Invited Pei Lee to my house this afternoon. Returned her ATM card and bankbook. Told her the pin number as well, so she may withdraw money to pay for her healthcare whenever necessary.

Pei Lee said she is looking for some simple work to do at home for money. Let me know if you have anything in mind. I’ll put you in touch with her. Remember Pei Lee’s highest education is standard six, she doesn’t speak English and she knows little Bahasa Melayu. She has NF2 and she is deaf, so don’t give her heavy work.

Pei Lee also hopes to sell her desktop PC. I’ve never seen it before, but according to my friend who saw it once, it might be a low specs computer. So let me know if you are interested.

Remember Pei Lee said she was seeing a “tabib cina”, chinese doctor? Found out today her tabib cina did not prescribe her ubat cina, “chinese medicine”. The tabib cina guna ubat orang putih. Namely, Terraquant. My bad for assuming. Terraquant is some new invention to relieve pain. It also claims to promote cell activity.

In the afternoon, I took Pei Lee to Segi College. Introduced her to Shaun, Roshan, and Reuben.
Reubs communicated with Pei Lee in written Chinese.

Now Yvonne needs to set an MRI and visual field test appointment. Jangan lupa!

Here goes something to consider. Pei Lee’s Maybank a/c currently has RM6,394.00. When we took Pei Lee to Sunway medical, she had about RM3,000. I guess people kept donating.

Pei Lee had been going to a Chinese Herbalist for two months who prescribed her some medicine daily. She claimed to have been healed because her pain ceased. (My doctors said pain is not associated with nerve damages so maybe it was something else). I haven’t seen her lately, so I don’t know how her walking looks like now.

Since Pei Lee does not need surgery soon, I wonder what am I going to do with the money meant for her.

1. Should I hand it to her? Treat it as a gift. Tell her it is for her medical treatment, but it is up to her how she wants to manage it.

2. Keep it in the bank, so when Pei Lee does need anything, we would have money ready for her. Something is not right with this choice, which I can’t pinpoint. Is it a legal issue? I feel odd having control over the money. There are others who may need help, which often makes me think I could be helping them.

3. Take the money and donate it to a good cause. Ah, I think this would go against the law as the account belongs to Pei Lee and besides, people donated to her, not anyone else.

4. Manage Pei Lee’s healthcare. ie. Pay for her periodic MRI scans. This is least viable as my ability and resources are lesser now. Mom started working again which means I can’t travel much. I also want Pei lee to be independent. When I pay for the MRIs, I would have to advise her which hospital to go to, and follow up with her doctor at that hospital, which is taxing.

Oh, yes, notably, the difference between private and government hospitals in Malaysia is the amount of effort a patient needs to put into managing their own health-care.

5. Squander the money!

SJMC sent me a letter saying they investigated my complain and “explained” to me what had happened between that doctor, Pei Lee, and I.

I don’t know where their conscience are. But, hello, I did not write in to receive the doctor’s opinion on why he refused to see Pei Lee. It was his manners. And if truth is so simple, do you think I would take the trouble of writing in?

I am complaining about the doctor’s manners! And frankly, his opinion was not conveyed to us because his rude behavior overshadowed all else. His written words to us on that day consisted of one liners and brief remarks. Can that explain much in 10 minutes? You be the judge. (Note that one liners weren’t all to his rudeness)

Ok, let me give you an example. Supposed this was the case. “During the Dr’s consultation, he discovered that she had previous surgeries done in GHKL and she has now presented a new problem at a Cervical Neurofibroma causing Neurological problems. As there was no letter of referral and MRI reports, Dr. could not make an accurate diagnosis of her present condition.”

That is the hospital’s explanation. Now Supposed the Dr. actually said to us…

Yvonne: She was previously treated at GHKL.
Dr: *makes a face* Go to GHKL. See Dr. Ng.
Yvonne: But that’s where we came from. We want you to see her because she said she feared GH doctors might not be able to treat her.
Dr. *Makes a face again* Go back to GH. Here very expensive.
Yvonne: Doctor. The fact that we decided to come here says a lot about our intentions. No?

