Purple with a Purpose - A Non-profit Patient to Patient Advocate

My Story

Before I get into the details of my story, let me tell you a little bit about my life before chronic pain. I used to wake up at 4:45AM, three times a week and go to the gym for spin class. I also enjoyed Tae Bo and running. I was full of life and never took anything for granted. I used to dance and sing to embarrass my first born, especially if we were in public. I went to work every day full of energy, some may tell you too much energy.

On March 5, 2008, I gave birth to my second daughter. Roughly a year or so later, I started to have a nagging pain in my right temple. I still had pain pills left over from my C-Section that I would take as needed. The pain, at that time, was not constant. As months went on, the pain became more constant and more annoying. I tried to research what it could be on the Internet, but at that time, nothing came up. I then decided to start having things checked out. I first started with an eye exam. Everything was fine, my prescription hadn't even changed. I then went to the dentist, because I was also experiencing minor tooth pain. I ended up having a root canal. The dentist also gave me pain pills. Months went by, fast forward to February 2009. The pain was still there, it was not going away, and it was getting worse. I returned to the dentist. I ended up having tooth #30 pulled, and was given more pain pills. It was also at this appointment that my oral surgeon told me that there was nothing else wrong with my teeth, and the pain I was explaining to him wouldn't have any connection to my teeth. Shortly after that, I made an appointment with my general doctor. During my check-up, my general doctor left her office and I peeked at her computer; she actually Googled- "pain in the right temple". I was then referred to a Neurooptamologist. After filling out 20 minutes worth of paperwork, in which I basically filled out that I was experiencing the pain 24/7, the doctor examined me for maybe 10 minutes. During that appointment, he asked me several times: "do you have the pain now?" I left his office with a piece of paper telling me what items of food to avoid, he told me to stop drinking coffee (I drink one cup a day), and he ordered an MRI brain scan with and without contrast. His receptionist called me to tell me the results were negative. I was so relieved, but wanted to know what I should do next since I still have this horrible pain. There was no response from this doctor. I walked in a few days later and demanded all my records.

By September of 2009, I thought I was going to lose my mind. I was getting up every day, getting dressed, putting my make-up on, going to work and keeping this secret to myself; when all I wanted to do was curl up into the fetal position and cry. Everyone experiences "headaches" this would soon pass. I felt so alone, like no one believed me because I didn't have blood pouring out of some part of my body. Finally, I walked myself into a local emergency room in Bethesda, Maryland. I explained my symptoms, and then a nurse accused me of wanting narcotics. If only she knew that I had a big bottle of Vicodin at home, which was no longer taking the edge off. I left there with a steroid pack that I was to take over the next 5 days. The next day, after dropping off my daughters at school, I started to black out, my breathing became shallow, and my heart felt like it was going to jump out of my chest. I knew I was going to faint, so I pulled my car over. My friend's husband was close by and he came and stayed with me until the ambulance arrived. I was back at the emergency room in Bethesda. I was hooked up to all sorts of monitors. The ER doctor had no explanation, but I left there with a referral to a neurologist, Dr. David Satinsky, and orders to have testing done with a Cardiologist.

Dr. Satinsky is an outstanding neurologist, but I felt sorry for this doctor because I was a mess. He was always so kind and took so much time to listen, and he worked so hard to try to help me. He referred me to a neurologist up in Philadelphia. After months of being treated in Philadelphia, I was so exhausted from Botox injections, so many different medications and all the side effects, and the worst part is that I was still in so much pain. I was also told that my life as I knew it was over. I refused to believe that, considering I was only 34 years old at the time. I kept returning to Dr. Satinsky, who gave me Lidocaine injections directly into my right temple. At first, I would have relief for a few days, but then the injections stopped giving me any sort of relief. During one appointment, I finally just had a breakdown. I cried and looked at Dr. Satinsky and asked what is wrong with me? Will this pain ever go away? I really don’t think I can take this anymore. Dr. Satinsky had heard a surgeon give a lecture that he felt could possibly pertain to my case. He gave me the name and told me to meet with him; afterall, by this point, after numerous MRIs and medications, we felt we had exhausted all treatment options for me. The surgeon was Dr. Ivica Ducic.

I will never forget the day I met with Dr. Ducic, it was August 6, 2010. It was an intense appointment for me. The moment I shook Dr. Ducic's hand, I could feel his gentleness, however, he was extremely professional. He asked me a series of questions about my pain and all my previous treatments. He pushed on my head and I thought I was going to shoot through the roof. And then he said that he could help me. I think I actually blacked out for a second. He started to explain a procedure which involved removing peripheral nerves. I won't bore you with the specific details of the medical aspects, but I will tell you, he was the end of the road for me. I had NO other choices. I remember at one point during the appointment, for a split second, being a little nervous about the surgery, and I asked him a question about risks. He told me a personal story about his wife being afraid to fly and that he always comforts her by reassuring her that pilots know how to operate planes and for her to let them do their jobs. He then, in a sense, comforted me by reassuring me that this is what he does and he didn't want me to worry. I was also referred to The Neurology Department at Georgetown University Hospital and have been being treated there since 2010. At this point in my journey, I was ready to walk over and get on an operating table. On September 29, 2010, I had my first peripheral nerve removal surgery with Dr. Ducic at Georgetown University Hospital. I was SO nervous, but decided to become a comedian. I had a lot of fun with the residents and staff. Pink has always been my favorite color, but since that day, when Dr. Ducic took a purple "sharpie" out of his pocket and started drawing on the right side of my head, where the incisions would be, I have become obsessed with the color purple. I have since been informed that purple is the color for people who suffer from chronic head pain/headaches. For me, however, I had to have a series of surgeries with Dr. Ducic in order to relieve my pain. To learn more about Dr. Ivica Ducic please click on the link below.

http://www.ducicmd.com

Not everyone will have the same story as I do, but this is my story. My relationship with Dr. Ducic really changed after my 3rd surgery, which took place on October 5, 2011. Dr. Ducic listened to me and took a chance in proceeding with another surgery. He conducted the same surgeries on me, just in different areas on my head. Dr. Ducic, in my opinion is the most humble doctor/surgeon I have ever come across in my life. He never allows for you to pay him a compliment. He treats his patients as if they were members of his family. He is not conducting business to make millions of dollars; he goes to work every day to help people who are suffering from some sort of chronic pain. He believes in a solution. I had 5 surgeries in 23 months; this was the necessary medical treatment I needed in order to relieve the head pain I have been suffering from. In February of 2015 I had my 8th surgery. I'm still under the care of Dr. Ducic and taking it one day at a time. This is an isolating condition. I have always felt alone and I have told myself EVERYDAY that I will make something good and positive come from my journey. Again, this is a brief summary of my story. I am in such a better place than I was in 2009. Remember, not everyone will have to undergo several surgeries, most of Dr. Ducic's patients undergo a 45 minute surgery and are back to work/school in 2 weeks. Please feel free to contact me if you need emotional support or if you have any questions for me, from a patient's perspective. Also, if you click on the YouTube icon above, it will take you to my channel. Please note there are some intense videos. I documented my journey… all the real moments; good and bad.