I sent out my Brachial Plexus MRIs and chest x-ray to Chennai via FedEx yesterday. Having surgery in Chennai will cost me much lesser than HEI. But I am afraid. As such I sent our S.O.S e-mails to Dr. Lekovic and when he did not receive them, I e-mailed Dr. Friedman telling him what’s happening and asked if he’d alert Dr. Lekovic for me.
I really appreciate Dr. Lekovic’s gentle approach to NF treatment. He is patient at removing tumors. That’s why I can still see today despite having an Optic Nerve Sheath Meningioma. In November 2008, MRIs revealed a tumor growing on my only functioning optic nerve. But doctors were unsure what type of tumors it was. If it’s a schwannoma arising from the nerve sheath, they could remove it without damaging the nerve fibers inside the sheath or they could irradiate it safely too. So I went to L.A. intending to remove the tumor.
During surgery, they did a biopsy before attempting to remove it. Biopsy results indicated that the tumor was a Meningioma and not a Schwannoma. This means that the tumor grew out of the Meninges – a layer surrounding the brain. It had extended into the brain to engulf the optic nerve. This means the tumor was partly attached to the meninges and partly attached to the optic nerve. Forcibly removing it will cause the nerve to snap.
During surgery, Dr. Lekovic also saw that the tumor merely attached to below the nerve without encircling it so Gamma Knife Radiosurgery could be safely performed at a later date without ‘frying’ the nerve. ONSM typically encircles the optic nerve so irradiating the tumor will ‘fry’ the nerve inside it. But he saw that mine did not encircle the nerve.
Hence, he aborted the surgery without removing the tumor, but he decompressed the nerve by removing surrounding bones to make extra room for the tumor to grow a while more without pressurizing the nerve. Then I came back to Malaysia and spent the next three months raising funds for radiation treatment. During that three months, the tumor could grow a bit more and safely.
Typically, irradiating tumors can cause the tumor to swell. But since we already decompressed the nerve, the tumor could swell awhile after being treated with GK without causing vision disturbance.
As you can see, Dr. Lekovic tried to avoid damages every step of the way.
Whenever I speak with doctors locally, they showed little hope for NF. Surgeons were quick to tell Mom and I about their past NF patients who were either paralyzed or died prematurely.
A local Neurologist said she did not know any surgeon who could remove my tumors without risk. Logical. I was telling her about Dr. Lekovic’s approach to my ONSM and asked if she knew any surgeon with attitudes like his locally.
Well, even Dr. Lekovic would say every surgery has risks. He’d brief me on the risks so that I will be prepared and know what to expect. But he does not let it stop him from trying his best to mimize damages.
From what I observe, local doctors understand NF as a morbid illness so they do not even try to avoid damages. If nerves are damaged, that’s just the way NF is.
It’s their mindset. Otherwise, I see no point in telling us about their ex-NF patients and the complications their patients suffered the moment we sat down. Although I could not hear these doctor speak, their facial expression and body language says it proudly like an accomplishment.
I am scared to depart from Dr. Lekovic’s care because I recognize and value his gentle approach to NF tumors. It’s in his character. Even in removing the staples that held my wound shut, he removed them without causing me any pain. In December, a Fellow removed them for me instead. She yanked them out and I felt pain. Dr. Lekovic himself would have losen the stables without force at all.
I guess that’s why some surgeons damage nerves when removing tumors and some won‘t.
The Brachial Plexus is a nerve complex, with vital nerves cris-crossing each other. I know Dr. Lekovic would approach the tumors here gently both in planning the treatment course and in removing each tumor.
Neurosurgery is like sewing and stiching. A piece of cross-stitch can be accomplished any way, but impatience will produce a messy underside.
I am not saying Chennai doctors might be bad. Just that I don’t know them personally.
It is likely that I will need another USD50,000 for surgery at HEI. While the cost of surgery in Chennai would be USD7,500.