Ok, what do I do now??????

     In the meantime, while waiting for the next CT Scoliosis Chapter meeting and after much searching online, I found a web-based Support Group. I immediately signed up and started reading posts. I could not believe what I was reading. I felt at peace knowing there were so many others like me, yet so few. I felt peace knowing that I wasn't all by myself, yet I was so all alone. I felt at peace to know that there were people, mostly women, out there who could give me the support that I could get nowhere else. I still, after all of these years, belong to this Support Group. For close to six years now, these women have been my "sisters". I have seen them come and I have seen them go. I have seen the words of shock and anger and the words of acceptance. I have seen others get formally diagnosed, have surgery immediately and never hear from them again. But.....there are the select few, among them the group moderator and founder, Cam Maltby. Cam is a retired air traffic controller. She lives in Nantucket and her husband is a pilot for one of the major airlines. Cam had her surgery a few years before I even knew that I had Flatback and she has been an endless support to me. Funny though, over the years I shared so much of myself, yet I wouldn't know any of these women if I passed them on the street!!! Imagine people knowing so much about you, but they could walk right by you and you would never know it?!? On the opening page of the Support Group page is states:

     "The group focus is on members whose primary scoliosis surgeries took place in the 60's, 70’s, and 80’s and now find themselves facing the challenges of Flatback deformity and/or fixed sagittal imbalance which is often the result of the use of nonsegmental (Harrington rod) instrumentation. Flatback deformity is a loss of normal lumbar lordosis or curve. The medical term for this is fixed sagittal imbalance. Flatback typically develops when there has been a posterior spinal fusion with distraction instrumentation (ex: Harrrington rod). It is often accompanied by degeneration, instability, and stenosis. Most people also experience fatigue and muscle pain. A leaning forward posture, or being "bent over" is typical.
     Often this leads to revision surgery, which includes instrumentation and augmented fusion. Typically this reduces and stabilizes the Flatback deformity and reestablishes balance. With proper selection of technique for each individual patient's spine, a qualified and skilled surgeon may improve the patient’s pain, quality of life, and functional capacity. This is not an operation to be entered into lightly.
     This group offers members support and understanding while we each move through the decision to undergo, delay or forgo surgery. We also offer each other guidance, support and information on finding appropriate methods for reducing pre- and post- operative pain or disability. We are a safe and caring place to share life experiences as we each deal with our own personal “scoliosis odyssey”.

     I don't know where I would be without this group of compassionate and giving people (I am saying people because I hate to keep saying women, because we do have some male members. Remember though that Scoliosis affects dramatically more females than males, so this isn't unusual or unexpected!). There is a woman who belongs to the group who is a fabulous painter and she painted a portrait of a woman with scoliosis. It is the logo picture for our group. I wish I could paste it here on the site, I have tried numerous times but I think it may be copyrighted as it won't allow me to copy and paste it. I understand Ann wanting to protect her work, but I am saddened that I cannot share it with all of you. All I can say is that it completely represents "us". "Us" as in the Scoliosis community. The OLD Scoliosis community. It is a haunting portrait of a female with Scoliosis. I don't know if it is a self-portrait or not. All I know is that when I look at it, I see ME.

     The month passed quickly and soon I was heading to L&M for the CT Scoliosis Chapter's meeting. It was September 2004. Dr. Glazer was already there when I arrived (late, of course) and I quickly grabbed a seat next to a woman that I had not seen at the previous meetings. He was addressing Scoliosis in general, and then when discussing the new options for instrumentation, he proceeded to speak of Flatback. I did note that as soon as he said the word "Flatback", it was NOT my imagination, but he looked directly at me. The woman I was sitting next to, was charming and we began to quietly chit-chat back and forth and she seemed very nice. At one point, I mentioned that I had not seen her at any of the previous meetings that I had attended and inquired whether she had had surgery for Scoliosis and she very politely responded, "Oh no. I am Dr. So & So, I am Dr. Glazer's wife". Ohhhhhhhhh!!!!!!!! Duh! That's me! So she asked me if I had Scoliosis fusion and I said "Yes, many years ago" and I asked her for Dr. Glazer's business card. At that moment, I heard Dr. Glazer introducing her to the crowd and she was embarassed, as was I, because we hadn't been paying attention. We were like two young school girls ready to get in trouble with the teacher! He laughed it off and continued speaking. She quietly said to me, "Great wife I am!" and we laughed. After feverishly tearing her pocketbook apart, she blushed and apologized as she didn't have even one card. However, she had a pen and I had a piece of paper and she wrote his number down for me. She said, "I don't know what your issues are, but if anyone can help you, I KNOW that my husband can. Call him." I thanked her and then waited around for a little while in hopes to speak with the infamous Dr. Glazer, yet he was immediately ambushed by all of the other people, so I quietly left without ever speaking to him. Friends and coworkers asked me the next day why I didn't stay as long as possible to talk to him but I figured that if he had surgery the next morning, I didn't want to take any of his time. Free time. I hate when people do that. I mean make an appointment. Everyone seems to want something for free - even a medical diagnosis. All I knew was that if he was operating on me the next morning, I'd be wanting him well-rested. I distinctly recall one friend saying, "I would have never even thought of that!". Yeah, well I do. Sometimes I think I really do worry about everyone but me. There -- BELIEVE IT OR NOT -- is a name for this behavior. No lie, it is called SCOLIOSIS OVER-COMPENSATION SYNDROME! Oh dear God, now I have another syndrome! It never ends!! On the drive home that fateful night, I do remember questioning myself, "Do I call or don't I?" That was the big question.