Bentol and Marfan
Bentol and Marfan
I'm responding to a couple of posts here...DickV, my surgeon at OSU Medical Center, Dr. David Brown, is the person who told me what the procedure was called. It is also listed in my discharge papers as the procedure that was performed. I may have spelled it incorrectly, but since I am in the middle of moving, I don't have access to the file. I will post at a later date when I verify the spelling.
Rain, I was diagnosed with scoliosis at age 6 or 7. Because of my extreme height for my age and rapid heart rate, the doctors had me see a number of specialists. For years, no one could agree on whether or not I had marfan because 23 years ago, many physicians had never heard of it. My mother was told that I would be dead by the time I was 16. She refused to give up and me to Augusta, GA every six months for two years to slow my rapid growth with hormone treatments. I began beta blockers at the age of 9 and have had annual echo's since then. My cardiologist has always trusted my instincts on my limits and I pretty much have done everything I've wanted to do (except have children). My philosophy has always been that I want to live, not merely exist. So, I take all I can from each day. My cardiologist has cautioned me on my vigorous activities, but also understands my philosophy on life. He is going to release me to start training in my martial art in February and said that I had more restrictions prior to the surgery than I will have once I've completely healed. To me, it's a personal choice...one can let their particular condition control their life or one can truly live life to its fullest. I choose to live and I understand the potential consequences.
As for waiting too long for surgery, if your son is being monitored regularly, they will tell you when he is becoming increasingly at risk for disection. Of course, disection is possible at any stage of dilation, but as the dilation increases, so does the risk. My case was mild for many years as well. But I went from 4.2 to 5.4 cm in less than two years. We are lucky to have been diagnosed early enough. Many people with marfan die during disection without ever knowing they had a problem.
Please let me know if you have more specific questions. I'm not an expert, but I've known that I've had the condition for nearly 23 years. In all that time, I've never met or even spoken to another person with marfan. I hope you'll keep in touch and let me know how it all goes.
