There is a large magnetic artifact opposite the T1-T2 level. In the upper thoracic spine there are multiple what appear to be dural based foci causing prominent impingement upon the spinal cord. The largest of these measures approximately 7mm and is located opposite the inferior aspect of L4 just to the left of midline. Another dural enhancement is also present with a moderately large plaque of approximately 8mm present at the L5-6 level. A very large similar focus is present opposite the T8 vertebrae body and occupies left half of the spina canal. Below there is magnetic artifact from prior surgery. Laminectomy has also been performed at this level. There is only a small extraspinal component. The spinal cord opposite the T5-6 level on the T2-weighted sequences has extensive increased signal intensity within it. It is also in the field of prior surgery, Below the T8 level there is also a moderate sized lesion opposite the T10 level located in the canal dorsal to the right of midline. Along the comus there are multiple 1 to 5mm foci of enhancement studding the cord and most prominent just below the conus as well.

Impression:
Multiple areas of postoperative changes noted throughout the spinal cord with magnetic artifiacts in the upper cervical spine. Abnormal T2 area within the cord at the T5-6 level as described. There remain several large intraspinal canal masses, most notably at T8, T10, and T6 levels, though moderate sized masses are present as described throughout.

Yvonne Foong’s Thoracic Spine MRI report dated 15th May 2007. Dictated by Waluch Victor, St. Vincent Medical Center.

I found a message written by someone from St. Anthony Hospital. Have a look.

THere is no reason to think CK will be less effective than GK, and the data to date shows the same 95-98% control rates. He is wrong about the accuracy. GammaKnife has a mechanical accuracy of 0.3 mm. But that does not take into account the inaccuracies of MRI versus CT, the inaccuracy induced by the head positioning system, and the inaccuracy induced by frame torsion. The problem gets even worse with mechanically set head positioning. THe OVERALL accuracy of the CK is variously reported as 0.5-0.89 mm, with most showing closer to the 0.5 mm for intracranial targets. OVERALL accuracy of the GK is 1-2 mm, depending on a number of factors.

Our radiosurgery group has experience with hundreds of AN’s treated for 10 years on GK and for 4 years on CK. WE exclusively use the CK now.

Your choice, but I personally would go with CK. Either one is highly likely to control your tumor

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org or cmedbery@coxinet.net

Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave.
Oklahoma City, OK 73102

GK means Gamma Knife and CK means Cyberknife.

This patient’s query is regarding the Acoustic Neuroma without prior history of Neurofibromatosis.

See, good MRI scans are also very important. Or x-ray beams during radiasurgery will hit the wrong places!

Below is a message I wrote in an online bulletin board, addressing doctors at Stanford Hospital, California. The founder of this online forum is Dr. John Adler M.D. the inventor of the Cyberknife Radiiosurgery.

Hello there!

I am a young patient with Neurofirbromatosis Type 2 residing in Malaysia. I had a surgical tumor resection at my upper thoracic spine in 2002.

Before surgery, I could hardly walk and had to use the wheelchair. After surgery, I was temporarily immobilized chest down, but regained the use of my legs about 3 weeks after surgery. I believe that surgery caused some complications as the nerves along my right foot became tight, the leg is unable to bend well, and the foot is tilted after the surgery until now.

Recent MRIs showed tumors have grown back along my spinal cord, from cervical all the way to my lumbar spine. A surgeon said there are two recurrent tumors on the same site as the first spine surgery. He said another invasive surgery on the same site is very risky and suggested that I look into Cyberknife.

Two months ago, I started getting tired all over and needed to sleep a lot. At first we thought it was the lack of energy, and then we thought it was due to Neuromuscular problems. Now the tiredness has manifested into other symptoms.

Since three weeks ago, my hands and feet became numb, the skin all over my body produced a tingling sensation. At first my hands and feet felt ice cold. Next, they became numb. They are worsening gradually. Now the numbness in my left leg has reached to my knee. The areas that feel numb are no longer so sensitive when the doctor probed me with a sharp stick. (Sometimes, my legs feel as though they are barely there when i walk around college.)

I had fallen down twice now. The first time, I fell down because I “forgot” to prepare for the transfer of weight when getting off the car. It felt as though I “forgot” how to use my legs. I could not even break the fall, as though my brain “froze”.

