Mary,
another Postie who had CK with Dr. Kresel who you might want to chat with is named Suzanne. She goes by "shoegirl" on this forum and while I haven't seen her post in a long time I'm sure you could send her a PM. She is actually now a patient story on the Accuray web site
http://www.accuray.com/uploadedFiles/Suzanne_Patient_Story.pdfFor those who have been here for awhile and remember her, I'll try to paste her story and picture, hopefully she won't mind
Well, The picture won't copy so you'll have to follow the link for that
Mark
Suzanne’s Story – Brain Tumor
For 34-year-old Suzanne, nothing is more important than being the best mother possible to her young children. But in the fall of 2005, a discovery during a routine brain scan threatened to hinder the Phoenix, Ariz., mom’s ability to care for her children.
Several years before, doctors had discovered that Suzanne had a pineal cyst, a benign lesion in her brain that was causing no adverse symptoms. To ensure that the cyst did not grow or change, Suzanne had regular brain scans. However, as she was going in for an MRI in October 2005, Suzanne had a feeling that something was wrong, even though she was not experiencing any specific problems. She was right – the scan showed a growth in her brain, but it wasn’t the pineal cyst.
Suzanne had an acoustic neuroma, a typically slow-growing benign tumor that can cause hearing loss, facial numbness and/or paralysis and effect ones balance. “I was happy to know that it wasn’t cancer,� Suzanne said. “But when my doctor told me that the most common treatment was microsurgery, all I could think about was my kids – who were then three and one – and how their lives would be affected by my long recovery and the possibility that something could go permanently wrong.�
During the week between her diagnosis and the first appointment with a specialist, Suzanne spent many hours online learning more about acoustic neuromas. “I became more and more anxious,� she said. “I went from just wanting [the tumor] out of my head, to being terrified about having surgery.�
She knew that recovery from surgery could take several months, and that most likely she would lose hearing in her left ear. And there was great risk that she would have permanent facial paralysis and balance issues. “I wasn’t willing to take those risks because my children would have had to deal with a different mom,� she added.
As she began researching potential treatment options, she discovered that radiation was a possible alternative and that a new technology – the Accuray CyberKnife® Robotic Radiosurgery System – was being used to treat brain tumors. When Suzanne visited the neurologist, he said that she was a candidate for either radiation or surgery and referred her to a radiation oncologist. When Suzanne met with the first radiation oncologist a week later, he could offer her no information on the CyberKnife System. “He could only talk to me about the technology he had, and that I would have to undergo weeks of radiation treatment,� Suzanne said. “I was disappointed because when it came to the radiation treatment, I wanted the most accurate treatment available, so the cells surrounding the tumor wouldn’t be harmed.�
In the meantime, Suzanne sought more information from patients undergoing CyberKnife treatments for acoustic neuromas through the internet and patient support group website. And she learned that there was one in use in her hometown at St. Joseph’s Hospital’s Barrow Neurological Institute (BNI). “I knew I wanted the best technology out there,� she said. “When I came across CyberKnife one of the things I liked the most was that it’s noninvasive, it has amazing accuracy and it would be something that wouldn’t have an impact on my quality of life.�
She made an appointment with Dr. John J. Kresl, a radiation oncologist, and his team who were using the CyberKnife System and other radiosurgery systems at BNI. They all agreed with her decision in that the CyberKnife System was the best course of treatment for Suzanne.
By the time she began her CyberKnife treatments a month later, Suzanne knew exactly what to expect. Suzanne was impressed that Dr. Kresl’s team showed her the CyberKnife System and the computers that run it. They explained in great detail how it worked – that it detects the slightest motion of the patient or tumor and would readjust immediately so it could continue targeting the tumor with extreme accuracy. And they made sure she knew what to expect during her treatment sessions.
Prior to her treatment, Suzanne contacted the CyberKnife Patient Support Group, a community of patients who have been treated by the CyberKnife® System. “I was able to ask them detailed questions, such as how they felt afterward, and even something as silly as what to wear to my treatment,� Suzanne said. “There was a woman from Australia undergoing the treatment at Stanford during that time, and through the support group, I was able to follow her progress every day and discuss with her how she was feeling. It really prepared me.�
On a Friday in mid-December 2005, Suzanne had a CT scan and MRI to help doctors pinpoint the location of her tumor and plan her course of treatment. The next Monday she went in for the first treatment, which lasted one-and-a-half hours. She had two more treatments, lasting an hour each, on Tuesday and Wednesday.
Though she was a little tired after each treatment, she was still able to go home each day and interact with her children as usual. “I didn’t feel a thing,� Suzanne recalled. “You almost wonder if it’s really doing anything because it’s completely painless.�
But, in fact, the CyberKnife treatment was doing its job. In September 2006, her nine-month check-up showed signs that the tumor was dying. And, thankfully, Suzanne said, she has had none of the complications that are common when patients undergo microsurgery. She didn’t lose her hearing, her balance remains the same and she has no facial paralysis.
“The entire CyberKnife journey was very easy,� Suzanne said. “My quality of life never changed, and for me, that was a big deal because I didn’t want my children’s lives to be different. There are others I know, who have had the same type of tumor and opted for microsurgery. But they have had completely different outcomes, and every day is hard for them. I feel almost guilty that the whole process has been so easy for me.�
Suzanne added that she now knows she can not take anything for granted. “You just never know when your life may change. I had no reason to believe that anything was wrong with me,� she said. “Now I try to make the most out of my time with my family and my kids.�
