We have a diagnosis....

Following is a excerpt from the National Organization for Rare Disorders that explains what is going on with Jamie right now. To add to this, as many of you know, they transferred Jamie from St. Vincent's / St. Clair to Children's Hospital on Saturday night. Jamie had complained that her back was hurting about a month ago. Two weeks ago, a knot popped up on her spine. Called the doctor and got an appointment. Before we could get to the doc, she began having real bad headaches. When we get to the doctor, she wanted a MRI done because she could feel the knot as well. She wanted to treat the headaches as migraines because truthfully the symptoms fit that. So doc prescribed two meds - one for a daily basis and the other on an acute basis. So we have been on meds for about week and headaches are not any better. Friday she went for the MRI and went back to school. Two hours later we get a phone call that she has "fainted and her face is fire red." We go and get her take her home. Called doc and said I don't think the headaches and the back is related - may just be a bug...take her home and bedrest for next 48 hours. Saturday morning she still was not feeling well and her eyes wer 4 mm dilated. At this point, I call the doc back and explained what was going on. The moment I said her eyes were dilated, he said, "stop...go to the er...her mri has just come back and she has a syrinx". He went on to kind of explain what it is. He did ask us to go to the local ER so that he could call the ER doc and explain ther seriousness of this. By the time we got to the ER, the ER had already been on the phone with neurosurgery at Children's. They transferred us to Children's. We were told that this is a very rare disorder and that there are three kinds. One is that a child is born with, second is tethering and third is that it is cancer. They feel that if she was born with it, then it would have been found when she was small and in the hospital for the first round of cancer. The tethering is when a cyst forms and then gets caught up in the CSF and gets stuck to the spinal column - hence the term tethering. The third is cancer which is pretty self explanatory. The docs said the second one, tethering, is the most common reason, but since Jamie has had cancer before, the third rises above the tethering. We are praying it is not cancer. We know she is going to have to have surgery regardless. Whatever it is, we are praying that it will be the least painful and damaging to Jamie. As you read this small article you will understand the severity of this. Thanks so much for your prayers.


Synonyms of Syringomyelia

Hydromyelia
Morvan Disease
Spinal Cord Cyst
Syringohydromyelia
Disorder Subdivisions



General Discussion
Syringomyelia is a neurological disorder characterized by the formation of a fluid-filled cyst (syrinx) within the spinal cord. This cyst may, for unknown reasons, expand during adolescence or the young adult years, destroying the center of the spinal cord as it does.

As the syrinx expands, it affects the nerves that stimulate the patient’s legs, arms, back and shoulders. In turn, the affected individual may feel considerable pain and weakness, and may lose the ability to distinguish hot from cold objects. The combination of symptoms and signs may vary considerably from person to person, depending on where in the spine the syrinx is located and how much it expands over time. Often, the symptoms develop slowly. Unless the condition is treated surgically, it may lead to neurological deficits and chronic, intense pain.