Yvonne Foong

Dear readers. I apologize for not being able to post updates here the past week. I arrived at the National Institutes of Health in Bethesda on Tuesday morning via United Airlines. The first thing I did upon arrival was to check-in to the Children’s Inn within the NIH campus. But the previous occupant of my room had yet to check out (it was before the check out time) so I kept my luggages in one of the offices and ate breakfast upstairs. As soon as I was done eating, a volunteer holding a walkie-talkie came up to inform me that staffs from the Neuro Clinic had just called the Inn asking for me. They wanted me at the Admissions Office where Frances, the CART Interpreter was already waiting. I was to be admitted immediately upon arrival so that I could be on call for in-patient MRI as there was no more available outpatient slots for my brain MRI.

So there, I spent Tuesday, Wednesday, Thursday and Friday at the Clinical Center. They found my kidney enzymes elevated which might explain the urinary incontinence that I had been experiencing the past two weeks. At first, they suspected Hepatitis, but that was later ruled out with further blood and urine tests. They eventually attributed the possible cause to the antibiotics prescribed by my general physician which I took some three weeks ago. On top of that, there are two tumors located at my lumbar spine which has grown a little. These tumors can also cause bladder and bowel problems. Since there were multiple possible causes to the same problem, we needed to get rid of the kidney infection and see whether my bladder and bowel problems persist in order to know whether these lumbar spine tumors needed to be removed at this point. I was prescribed with Cipro twice a day with a 12-hour interval and my kidney enzyme level monitored with daily blood tests.

Moving up, a tumor at my thoracic spinal cord – the same location where tumors were removed in 2002 – has grown a little. The amount of compression that this tumor is causing should already be affecting my legs’ strength. But when Dr. A tested my legs, he found that they were pretty strong except for slight weakness in my right foot. This is probably because of the previous laminectomy which decompressed the cord during that surgery. That might have created extra space for the current tumor to grow before it compresses the cord enough to weaken my legs. To monitor this tumor, I will need to pay extra close attention to any changes in my knee and ankle strength.

Moving up still, there is a tumor at my cervical spinal cord that has also grown a little. This tumor will affect my arms’ strength. But I hadn’t noticed any new weakness in my arms yet. Then again, I don’t have to do much heavy lifting save for the Heart4Hope stocks that I need to carry – but not for long. I always get someone else to carry things for me to avoid straining my spine.

There are actually two spinel cord tumors of mine that can cause leg weaknesses. Were they the thoracic and lumbar tumors? Or were they the cervical and lumbar? Before surgery to remove any one of these tumors can be decided, we need to ascertain which tumor is the cause of any new weakness in my legs that I might experience in the days to come. We will do that by observing their growth in the next months and my bowel/bladder condition after eliminating the kidney infection with Cipro.

Finally, Dr. A is in the opinion that the head pressure/headache that I have been feeling is an effect of my vision disturbance. I have been complaining about changes in my vision which has become blurry and hard for me to see. It is like how people get headaches from wearing unsuitable spectacle lens. But when the neuro-ophthalmologist here tested my eyes using visual field tests and other exams, he found my visual acuity actually improved since October 2011. So I emphasized to Dr. A how I could not see well enough to even identify the Medical Center metro station when the shuttle dropped me off. He then said that he understands some vision problems do not show up in eye exams. The orbital MRI showed that the tumor on my right optic nerve has grown by 1mm. This was the tumor killed with Gamma Knife radiosurgery in 2009. The vision disturbance that I am experiencing now might be the delayed effects on the optic nerve from that radiation treatment. Now this is where Dr. A feels we are stuck because any more surgery on this optic nerve tumor will blind my eye.

As for previous suspicions by doctors back home, NIH did not find any signs of hydrocephalus or shunt malfunction – which would have been easy to treat compared to the present ambiguity. Dr. A also does not think that any tumors in my ventricular system is the cause of my head pressure and strongly advise against surgery on them. Dr. Lekovic in Los Angeles is also in the same opinion about the ventricular tumors.

I am now in the process of arranging to visit Dr. Scott Plotkins at Massachusetts General Hospital’s NF2 clinic for a second opinion.

Wow. My previous post was dated 6th February. I knew that I hadn’t been blogging for some time but did not actually check the date until now.

My condition has deteriorated. But like how it was since December, my discomforts were not evident outwardly. People say that I look very good and happy. I’d attribute that to my daily facial regimen and being in love.

