I seek gentle doctors in Neurosurgery

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.

As a child, Yvonne Foong dreamed of growing up to help others. To achieve her ambition, she began studying to become a psychologist. But things changed when tumours were discovered in her body at the age of sixteen. She was diagnosed with neurofibromatosis type 2 -- a genetic illness with no cure. Fighting for survival, Yvonne turned to fundraising and embarked on a medical odyssey to the United States. Her experiences since then have transformed her into a motivational speaker; inspiring hope, faith and strength. Yvonne is currently working to establish a humanitarian foundation that provides NF patients in Malaysia with financial and logistical support. Visit Works of Gratitude to learn more.

Posted in miscellaneous
6 comments on “I seek gentle doctors in Neurosurgery
  1. keisha says:

    oh, Yvonne, you should do what you’re most comfortable with doing.

    But please remember to have faith in my doctors simply because I do. Dr. Bala has a very kind nature too and will give his best to your treatment.

    Do you remember when I had SRS done for my trigeminal schwannoma? Dr. Bala distracted me from the pain of the local anaesthesia shots by annoying me about my blonde highlights in my hair! They decided to put the frame on with local because general was too risky at that time because of my deformed spine.

  2. sabrina says:

    Perhaps the best thing is to stick with someone who knows your history. Most patients will seek out professionals who are familiar with their cases. The trust has been built already.
    They will only switch if things get pretty bad or desperate.

    Just do what your heart feels right.

  3. Richard says:

    I am sure Dr Bala is good and competent, as attested to by Keisha. I would view it this way – as Keisha is comfortable with Dr Bala, in the same way Yvonne is comfortable with Dr Lekovic. As Keisha would, I think, stick with Dr Bala, so Yvonne would stick with Dr Lekovic for the reasons each have.

    I agree with Sabrina – ‘Just do what your heart feels right.’

    The financial costs would be the last consideration, if a factor at all. I am sure your friends would stand by you whatever your choice, and financials is not a factor at all.

  4. There are many doctors around but not many with the heart of gold. If Dr.Lekovic is the person that you trust the most, then stay with him. Don’t worry so much about the financial factor, we all will help you out because that’s what friends are for.

  5. keisha says:

    Richard,

    it’s worth mentioning I trust HEI doctors too as I was once a patient myself.

    I sought the opinion from a different country because I was looking for doctors just as competent but with a much cheaper price.

    This is just my opinion, she should proceed with whatever that is most comfortable with her.

  6. Yvonne Foong says:

    Sabrina: True that. Doctors who know my history will be able to foresee the outcome of everu course of action better and plan accordingly. I have witnessed some delays and glitches when medical staffs are unfamiliar with a patient. Like right now, Holly is having a fever in the hospital and they are still trying to find out what had caused the fever. My blood pressure tends to run low after surgery. After a recent surgery, the nurse expressed her surprise and she remained alarmed until she had a look at my medical records. Then she realize it’s the way my body responds to surgery. She calmed down and did the necessary.

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