Do you think that explains what the letter explained? Also, please note that Dr. did not suggest an MRI until I ASKED FOR IT. THAT IS AFTER THE DOCTOR TOLD US TO GO BACK TO GH! But the letter says otherwise. Ok, maybe the doctor has poor memory. But if he is unsure, then don’t try to cover up, just say he wasn’t sure what happened.

Another point, those in bold were the exact words in the letter. Now, note that at the end the hospital said the doctor could not make an accurate diagnosis. Then, why did he assume it was a cervical lesion based on our minimal explanations? We weren’t even given the chance to explain much and he did not even test out Pei lee’s legs by running a physical examination.

If he could not make a proper diagnosis, why did he formulate any opinion without further investigation? So is that letter inconsistent?

You know, in the U.S. I have done several one-off medical consultations like this. And the doctors there never made sweeping remarks like he did.

So did we give tje doctor a reason to be rude? I don’t think so. Even I, when seeking medical treatment for myself, have met with doctors who could not help me, who had to suggest alternatives, but none of them EVER spoke to me the way that SJMC doctor did.

Actually, this doctor seems questionable based on another friend’s experience being treated by him. If I knew it was HIM who RECKLESSLY managed my friend’s surgery, I would not see him at all!

I really hope my friend would go ahead and take legal action against him, because she suffered actual damages due to his negligence, That ought to teach him a lesson.

So what am I going to do now? Sabrina suggested I pursue further. Should I? Where do I go? But we haven’t got any evidence.

Oh, I wonder why the nurse who stood behind the doctor kept grimacing, as if she, too, was embarassed with the doctor.

Mom and I took Pei Lee to GHKL this afternoon where we tried looking for her consultant neurosurgeon. The staff were familiar with me so it was easy to get around the hospital bureaucracy. Unfortunately, we were a little too late. Dr. Ng left the office right before we arrived. So we’re going back again next Tuesday. I would have miss my study with Reuben and rush back for a class at 2pm.

Pei Lee said the pain at her waist has been disturbing her sleep at night. She claims that Dr. Ng advised for surgery, but Pei Lee is concerned that doctors in GHKL are not skilled enough and might cause her total paralysis. She wants to get treated at private hospitals, and since we would need a new MRI, Pei Lee suggested doing the MRI at private hospitals too.

She claims that Dr. Ng said she should only get an MRI done in GH KL if she decides to have surgery done there. I do not know his reason. But maybe it’s for exclusivity, if you get what I mean.

Personally, I feel good quality MRI is important. Dr. Friedman said my scans done at GHKL were bad. But in Pei Lee’s case, I’m still unsure of what to do because even with good and new MRIs, the radiologist and surgeon must compare them with the old set of MRIs to spot differences in tumor size. That is how they can identify the exact problematic tumor.

Maybe we should bring Pei Lee straight to Wijaya Medical Center. I wouldn’t go there myself without prior investigation, but Pei Lee’s condition is fast deteriorating. I am afraid we do not have much time. Mom and I both agree Pei Lee’s walking gait has changed for worse.

While we sit pondering the many, many routes, Pei Lee lies awake in pain. Though I wish she is able to tell me what pain is it exactly.

I hope to see Dr. Ng myself and discuss Pei Lee’s case with him. There are many things we need to know that Pei Lee cannot comprehend, and thus cannot communicate anything to us.

1. Did Dr. Ng say which tumor he thinks is problematic?
2. Are the offending tumors recurrent?
3. What mode of surgery does Dr. Ng intend to perform, and why?
4. How high are the risks?
5. How big is the tumor and what cells is it made of?

While Pei Lee hopes for simple things, i sit running these dilemmas through my mind, digging a deeper gulf after each question mark. These information are vital when deciding for surgery.