The second time, I fell down when getting on the bus. Strangely, I did not lift my left leg high enough even though I should have known. The left leg is also the one that is feeling more numbness than the other.

Whenever I go off balance while walking, I tend to lean towards my right. Maybe that means I am losing use of my left leg gradually.

Sometimes, but rarely, I also feel as though my brain cannot control my right hand when trying to write in a sudden. The same feeling sometimes occur when I press the cellphone keypad.

My last MRI was in May 2007 with no previous spine scans for comparison. Doctor, do you think I should get an MRI done now? I’m not sure because an MRI too soon might not document much changes, but if I take too long, I am afraid radiosurgery would be less effective.

I am residing in Malaysia. We have the Cyberknife facility here. But I am concerned with getting an experienced surgeon to administer the treatment. Since I have a history of NF2 and prior same-site open tumor resection, I feel an experienced surgeon in similar cases like mine is important.

I sincerely hope to read your reply soon. I have my MRI scans and pathology reports with me. I am prepared to send them over for evaluation if it is necessary.

Pei Lee and her father came to collect her scans from me yesterday. Pei Lee dropped out of school when she was 12 years old and lack communication skills. Therefore, it is very hard to help her unless she can confidently tell us what is wrong with her. Pei Lee can’t even tell us the rate of her progression. Dr. Schwartz’s opinion on her case is the same as his opinion on mine. But until Pei Lee can tell us if she is experiencing progression, the decision for medical treatment is hard to make. If her symptoms are not progressing, then it is best Pei Lee leave her spine as it is, because every surgery, Cyberknife included, involve risks, and some risks are not worth taking if her symptoms aren’t progressive. This also stresses the importance of education.

Maybe she should adopt the wait-and-see approach from now on, begin observing herself from now on instead of digging into a forgotten history.

Cyberknife may have side-effects too. Read Rebecca’s account.

Here is a better explanation of what Cyberknife is, in case the previous study report is too confusing for you.

The Cybernnife single-fraction radiosurgery defers from earlier versions of radiosurgery. The Cyberknife is a lightweight LINAC machine mounted on a robotic arm that can be maneuvered up to six degrees in positioning. It is a frameless non-invasive treatment, unlike the first Stereotactic Radiosurgery method invented, which required a frame screwed onto patients.

The Cyberknife single-fraction SRS offers precision necessary in treating spinal tumors. Previous conventional radiotherapy were not useful in treating tumors using high doses of x-ray beams below the foramen magnum, as the spinal cord is extremely radiosensitive. With the precision that Cyberknife possess, large single doses can be targeted more accurately on spinal tumors, thus increasing radiobiological effects and reducing the risk of spinal cord injuries.

Real-time x-ray imaging of the patient’s treatment location is obtained concurrent with treatment session to accommodate changes in positioning.

In several cases documented by the University of Pittsburg Medical Center, the treatment plans were jointly devised by a team of neurosurgeons, radiation oncologists, and radiation physicists. “In each case, the treatment volume was defined as the radiographic tumor volume.”

“The tumor dose was determined based on the histological composition of the tumor, spinal canal and normal structure tolerance, and previous radiation quantity.”

Notes in BOLD are to show you why an experienced surgeon in my case is so important. Even with the right technology, things can go awfully wrong.

This is my interpretation of the full text. You may also read it here. CLICK.

In this report, all cases did NOT previously undergo open tumor resection. But I did, requiring laminectomy and there were complications. The recurrent tumors are located at the same site. That must go into consideration when choosing my administering physician.

Maybe I should send my MRI films to Dr. JR. Adler in California for evaluation. First, I need to get new films done. Actually, six months should be allowed between every MRI for NF patients, unless it is absolutely necessary. And I assume doing an MRI too soon might not document much changes. That’s why I haven’t done the MRI despite my numbness and weaknesses. When is the right time to go?

Yvonne must remember not to take too long as tumor size is extremely important for the benefit of radiosurgery.

I’m currently looking at Cyberknife radiosurgery to treat my spine tumors. I’m becoming more conscious of the weakness and numbness in college. Are the tumors growing larger? I don’t know for sure until we get an MRI done. Should I get an MRI now or later?

Anyway, here is a list of hospitals and clinics that have the Cyberknife technology. It is rather new, and insurance companies in the U.S.A are still deciding whether or not they should cover it. This doesn’t apply to me, of course.

