Yvonne Foong

A very supportive and helpful anesthetic medical officer of a local public hospital wants to find ways of helping me apart from helping to sell my books and t-shirts on her end. To help her better understand my medical history and background, I wrote the following information down and sent it to her this morning. You might find it useful too.

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.

My surgeons at the House Clinic in Los Angeles and the National Institute of Neurological Disorder and Stroke in Maryland have not come to a conclusion as to what is causing the pressure I feel in my brain. As different doctors may interpret CT and MRI scans differently, I hope that other doctors experienced in the surgical managament of NF2 from around the world would come forward to help me determine the cause of my symptoms. Your help is much needed. Thank you in advance.

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

On Friday evening, my CT scans were zipped and sent to the surgeons via a free online file-sharing service. They reviewed it but did not see any tumors in my third ventricle like the Malaysian surgeon I saw said there was. I also told the L.A. surgeon about the Malaysian doctor’s in-depth opinion, but he said that it didn’t appear to be very sound.

I continued to tell the L.A. surgeon about changes in my vision and pressure in my brain that affects me when I physically exert myself. He then said I should get this checked out by an ophthalmologist. But I told him that I’ve been seeing Ophthalmologists at the NIH during my visits over the past one year. But my vision disturbance is not testable and does not show up on eye exams. In fact, they found that my visual acuity has improved since the Gamma Knife treatment we did in March 2009.

Then, I remembered another thing the Malaysian surgeon highlighted. It has to do with the cranial tumor just beneath the skull on the right hemisphere of my brain. It measures 2.54cm. I suspect that this tumor may also be causing a mass effect on my brain as it hurts me sometimes. This tumor happens to be located above and near the right optic chiasm. My NINDS surgeon has been aware about this tumor and is closely monitoring it. But he is watching out for any signs of weakness in my left arm and leg as an indication for surgery instead. Vision disturbance has not been mentioned as a possible symptom that I need to look out for, so although I’ve been experiencing vision changes for over a year, no conclusion has been drawn.

My concerns now are:

1. Are there really tumors in my third ventricle?
2. Is the right cranial tumor causing my vision disturbance and other difficulties with physical exertion?

I went to see the neurosurgeon I met on Monday again to get clarification from him this evening. It turned out that I misunderstood him on Monday. What he meant was there are two tumors at my brain’s posterior fossa at the 3rd ventricle which are obstructing the flow of CSF. They are a set of bilateral tumors, namely Candle Wax Tumors which are giant cell tumors in the ventricular system arising from the ventricular wall.

The frontal lobe is dilated as a result of this. This is something I can feel.The right side of my forehead feels full and hurts sometimes. This is putting pressure onto my right eye, making my vision blurry and dull.

Now, this is interesting. I have been complaining about vision changes for some time. My vision gets worse with physical exertion which I suspect could be related to my cerebrospinal fluid.

Next step – I am getting second opinions on this.