“It started with tingling and numbness on the left side of my face and ringing in my ears. Gradually the pain got so bad I actually saw stars and couldn’t feel my legs. I hurt from my head to the bottom of my feet.”
“I blamed it on stress, working too hard, getting older, even my shoes. I love shoes and gave away all my pretty shoes for flats.”
Over a two year period Cynthia, a resident of Saint Lucia Island in the Caribbean went from doctor to doctor, going through all kinds of tests, when finally an MRI she had done in South Florida discovered the culprit, a tangled mass of blood vessels in her brain known as an AVM or Arteriovenous Malformation.
AVM affects less than 1-percent of the population. Most people are born with them but occasionally they form later in life.
Once diagnosed they can be treated by restoring normal blood flow to the brain. Left untreated they can cause bleeding, brain damage or stroke.
“When I first got the results it was scary because it’s like a balloon inside my brain that’s been growing for years and could burst any time.”
Cynthia’s doctor in St. Lucia recommended she stay in the U.S. and get treated right away but it wasn’t easy.
“It took weeks to get an appointment and when I finally did, one neurosurgeon, even though he had my MRI and knew what I had, wanted to run more tests costing close to 40-thousand dollars at my expense because I don’t have U.S. medical insurance.”
“Another doctor said there was nothing he could do for me and two others suggested watching and waiting, and if I get a brain bleed go to the emergency room.”
“Can you imagine, I could have had a brain bleed, ended up with brain damage or a massive stroke.”
In many cases AVM’s are treated with surgery to remove the mass or doctors use a technique called Embolization, which requires injecting a liquid adhesive into the AVM to try and block it off.
Cynthia didn’t like the risks that came with those options, including, infection, a brain bleed and stroke. She contacted Board Certified Neurosurgeon Dr. Mark Shaya with the Neurosurgical Institute of Florida. He specializes in CyberKnife Radiosurgery and recommended she go to the CyberKnife Center of Miami for treatment.
“Right away I went to CyberKnife Miami’s website, read all about how the CyberKnife works and read the patient success stories. I instinctively knew this was what I wanted to do.”
“Dr. Shaya said it was the best and easiest option for me with no down time and probably could be done with just one treatment. Plus he did everything for me. He called CyberKnife Miami, set up the appointment and even offered to help me set up a payment plan since I don’t have insurance.”
Using image-guidance and computer controlled robotics, the CyberKnife used the most precise high dose radiation delivering beams from hundreds of direction to the AVM gradually shrinking it and reducing the long term risk of brain bleeding and stroke.
“The staff at CyberKnife Miami is so welcoming. They make you feel relaxed, not scared. You don’t feel like you are having a medical treatment. I actually enjoyed being there.”
Cynthia also met Board Certified Radiation Oncologist, Dr. David Huang at CyberKnife Miami, who worked with Dr. Shaya and the medical physicists, to map out her treatment plan.
Dr. Huang says, “Most patients respond very well to CyberKnife treatments yet a lot of AVM’s are still treated with brain surgery, which is more risky and costly. But that’s changing as more doctors learn about CyberKnife and patients are asking for it. I believe it will become the standard treatment for most AVM’S.”
Dr. Huang adds, “Cynthia’s AVM was big and deep in the brain, in an area that controls vision and movement. It would be difficult to remove it without causing some damage. CyberKnife Radiation Therapy doesn’t cause any harm, there’s no risk of infection and can shrink the AVM, so that it is no longer a threat.”
Nothing is required of patients during treatment. Come dressed comfortably, bring music to listen to and relax.
“The treatment took about an hour and I didn’t feel a thing. I almost fell asleep on the table while the CyberKnife did its work. When I got off the table, it was
like nothing happened. It didn’t interrupt my life in any way.”
Dr. Shaya says, “Cynthia did phenomenally well and her symptoms resolved within a week. We are checking MRIs of the brain every 6 months as her AVM is slowly disappearing. The risk of this AVM bleeding spontaneously is decreased significantly as well.”
“Her prognosis is excellent, says Dr. Huang. There’s an 80-percent or better chance she’ll have no problems and if she does we can retreat the AVM with CyberKnife again, but I doubt that’ll be necessary.”
Cynthia says, “Everything has improved. I have no more facial or foot pain or ringing in my ears. I do everything I did before.”
The 58-year-old retiree plans on traveling and spending more time with family and grandkids. When deciding on treatment options she says, “Do your research. Don’t just do what the first doctors tell you to do. Get a second or even third opinion. With CyberKnife there’s nothing to be afraid of. It allows you to go about your work and daily life as though nothing happened.”
“I just wish I had all my pretty shoes back because now I can wear them again.” (She Laughs)