The closest one is in Wijaya Medical Center, Petaling Jaya.

There are also centers in Japan, Korea, and China.

In the U.S. itself, there is one at Stanford Medical Center, California, where it was first invented by Dr. Adler.

In L.A., there is one at West Jefferson Medical Center.

USC Norris Cancer Center, in LA.

There is even one at Newport Diagnostic Center, at Newport Beach! Oo La La… Eddie, can you imagine what it is like being treated there?

Ok next thing to do, is to find doctors who have administered Cyberknife radiation on NF2 patients. That is, I have to ask them, one by one, if they have experience using Cyberknife on NF2 patients. This is very important because every tumor is made up of different tissues. Mine are meningiomas, arising from cells of the meninges. Cells in NF2 tumors have a defective DNA.The NF2 gene is located on Chromosome 22. Now every gene , located on different chromosomes and made up of different proteins, have different characteristics. We want a doctor who can say, “Yes, Cyberknife radiation can kill NF2 tumors despite the defective DNA. And the long-term result is positive, with a low chance of recurrence. I am sure of that and I have seen NF2 patients.”

That is very important. Otherwise, any radiation will do lah. Die also nevermind. Of course I don’t believe that any radiation will do. But some people out there tend to think so when they gave me baseless opinions on how my Acoustic Neuroma should be treated.

As far as I know, the administering physician in Wijaya is an Oncologist. But Neurosurgeons are the ones who should know NF better. And then, there is the consideration whether the neurosurgeon is experienced with NF patients, and how.

Voting for the AYA Most Outstanding Youth of The Year 2007 begins today!

CLICK HERE to cast your votes and view the video interviews.

Way to go, Poh Si!
Ciick here for Poh Si’s resume.

Tao Yuan Airport, Taiwan August 2007

Finally back home after bothering Eddie for one whole month. Each time I have to leave, i feel as though I’m leaving behind a dream. Being in Malaysia, my life in the U.S becomes surreal. I’d ask myself if Eddie really exists, if St. Vincent hospital is really there, if the places I’ve been were just a dream.

I’m glad to be home again. Healthcare aside, there are many chores to catch up with, and many friends to see again. I am going back to college today. Remembering the people I will meet in college is exciting. Being able to attend college on my own, walk on-campus on my own, hold a pen on my own, read a book on my own, makes life so beautiful. I want to use my hands as much as possible. Sometimes, my hands are hard to control and I’d remember to appreciate the times when I can.

I am very grateful for being able to travel alone. I remember the first time I sat up after a month-long paralysis. And the first time Mom fetched me home from the hospital. The first time I went back to school after surgery. The first time I ate solid food without vomiting. The first time I stood tall with two therapists holding me.

I am grateful for having so many first times in my life.

Now that I am home, the numbness in my hands become more obvious. L.A was chilly which made me wonder if the numbness was also due to the temperature. But at home, I am too familiar with the place to overlook abnormalities.

Before I left, I said to Eddie. “If my deterioration is similar to a friend’s condition, soon Ii might not be able to hold a pen, type on the keyboard or chat on MSN. I wonder how many friends I will lose then.”

Eddie said, “You will still have Eddie and Cordy”.

When I see beautiful things these days, I say a silent prayer, “Praise God for eyes.”

“Please don’t take them away”.

Don’t worry, Eddie. The flight attendants took good care of me. I insisted to be left alone at Tao Yuan airport. I prefer doing things on my own as much as possible. They came to me when it was time to board the plane, they helped me get off, helped me get my suitcase, sent me to my parents, offered me a good seat, and gave me special attention.

Being disabled still feels strange because I wasn’t born this way. One minute, I am grateful for getting the help i badly need. Then, I’d try my best convincing people that I am able on my own.

Maybe it’s my way of accepting fate.

Maybe I should be grateful and not ask for too much when God has given me an additional 5 years of being able to walk on my own. The spine surgery in 2002 was a near miss. I should be content.

The beautiful legs that brought me to the AllHeart.com warehouse at downtown L.A. Okay, it’s not really downtown. It’s nearer to the coast, in west L.A. after Beverly Hills.

The store sells nursing uniforms and medical supplies, such as Scrubs, lab coats, clogs, stethoscopes, leggings, and so on.

