Lori, Jim, Jan and Debbi, thank you for taking the time to post on this thread...and with some great thoughts and comments.
I didn't know my tumor was considered life threatening until after I'd already had surgery. I did know that (1) it had to come out, and (2) there was a possibility of some pretty serious complications during or after surgery. For the two weeks between diagnosis and surgery, I spent many hours considering the possibilities and trying to figure out what my Life would be like post-op. And as Jim describes...some of the thoughts did bring me to my knees. I had four young children and a husband that needed me to return to them...and while I wanted mostly just to return to them...I also wanted to come home in the best shape possible. Anyone who knows my story is already aware that I did not research AN until well after I came out of surgery. My husband was the one who did the lion's share of the research (along with my dad). What they read on-line was terrible...and I had no idea what they'd learned. They feared greatly for my future quality of life.
I wish more people who have come through well would post. I have a feeling many people make it through and don't look back. I promised not to take my recovery for granted and to share my experience with the hopes of helping others envision positive outcomes. There is a fine line between diagnosis and prognosis. With any condition, it's hard to predict exactly what any one patient will experience. There are so many variables. AN is no different. Before surgery, I was told of all the possible complications, and was given an estimate (from a local neurosurgeon) of 8-18 hours in surgery with 5 days to 2 weeks in the hospital afterward. According to her, I would likely need physical therapy to assist with things like speech, swallowing, and regaining balance. My husband felt there was one shot at getting my tumor out with the fewest complications and set out to find another surgical team for me (he decided on Rick Friedman and William Hitselberger at HEC). In the end, my 4 cm tumor was completely removed in 3 1/2 hours and I was able to leave the hospital 4 days later. Four years later, I have one lingering side effect: decreased hearing in my affected ear. Brain surgery was not easy...but I've had five children, and labor was honestly worse
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My youngest daughter was born in 2006 and was diagnosed with Down syndrome at birth. We were told to expect that she would be delayed in all areas, that she would have low muscle tone, hearing and vision issues, and chronic ear, sinus and chest infections among a host of other things. The day she was born, we were told of all the ways she was "imperfect" and of all the health and developmental issues we would most likely face with her. Fast forward two years...she is a healthy and vibrant little girl--and very few of the things we were told have come to pass. We were told to lower our expectations with her--to not expect too much, too soon. I wish we would have heard other voices telling us not to listen to expectations/limitations. Diagnosis is not prognosis. Yes, it is a fact that our daughter has Down syndrome. Yes, she is developmentally delayed...and yes, she is more at risk for certain health issues. She is also a
true joy. She’s colorful, honest, willful, sweet, and spirited. She is able and full of Life. No matter what she’s doing, she gives her all. Her heart is true, her spirit boundless and her potential infinite. That--nobody told us to expect.
As with most conditions, there are a wide range of issues and experiences in individuals who have Down syndrome, just as there are with those who have Acoustic Neuroma. So many variables exist, that it is impossible to predict a “path� or “future� for any one person. Yes, there are statistics that we should consider in making our decisions, but numbers and science aren’t foolproof.
It is important to be realistic. It is also important to be hopeful--and "good news" stories (or stories about good things that have come out of less-than-ideal situations) give reason to be...
