, but the amazing thing about humans is our extraordinary ability to adapt and tolerate discomforts. The pressure in my brain has become tolerable, I have gotten used to it. But it’s impact on my vision is no mistake. It also drains me physically. Last week, Syahidah visited me at home with Satay as Christmas present. After talking with her in the kitchen for almost an hour, I suddenly look drained. In August 2011, we were fundraising at a two-day seminar in Genting Highlands where I was physically active yet not drained like this. Several others who paid me visits in the past two weeks have also noticed how I would suddenly look drained. If I choose to, I can easily tolerate this as well and not investigate any further into the cause. But knowing just how easy it is to overlook abnormalities is also the reason why I must stay vigilant and follow through with my quest to seek medical attention. After all, I want to continue giving motivational talks, and to do that, I must maintain my health.

A lot of neurosurgeons were on holiday throughout the past two weeks. I have requested Medicolegal of the NIH to send a copy of my medical records between October 2010 and December 2011 to Dr. Lekovic in Los Angeles and another copy to me in Malaysia. I hope the files arrive quickly. In the meantime, I also intend to seek a second opinion from the NF2 clinic at Harvard Medical School since they are dedicated to NF2 treatment and research. A local hospital just a stone’s throw away from my den has also offered to help in any way they can and is waiting for my medical records from the NIH to arrive.

Since the day my health took a twist recently, many people have come forward to help me raise funds for the impending treatments and offer their moral support. Their support and encouragement have been very comforting to me.

Would anyone like to have one of them? They are the last three of this size, color and design.

RM30.00 per piece.

E-mail me at yvonnefmn(at)gmail(dot)com if you are keen.

History

August 2002 – Multiple thoracic spine tumor removal
Dr. Johari Siregar, Chief Neurosurgeon of Kuala Lumpur General Hospital

April 2003 – Partial Right Acoustic Neuroma removal – Brain.
Dr. Johari Siregar, Chief Neurosurgeon of Kuala Lumpur General Hospital

September 2004 – Complete Right Acoustic Neuroma removal – Brain.
Dr. Rick Friedman and Dr. William Hitselberger, House Research Institute

October 2006 – Complete Left Acoustic Neuroma removal. Auditory Brainstem Implant placement- Brain. Jugular Foramen Meningioma debulked.
Dr. Rick Friedman and Dr. William Hitselberger, House Research Institute

November 2008 – Decompression of the right optic nerve, Optic Nerve Sheath Meningioma de-bulked.
Dr. Gregory Lekovic and Dr. Marc Schwartz, House Research Institute

March 2009 – Gamma Knife radiosurgery treatment of an Optic Nerve Sheath Meningioma.
Dr. David Huang and Dr. Gregory Lekovic, Good Samaritan Hospital

May 2009 – Surgical removal of an Olfactory Groove Meningioma.
Dr. Gregory Lekovic and Dr. Marc Schwartz, House Reaearch Institute

December 2009 – Surgical removal of a Trigone Meningioma at the brain’s Left Lateral Ventricle. The Contralateral Trancallosal Surgical Approach was used successfully.
Dr. Gregory Lekovic and Dr. Marc Schwartz, House Research Institute

August 2010 – Fenestration of the left lateral ventricle and implantation of a ventriculo-peritoneal shunt.
Dr. Gregory Lekovic, House Research Institute

October 2011 – Resection of subcutaneous peripheral nerve sheath tumor – right leg.
Dr. Ashok Asthagiri and Dr. Michael Cirivello, U.S. National Institute of Neurological Disorders and Stroke

Remarks:

My tumors are under close monitoring by doctors at the U.S. National Institute of Neurological Disorders and Stroke under a four-year research program that studies the natural history of NF2. At the U.S. National Institute of Health, I am monitored by a variety of medical specialists such as neuro-opthalmologists, ENT specialists, speech and language therapists, physiotherapists, occupational therapists, and so on.

My goal now is to look for other doctors in developed countries whose experience and knowledge on NF2 is comparable, if not better than, my surgeons at the House Research Institute and the U.S. National Institute of Neurological Disorders and Stroke.

Dr. Lim Heng Tien at Assunta Hospital believes that there are a set of bilateral tumors in my third ventricle that are partially obstructing the flow of Cerebrospinal fluid, leading to an increased pressure in the brain. He also highlighted a cranial tumor at the anterior fossa of my right brain. I personally suspect that the mass effect of this cranial tumor at the anterior fossa of my right brain may be affecting my vision and causing me headache when I physically exert myself.

My surgeon at the U.S. National Institute of Neurological Disorder and Stroke is also monitoring the cranial tumor. But he is looking out for any new weakness in my left arm and left leg as indication that the tumor needs to be removed, and not the kind of symptoms that I am experiencing, which are vision disturbance and headache that comes with physical exertion.

Another question I have now is whether there really are tumors in my third ventricle as Dr. Lim Heng Tien said there were, because my surgeons in the U.S. do not think there are any so far.

Contact me by e-mail at: yvonnef(at)gmail(dot)com