There must have been a thoughtful scowl worn on my face, for she asked again, “There is a large tumor at the back of my head (brain). Did you ask the U.S. doctor if he can remove it? How many hundreds will it cost?”

I feel like choking her. “Pei Lee, there are MANY tumors in your brain. They should only be removed if you are experiencing symptoms.”

Someone advised me to let Pei lee’s doctor decide for her. Whether good or bad is up to fate. Yeah, and if it turns out bad, I would regret for the rest of my life.

But if I did try, at least I tried.

Yesterday was tough, a turning point in life. DR. Schwartz examined my legs again. He said I have two tumors at the thoracic spine where tumors were removed in 2002. Since they are recurrence, surgical management is very dangerous and complicated. The progression is still mild now. At a later stage, I will be falling down. If the tumors are clearly enlarging by the evidence of future MRI scans, treatment may be considered. But Dr. Schwartz is not confident in this surgery. He said maybe someone out there may have a different opinion, and suggested Cyberknife Radiosurgery as well.

From a neurosurgeon’s perspective, he could not explain my other symptoms which are tiredness, feverish symptoms, sometimes nausea, and so on. He suggested checking my thyroid. I’m beginning to believe these are my body’s way of consuming itself.

He also reminded me of the Optic Gliomas. Need to have regular visual field tests. If vision is worsening, we need to de-bulk the tumor to prevent further damage to the optic nerve. Otherwise, it is best not to touch it.

Dr. Schwartz said if my Jugular Foramen Meningioma is growing, I should have difficulty swallowing. That is the hallmark symptom.

I showed him Pei Lee scans, which he kindly reviewed at no charge. In fact, the whole consultation was free. Dr. Schwartz said Pei Lee needs to be seen to determine whether her problem is due to the Cervical, Thoracic, or Lumbar spine. The information Pei Lee gave me is insufficient, but generally, her chances are similar to mine, unless the weakness is progressing, then something should be done to prevent further damages.

I often tell people that NF is incurable, that medicine can only treat, not heal. From now on, NF to me is never the same again. It will continue to take things away until my body has nothing left to surrender. I often advocate the will to live and persevere. It was because I still had many chances. But now, my will and my chances are dwindling fast. The pain of surgical wounds I can tolerate knowing they will eventually go away, but this realization pierces the heart. No matter how hard I try fighting against the current, my body is heading to a point of no return. There is nothing to bring it back.

This is what NF really means.

For the very first time, I cry in grief due to NF.

By the way, Dr. Schwartz canceled the week’s appointments because his wife was in labor when he saw me. Since I came from Malaysia, he made the sacrifice to come to the clinic for me. No wonder he seemed happier than usual!

Thank you Yi Liang, for accompanying us today.

I’m tired. Spending two hours in the hospital with Pei Lee took me a lot of energy. I may seem tough and healthy on the outside, but when I come back, the tiredness engulfs my body, my back gives in to an invisible weight. It feels like I ran the great marathon of life.

But I cannot give up. This is one battle I ought to fight. Dr. Wong Fung Chu was helpful. By just one phone call, he managed to extract Pei Lee’s MRI files from GHKL. Not every doctor is willing to help a needy patient. Even so, I had to explain where we were coming from.

Dr. Wong: A full MRI here costs RM2,500.
Yvonne: Is it possible to refer her to Assunta Hospital for an MRI?
Dr. Wong: If she is concerned about the cost, she shouldn’t seek treatment at private hospitals.
Yvonne: Dr. Wong, we’re here because of you.

Personally, I have sought opinions across the sea and continents. I have communicated with doctors in India, Japan, Singapore… even China and Australia. Dr. Friedman once sent my scans over to the east coast for a second opinion. To the local doctors, Dr. Friedman’s act of kindness would have equaled to throwing his business away.

