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.