Anyway, since the local neurosurgeon I consulted was sure as hell he could tell which brain tumor was causing my decline merely through the CT scans while my US neurosurgeons insisted that they could not, I thought of seeking a second opinion from NF specialists at Harvard. But preparing to see Harvard doctors took up too much time and my condition declined in the process.

I started to experience an increase in head pressure sometime around Valentines’ Day, followed by a feverish sensation and diarrhea. Following these developments, I went to see my family doctor who is a general practitioner in a neighboring city. He prescribed me medications – first for fever and pain, then for diarrhea and wind. When these finished, I went to see him again. The diarrhea was gone, but the headache and feverish sensation persisted so he gave me medicine for fever and pain as well as antibiotics. But when even these finished, the headache and pressure persisted so I went to see the same neurosurgeon whose opinion did not change – he still thought that tumors in my ventricular system were the culprits.

When I came home from hospital that day, I sent an email to the team at the U.S. National Institutes of Health informing them of my decline and requested to be seen sooner than we had originally planned. So this Monday, my companion and I will be flying off to L.A. and then take a connecting flight to Washington Dulles before riding to the NIH campus in Bethesda, Maryland.

I will have late night MRI appointments between next Monday and Wednesday. Night because they are squeezing me into their already-planned schedule. We will be doing a full brain MRI assessing for hydrocephalus, an MRI of the orbit assessing for intra-cranial tumors that might explain my vision disturbance, and an MRI of the spine assessing for the cause of urinary incontinence. I will also be seeing a neuro-ophthalmologist at the NIH because Dr. Kiew Chit Chua of Assunta Hospital found that 90% of my right optic nerve fibers have been destroyed when I saw him hoping that we could see whether there was hydrocephalus through my eyes. But he couldn’t, due to the condition of my optic nerves.

Hopefully, we will be able to pinpoint the cause of my decline and treatments can be carried out at the NIH.

Au revoir mon ami!

P/S: More often than not, we can only know what’s happening when our condition has developed to a certain degree of severity.

I have been making arrangements to consult doctors and possibly undergo medical examinations as well as treatments at the NF2 Clinic at Massachusetts General Hospital-Harvard Medical School. The process involved registering me as an MGH patient, registering with the International Patient Office, providing them with my personal information and medical records and arranging for my medical reports from House Clinic and the U.S. National Institutes of Health to be sent to MGH before I could set up appointments to see the doctors at Harvard.

The preparatory procedures may be lengthy and time-consuming, but from my experience with U.S. medical institutions, this will prove to be worth the while.

House Clinic, House Research Institute in Los Angeles has records of my medical treatments from 2004 to 2010, while the U.S. National Institutes of Health in Bethesda has some extensive medical reports between October 2010 and October 2011. When MGH physicians receive all my medical records, they are likely to vet them through and through. That’s how U.S. doctors work, or at least those that I choose to see.

So far, I haven’t met a local doctor who is prepared to do that. Or maybe they are simply not trained to appreciate a patient’s medical history. I don’t know…

Upon my request, HEI doctors are now in the process of refering me to Harvard Medical School’s NF2 Clinic in Boston, Massachusetts for a second opinion. Dr. Adelyne, who is Dr. Lekovic’s assistant, is contacting the nurse at Harvard to schedule a February appointment for me.

I figured that Mom will not be too happy if I make her travel during the Chinese New Year season, so that was why I decided to visit Harvard in February and not sooner.

For your information, the NF2 gene was first cloned at Harvard University. They have an NF2 clinic wholly dedicated to Neurofibromatosis Type 2 diagnosis, treatment and research. Their team, made up of doctors across various medical disciplines, is specialized in NF2.

I have been eyeing the NF2 clinic at Harvard for a couple of years but found no reason to visit it since I could be treated at HEI and NIH previously. But now that even doctors at HEI and NIH could not find the cause of my deterioration, I have a good enough reason to visit Harvard.

Dr. Lekovic had repeatedly suggest that I should see an Opthalmologist for my vision changes. But from my last visit with the Opthalmologist at NIH in October 2011, my vision was found to have improved since October 2010. It’s now 20/50 as compared to 20/100 or something like that previously. My vision disturbance is not testable using standard eye exams. Hence, I believe it is not due to my eye per se.

But trying to visit this and that opthalmologist all over the places can be draining and frustrating, especially if they have only basic understanding of NF2. And then, I might also require the attention of specialists in other medical disciplines which would mean I have to go to other doctors all over the places, explain to them my medical history all over again and try to consolidate everyone’s findings.

