Thursday, August 14, 2008

Tumors and CyberKnife

   Blog late ... but worth the wait.
   During the last several weeks, I plunged into my freelance work and also gathered information from my friend, Carol Ring, about her extensive experience with CyberKnife for three brain tumors.
Carol has been free with her time, e-mailing me all sorts of information about the high tech radiation as well as her own experiences "under the knife."
   In January 2006, Carol's hearing was normal. The 60-something educator and amateur musician was living in Kuala Lampur in Malaysia, the Southeast Asian country where she had been teaching since the mid-1990s.
   By March of that year, her hearing had deteriorated so dramatically she needed hearing aids in both ears. 
   But something else was wrong. Shortly after receiving the hearing instruments, while on a trip to Bolivia, Carol began hearing "words and sentences that were completely garbled," she said.
   Back in Kuala Lampur, an MRI led to a disheartening, in fact grave, diagnosis. 
   Carol learned she had tumors in the auditory portion of her brain where sound is received.
   A roundabout series of appointments led her to Wijaya International Medical Center in Malaysia where Dr. David Martin had arrived recently with a CyberKnife Robotic Radiosurgery System (
   Martin also told Carol she was suffering from Neurofibromatosis Type II (NF2).  Carol explained NF2 as a "disease of the nervous system in which tumors can grow any time in any nerve of the body." That diagnosis came on a Friday.
   By Monday, she was under the CyberKnife. It was either that or traditional brain surgery.
   Her first treatment would be one of many cybersurgeries. 
   "There was a specific amount of treatment for each tumor," she said. "Each of two tumors had three consecutive treatments. My third tumor had two consecutive treatments." Although she began the series of cybersurgeries in Malaysia, she had to leave the country where she had been living in for close to 10 years.
   Now back in the United States and on disability from her teaching position due to her serious auditory problems, Carol has undergone a total of eight CyberKnife treatments, most recently at Stanford University Medical Center, the same facility in which Patrick Swayze was treated for pancreatic cancer, also with the CyberKnife. 
  So then, what is the CyberKnife?
  In short, it is a non invasive high powered radiation treatment administered by a robot that, with ultra-advanced imaging technology, can reach more locations than other forms of radiation and requires less patient discomfort during the procedure than other forms of radiation.
  Carol described her most recent CyberKnife procedure for this blog.
   For starters, she walked into the "operating room" in her street clothes.
   "Preparation for a CyberKnife treatment included having MRI and CT scans. After those, I was on the table, on my back, and the staff place a warm set fishnet cloth over my face. I stayed on the table until it dried. The purpose of the mask is to keep my face in a solid position so the radiation goes to specific spots inside my head," she wrote.
   With the mask dried and secured, the music (Carol's choice at Stanford) began and Carol held a button to push if she needed to stop the procedure.
   "I finally got the courage to keep my eyes open during my last (eighth) treatment." 
    "I saw the small hole of the robot above my nose. I couldn't see the radiation. I kept thinking 'You can zap my brain but you can't zap my nose.'"
  The robot moved around, indeed zapping various spots in Carol's brain.
  "My CyberKnife treatments varied between 45 minutes to an hour after which the mask was removed, I got up and walked away."
   Today, Carol's tumors are dying, a direct outcome of the CyberKnife procedures. She does hear noises and at times senses "a shimmery feeling bouncing off the tumors" as well as an electrical sensation in her head. Doctors cannot pinpoint the reason for those symptoms.  
   Still she's hopefully on her way to recovery and knows the tumors will take about 10 years to die. What happens during that time and after is anyone's guess. She could get more tumors or she could be tumor-free.
  NF2 is a tricky disease that still baffles the medical world in many ways.
  Carol is unabashed in her support of the CyberKnife but is angry as many physicians disregard the success of the robotic radiation procedure, especially those who have no experience with it. This disturbs her since a physician's opinion both opens and closes doors to treatment options for patients.
  In many cases, the CyberKnife can replace traditional surgery on the brain or any part of the body. It is FDA approved.
   While the CyberKnife sounds like it jumped out of Star Trek's sick bay, Carol notes, "CyberKnife is not totally risk free." In her case, there remains a 1 to 2 percent chance of serious side effects which could occur as long as 18 months after the final treatment. 
   "I had to sign a paper that I was aware of this possibility. I am assuming I won't be in this unfortunate group," she quipped.
   We certainly hope not. 
  Anyone who wants to know more about Carol's experience with CyberKnife, as well as tap into her vast knowledge of NF2 and CyberKnife, can e-mail me at I will forward any e-mails to Carol and you will hear from her.
   Next blog ... Navy SEALs, Yellow Brick Road, the Wicked Witch's flying monkeys and more.


A-muse said...

Hi Myra,

As a comment on the Cyber Knife, I was very happy that I had learned about it earlier this year so that I could recommend it (or at least a consultation to see if it were indicated) to a relative who had a cancer recurrence. I can tell you that I had a lot of resistance from her other physicians who were either ignorant of the treatment or didn’t want it to encroach on their domain. The treatment was very well tolerated and as of this point, the patient in question has no evidence of disease (as we say in the doctor biz). Of course, nobody knows what the future will hold.

She got her treatment at Christ Hospital. I believe that in Illinois there are two other Cyber Knifes. One is at Northwest Community Hospital in Arlington Heights and the other downstate (Peoria? Normal?). Readers should also remember that the Cyber Knife is different from the Gamma Knife which is much more widely available.

The other take-home message from your friend’s experience is to get an evaluation from an otolaryngologist (“Ear, Nose and Throat” doc—but if you put it in Greek or Latin we feel more special) for any sudden hearing loss. Sad to say, we see many that are misdiagnosed for months as “allergies” or “fluid.” And it’s sometimes tough to have to say to a patient, “we might have been able to do something about your hearing if we could have seem you in the first week or two.” Tumors causing hearing loss are rare, but I’ve diagnosed about 10 of them in the last 15 years. Fortunately, they are usually benign and slow growing--but in a lousy spot. They are somewhat related to neurofibromatosis II, but that’s even rarer (and familial).

One final point is that getting any type of RT (radiation therapy) is not the same as sucking on a popsicle (note to self:-do they still make banana popsicles—must check this today). RT can cause cancers or even convert benign tumors into malignant ones. So get info on all the options.

Chuck Amenta

g said...

Posts: 3

Greetings from New Zealand.

I'm writing to see whether you know of specific cyberknife success's in killing off maxopapillary ependymoma's. Research I undertook last year regarding this led me to one key paper which showed only two tumours of this kind had been treated thus far at Stanford, and so my doctors were understandably reluctant to let me go there, stating that because of the tumours location (in amongst spinal nerves), stereostatic surgery would be just a dangerous as further neurosurgery, with any mistakes made during time of treatment unlikely to show up until 2 years or more later, as the radiation effects were realised fully.

Anyway, I'm hopeful there's been further confirmation since, that this treatment would solve my current challenge permanently, as I've spent 20 years now with varying degrees of pain and reduced mobility, and feel like I've tried nearly every treatment available, both conventional and non, with supposedly maximum lifetime doses of radiotherapy etc. The tumour I have is squashed in amongst the cauda equina from L3-L5 extending down the S1 foramen....

I look forward to your response and wish you all the best meanwhile,


G (age 35)


photo by sarah gross

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Tinley Park, Illinois
As a longtime newspaperwoman who left the business to freelance, I want to keep in touch with the world. This is my place to reach out with words.