I Changed My Mind: Gamma Knife Surgery
for Treatment-Resistant OCD
By Gerry Radano, LMSW
At the age of five I knew exactly what I wanted to be when I grew up: a stewardess/flight attendant. Since I had always been strong willed and extremely determined, I held fast to that goal and at the age of 20 brought it to fruition. In addition to flying, I was just getting started as a real estate entrepreneur when I met my future husband Michael, an aspiring accountant. We seemed to have it all: a home in an affluent community, a thriving real estate business, we were financially very well off, had a busy social life, traveled extensively, we had a beautiful little girl and another baby on the way. Suffice it to say, we were living the American Dream.
However, during my second pregnancy our whirlwind storybook life suddenly was no longer looking at happily-ever-after. With my mother dying of cancer and my hormones raging, overnight I had gone from a force to be reckoned with to simply a wreck. I had somehow become obsessed with germs and contamination issues. I was terrified of just about everything in my life I came in contact with, including my husband and my child. I spent every waking moment washing, showering, spraying Lysol, changing my “contaminated” clothes, and suffering from panic attacks while crying over the devastation taking place, which I felt powerless to stop. I had developed a case of Obsessive Compulsive Disorder (OCD) tantamount to that of Howard Hughes in the film The Aviator.
After my son’s birth, I became a veritable recluse. Despite a myriad of medications, countless therapist visits, hours of cognitive behavior therapy sessions, and 3 psychiatric hospitals, I was unable to function. I was told by numerous psychiatrists that I was incurable. After 10 years of battling with this invisible mental monster, I had lost everything that meant anything to me including my friends, relatives, career, my husband, and almost my children.
The one thing I never lost was my hope/belief that I would one day recover from this endless ocean of madness. And so I continued obsessively to pray each day that God would give me back my brain and my life. By chance, or what I call Divine Intervention, I found out about an experimental non-invasive brain surgery known as Gamma Knife (GK). The good thing about GK is that the prognosis for this procedure is remarkable: 50% very much improved, 30% moderately improved, and 20% slightly improved, or showed no improvement. On the bad side, however, at that time GK was only available at two places in the world, Rhode Island and Sweden, it cost $30,000 (not covered by insurance), and you had to be approved by a fastidious review board in order to be considered for it.
Despite these caveats, a year-and-a-half later through much self-advocacy and the grace of God I was approved to have this rare procedure. I became the 32nd person in the US to receive GK. I was also the first person, again through obsessive perseverance and self-advocacy, to have it paid for by an insurance company. Miraculously, I was able to make a full recovery and take back my life.
A thumb-nail description of how the GK works is: Neurosurgeons use the Gamma Knife Machine to make 4-mm lesions. This is done by focusing 201 thin beams of cobalt-60, which emit gamma rays, at a target in the patient’s brain. The target for OCD is two small groups of nerve fibers deep in the brain called the anterior capsule. These fibers connect areas of the brain that are thought to be involved in causing OCD. When these beams are focused, it allows the neurosurgeon to target an extremely small area in the brain and lesion/damage it without affecting surrounding nervous tissue. It is this concentration of radiation that damages the tissue and forms a lesion, which can take anywhere from 3 months to a year to develop. These lesions are assumed to block the activity from the areas of the brain that are thought to be involved in causing OCD.
I had the GK surgery on November 10, 1999, a day I now celebrate as my new birthday, or as I like to call it my Brain-Birthday! Besides the birth of my two children, GK was the best thing that ever happened to my life. But my journey back to sanity and humanity did not take place overnight. For me, it took about 8 months for the lesions to develop and 4 long years after that to bring about this transformation, which I still look upon as a work in progress. Essentially GK gives people suffering from treatment resistant OCD the ability to “lower the volume” and begin to utilize the cognitive behavior and other therapies necessary to function again, or begin to take back their lives.
Since my life at that point had been completely ravaged by OCD and I had lost everything/body that had meant anything to me, I had to start over from ground zero. Basically what I did was put together a plan, which I simplistically entitled my “Take Back Your Life Plan,” and started writing down all the things I would have to do to bring this plan to fruition. These goals included: going back to school, doing volunteer work, getting a job, putting my ravaged house back together, losing weight (I had gained over 100 pounds from my medication), and most importantly reconnecting with all the people I had lost in my life at the merciless hands of OCD. Inspired by this motivational plan, I summoned up all the courage I could muster, put into play all the cognitive behavior therapy I had learned, and said a lot of prayers to find the grace to go forward.
And that is just what happened – I went forward. One by one, I was able to accomplish every goal on my very full plate and essentially put my life back together. As I said, it did not happen overnight, but literally took years of hard work and determination to reassemble all the pieces of my ravaged existence. Today, I have a very happy, stable and productive life. I was able to accomplish every goal on my list, including going back to school and earning a Masters Degree in social work. But without a doubt, my best accomplishment so far has been that of putting my marriage and family back together.
The first GK surgery for OCD in the US was performed over 15 years ago in the 1990s. Since that time only a handful - roughly 60 people - have had this procedure. While GK for OCD is still experimental, it is anticipated/hoped that the data for this research will be made public in the not too distant future and subsequently approved by the FDA. That being said, if it is approved, it will still take quite some time, probably years, before GK will achieve the level of being readily available to all those who need or want it, with health insurance companies being made responsible to cover the cost. I had my surgery done at Butler Hospital in conjunction with Providence, RI Hospital, which has been the main venue for this surgery in the US. It is also being done in South America and Sweden. Besides OCD, Gamma Knife is now being used for Epilepsy, Parkinson’s, Depression, and Brain Tumors.
Today there are so many more available treatments, therapies, clinical procedures, medications, and research being done in the field of OCD than there was when I was first knocked down by OCD almost 20 years ago. While GK still remains experimental and difficult at best to get, it is a good thing that a scientific technology like GK does exist for those 10-15% who are treatment resistant to OCD. I look forward to the day when everyone who needs or wants GK will be able to receive it. I am optimistic that with the recent transition in our government, research and technology will go forward even faster and all chemical brain disorders will in our lifetime go the way of Polio. At the end of the day, my ultimate hope is that the words “mental illness” and “OCD” will someday be eradicated to the point of being a distant memory or merely just a footnote in future medical journals and DSMs.
Gerry Radano was one of a handful of people chosen to receive Gamma Knife, a very rare experimental brain surgery for OCD, that enabled her to make a miraculous recovery. She wrote a book, Contaminated, My Journey Out of Obsessive Compulsive Disorder, to raise awareness of this neurological brain operation that gave her back her life. If anyone would like more information on Gamma Knife, you can go to www.freeofocd.com or contact the writer at firstname.lastname@example.org.
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