To avoid all that headache, I decided it is best to visit the NF2 Clinic at Harvard Medical School – Massachusetts General Hospital.

Say, is anyone reading this residing in Boston, Massachusetts? It will be very helpful to have someone familiar with the area as our host and guide.

I have not been jotting down every small turns in my quest to find out the cause of my symptoms the past two weeks because everything is still tentative. I was waiting for my L.A. neurosurgeon to come back from his holiday before I sent him the CT scan report and point out the 1.4cm nodule at my right lateral ventricle to him.

Dr. Lekovic has now returned and replied my email. He says that the 1.4cm nodule has always been there but it is probably not a tumor since it does not enhance. Even if it were a tumor, it would not cause the symptoms as I have described them. From the look of my CT scan and MRI, there is no evidence of CSF obstruction from any cause.

Let me now ask Dr. Lekovic to personally refer me to other neurosurgeons for second opinions. He has done that for me before in 2009.

Meanwhile, Sin Chew Daily has managed to raise the RM70,000.00 which they aimed to raise for me. The money will be kept for me in trust by Sin Chew Foundation. Once I have decided on the course of treatment, Sin Chew Foundation will release the funds to me. To raise funds for me in advance is a very special favor from Sin Chew Daily and Sin Chew Foundation of which I am immensely grateful for.

As of 10th January 2012 which is today, the total funds raised is RM114,000.00. Concerned supporters have been asking whether the funds is enough so I’d like to explain how it works here.

At the beginning, I had thought that the neurosurgeon at Assunta meant my VP shunt was blocked and needed to be revised. Alarm bells in my head went off upon hearing that as VP shunt malfunction is an emergency. Without wasting any time, I proceeded to estimate how much a VP shunt surgery at House Clinic would cost based on my past experience, and I estimated RM100,000.00

With the help of my friends, I uploaded the CT scans from its CD and sent them to Dr. Lekovic at HEI and Dr. Asthagiri at NIH. Upon viewing those images, Dr. Lekovic said there was no evidence of VP shunt malfunction and the size of my lateral ventricles were normal.

The next day, I went back to see the neurosurgeon at Assunta to get clarification from him. I then learned that there was a miscommunication with this surgeon earlier. He explained that there is a set of tumors in my third ventricle. Their shape resemble Candle Wax tumors which are a kind of giant cell tumors. He said that they are partially obstructing the flow of CSF, not yet completely. He also highlighted a tumor at the right frontal portion of my brain which he thinks needs to be removed for it is also contributing to my symptoms.

After coming back from Assunta the second time, I related the neurosurgeon’s opinion to Dr. Lekovic. But he does not believe there are any tumors in my third ventricle either.

The cost of surgery depends on what the surgery involves. A tumor removal surgery will cost more than a VP shunt placement and revision surgery. Surgery in other U.S. private hospitals might cost more than HEI and St. Vincent Medical Center. But the important thing right now is not the cost of surgery. What’s important now is getting to the bottom of my sudden change in physical condition.

Many concerned members of the Malaysian public have been trying to do their part to help me by recommending various local neurosurgeons, both at public and private hospitals. I appreciate your concern and desire to help. However, I have consulted local neurosurgeons at public and private hospitals on my own before, and I have learned that many Malaysian neurosurgeons themselves do not appreciate it when NF patients go to them directly and out of a sudden. They have no experience in the patient’s case and not familiar with the patient’s medical history. It must be remembered that I have Neurofibromatosis Type 2 – an entire medical condition on it’s own and I have an elaborate medical history. The doctor must not only have some experience operating on NF2 patients, but he needs to be well learned about NF2 and it’s treatment. NF is actually not a rare condition. Every doctor has to study about it generally. But only a handful of doctors around the world are truly familiar with the natural history of NF.

To help you understand what I mean, let me use the Candle Wax tumor hypothesis as an example. A doctor familiar with NF2 will first ask whether NF patients can possibly develop giant cell tumors. It could also be a Schwannoma – a kind of tumor that is formed by the Schwann cells of the nerve’s myelin sheath – or it could be a meningioma – a tumor that is formed by cells of the brain’s meninges. All tumors have different characteristics and require different surgical treatment.

Using a wrong surgical approach for the wrong type of tumor can endanger the patient’s life too. That’s why it is so important to ascertain the condition before going into surgery.