I bought two pairs of compression holstery to wear under my pyjamas at night.

For a 4 feet 11 under 50kg, I bought A size which is the smallest possible with this brand.

It’s worn like the usual stocking, except that the compression holstery is tight, meant to promote blood circulation and prevent bloodclot and muscle cramps.

I learned this from wearing them at St. Vincent Medical Center after every surgery. Do Malaysian hospitals let patients wear this? I know GHKL doesn’t.

Look at the right leg complications caused by my first spine surgery. Like I’ve been saying, my hands and feet are numb since three weeks ago. The numbness is more obvious in my sleep. Sometimes, I fear dying from deep vein thrombosis. So that’s why I decided to buy the compression holstery. The numbness in my hands increase when bathe in warm water.

If you are inactive or have numb legs like me, give the compression holstery a try.

In the past one and a half years, many reading my stories have praised me as courageous and strong. E-mails with words of encouragement and praise greeted me almost everyday. Gradually, their words shaped me and I no longer remember who I used to be. Sadness was no longer in my dictionary. Every morning, I woke up to a hopeful day, looking forward to my duty as a public figure. Raising funds last year saw Yvonne in her toughest demeanour possible. But only on the surface. Deep down insecurity grew and grew. The slightest detraction on my blog sent me panicking. I relied on John and Cordy for assurance whenever I felt threatened. That was the price of fame, which so many people envy, but really, it did not come easy. Besides raising funds, I put in a lot of energy dealing with the pressure of meeting public demand and expectations. Being famous means pleasing the world, which may affect a person’s mental wellbeing tremendously.

Now, I’m beginning to rediscover my innerself. No longer the nineteen-year-old teenager, I am more certain about who I am and who I want to be. Then, another problem sets in.

I am beginning to remember the Yvonne before she became famous. To quote ex-NST journalist, Jessica Lim, “Like horror movie in slow motion.”

Eddie fetched me to the train station this morning. Just as we did in the past several weeks, he stopped at the station entrance where I got off. I put both legs on the pavement and stood up in reflex. Time ceased the moment, and I fell down. It happened so slowly, and yet so quickly. When I got up, I recalled the process of falling down and realised that I did not command my legs to prepare for the transfer of weight. The moment I knew I was going to fall, my mind ceased further in a daze, “I ammmm goinggggg tttto faalllll…” and then I was on the ground. I did not know how to break the fall. That’s why in the movie, Aya Kito fell head first. My falling down is similar to hers.

In L.A., I rode the bus to a shop selling medical supplies. It was sunny and I was slightly aggitated from waiting for the bus. When it finally came, I stepped up, looking forward to speaking with the driver. Just then, I fell forward, spilling the contents of my plastic bag and hurting my knee. This time, I did not raise my left foot high enough even though I was already half way on the bus, when I should have estimated the height of each step. The foot that I did not raise high enough is the one that is becoming less sensitive than the other right now. I remember this was the earliest symptom of spinal cord compression eight years ago. I simply cannot estimate distance and command my legs accordingly. Then I remember Aya Kito. In the movie, she fell for the same reason, for making wrong estimations and then movingly incorrectly, leading to painful falls.

Later in the evening, Eddie with his buddies, Stuart and David, picked me up at the train station for dinner. I grinned and laughed seeing them joke among each other. I felt their warmth and I was happy too. Just then, my eyesight flickered, from bright to dim, then bright again. My smile broke, remembering the tumor compressing my optic nerve. This flickering symptom has been around for more than a year. Sometimes it completely flicks off my vision for only a second, then I can see again. I’d ask my mom if something is wrong with the lights. When she said no, I realised it is the tumor behind my eye. But I never remember these things when doctors ask about my progress.

John said this is what makes him sad. Because my condition is so bad, that I’ve accepted it as part of my daily life. But what else can I do? Surgery is risky and costly. Nerves cannot regenerate. I can only hope for miracles to happen, to slow the process of degeneration.

In a way, I have to thank my illness as well. Otherwise, I would have remained the same insecure airhead teenager. Raising funds last year taught me about insecurities and superficial pursuits. Perhaps, Yvonne dealing with NF hands on makes who she really is inside. Just as a writer is best kept locked indoors with a pen and paper. A fervent writer does not feel belonged anywhere else.