Having been operated abroad, the health profession in Malaysia suddenly becomes alien to me. What’s important abroad, such as doctors’ expertise and experience, are only secondary in Malaysia. For example, how could we simply go to any Neurosurgeon to have our spine tumors removed, without first finding our whether he has any experience with NF tumors or spine surgeries at all? Note that every case is unique. Each tumor can be made up of different cells, which calls for unique considerations and surgical approach.. To assume that every Neurosurgeon can treat NF patients is absurd. More on this in another post.

I wonder why am I so easily tired these days. I should go for physiotherapy too.

Someone blogging for the Malaysian Medical Resources blog pointed out that my unhappy encounter with the Neurosurgeon last Wednesday could be due to miscommunication.

I still beg to differ, but will make it a point to deliberately mention, “a second opinion”, next time I mean it, to save the doctor the fear of being unpaid. But I never had to do so in the past. I’m sad to realize that money has become the first and foremost concern among some doctors.

Someone donated RM3,000 to Pei Lee, which appeared in her account statement today. Whoever that is, thank you VERY MUCH! I am touched and honored to know that you trust me in managing this case. I feel more responsible in finding the most appropriate healthcare option for Pei Lee. She has RM4,474.00 at the time of writing this.

To those who wish to contribute, please write a cheque to Lim Pei Lee. Her Maybank account number is 1-12223-24848-8, her I/C number is 790213-10-5420

Pei Lee is seeing a Neurosurgeon at another hospital next week. Someone from MMA pointed out that hospitals charging expensively may not be practical because Pei Lee needs long-term care. I agree.

Now what I have in mind is this.

1) Bring Pei Lee to see this doctor.

2) Discuss her healthcare needs. (based on her individual case, and not a generalized assumption of NF2 patients)

3) If she needs costly diagnostic procedures such as MRI, I’ll suggest referring her to Assunta Hospital for the MRI. With a doctor’s letter, Pei Lee can get the MRI done without seeing another doctor at Assunta.

I don’t want to bring her to Assunta straight because patients there are seen by Neurologists instead of Neurosurgeons unless they need surgery. Based on my experience, neurologists are not knowledgeable enough to treat NF2 patients, and in doing so, will cost more money in the long run.

4) If Pei Lee’s need for doctor consultation is infrequent, like once every six months, then we can well afford sending her to Sunway, don’t we? So, again, I intend to speak with this doctor what Pei Lee’s long-term needs are.

5) If she needs surgery on the spine, we’ll discuss the various choices out there, taking into account the costs and risks.

I find that healthcare decisions are like deciding between apples and oranges. Money vs. Quality, is separated by a very fine line.

* all monies are recorded in Ringgit Malaysia

Here is Pei Lee’s account so far. It is troublesome to post the statement using HTML codes. Another choice is to upload the spreadsheet document, so whoever wish to view it may download the file. But then, we’d have many versions the file circulating around. Do you have any idea? Can someone help code a program to reduce my burden?

I’ll try my best to record everything down, but it may not be possible everyday, because I have college to attend and work to do as well.

Meanwhile, I am bringing Pei Lee to see another doctor in a couple of days. This doctor’s contact was obtained through referral, unlike the previous one. She needs a doctor who can clearly ascertain and inform her of her health situation, and if necessary, get an MRI done so we’d know what is wrong. If she needs surgery, then we would consider the various alternatives.

It is easy to say that Pei Lee should be content being treated in GH, that is, until you become a patient there as well. There are a lot more than just seeing the doctor, which simply cannot be summarized in one day. I can list them out, but you can just as easily oppose my opinion. Some things are best learned through experience.

P/S: Ok… just one point. When I was being treated in GH, I had to insist and remind the doctor on many accounts, to look into my case and press him for an opinion, whatever concern it was at that time. I can tell you that Mr. Saffari, the head Neurosurgeon of GHKL is a humble man. But we need a doctor who speaks with certainty, and not one who dilly dallies. The doctors I’ve seen in GH do dilly dally, leaving you hanging in mid air. This is why Pei Lee is distressed. Because her legs are becoming weaker and she’s not benefiting from GH. She is left in the dark there.