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4/13/2017 Latest post:
We decided to start a Caring Bridge page for Elizabeth out of necessity...to help communicate with all the people we are blessed to call family and friends (and those special people that pray for Elizabeth that don't even know her personally).. Thank you to all of you. We are humbled by the outpouring of love and support. Beyond communicating, the most important reason to have this site is to send our most sincere thanks.
As for Elizabeth's story, we'll try to keep it short, although we will provide some detail, since even close friends have been unaware of what has been going on. In February of 2016, Elizabeth was hospitalized for severe lower right abdominal pain. Every possible cause was ruled out, and she was sent home, still in pain. They did mention that she had a "protrusion of her spine", but told us not to worry about it. As time passed, her pain came and went, and new symptoms started to appear. Over the past year, she has dealt with the ongoing abdominal pain, dizziness, nausea, vomiting, GI and bladder issues, tingling in her toes, rashes, flushing, fevers, back and sacral pain, sore throats, ear pain, headaches/migraines, etc. We went for a second opinion and went through a year's worth of tests, labs and imaging. She is being treated for dysautonomia (autonomic nervous system dysfunction), but doesn't fully fit the diagnosis. She was also being treated for GI issues, but nothing the doctors have tried seems to make any difference.
In the fall of her 8th grade year, she began having severe pain walking, sitting and moving in and out of certain positions. We were told that the "protrusion" in her spine was actually a cyst, located within her spinal column, in the sacrum (tailbone area). After much research, further testing/imaging and many, many doctor appointments, we realized that many of her symptoms could be attributed to the cyst pushing on the nerves in her spine, and pushing out the bones in her sacrum. Due to Elizabeth's symptoms, and the large size of her cyst (about 5 1/2 cm), the leading neurosurgeon in the area of spinal cysts agreed that removal would be the best course. Her surgery is scheduled for the morning of Monday, April 17th. The recovery will be a long one. The nerves need to recuperate, and the bones of the spine that are removed are replaced with a polymer plate that dissolves over the following year and needs to scar over. The first one to three months will be the toughest (no bending, twisting or lifting more than 5 pounds), but even after Elizabeth feels better, it will be important she does nothing to further damage the nerves or the scarring process.
Since many of her symptoms cannot be attributed directly to her cyst, she has a second surgery scheduled for May 9th, to get to the bottom of her abdominal pain, fevers, flushing, nausea, etc. That will be a much easier surgery with a faster recovery, thank God! Hopefully we will have the answers we've been seeking once the surgeries are behind her. There is a chance we won't need to have the second surgery if the first does clear up all her symptoms (that would be a miracle, and we'd welcome it!), but we're planning on the second surgery at this point.
Elizabeth has been out of school for over 70 days this school year, so our hope is to have her symptom free so she can focus on her work and return before her class graduates. Besides the pain, being away from her friends has been a huge bummer. Yet, despite this being a long road, much good has come out of it as well. She feels so supported and loved by so many. It would be impossible to thank everyone , so we'll end as we started, by sending out our love and gratitude.