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rlm-1966
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PLEASE CONTINUE TO KEEP THEM IN PRAYER.....READ BELOW.
THANKS PEP
Subject: Jacqueline's Section Filumn Terminal Surgery 6/11/08
Hello All,
Jacqueline had spinal cord surgery to release her spinal cord that is tethered due a neural tube defect at birth and is associated with people with Ehler's Danlos Syndrome. Jacqueline, Kathrine and I all have EDS and were diagnosis by the leading expert, Dr. Clair Francomano. Jacqueline is in recovery and must lay flat for 24 hrs. to insure no cerebral spinal fluid leakage. This is the same surgery I had in January of 07 and hopefully, will prevent the surgery I had in Jan of 08.
God's grace has provided me with the need strength to wheel my daughter into surgery and know no fear. Please continue to pray for my family and me.
Thank you
Ann
The hospital is : North Shore LIJ University Hospital, 300 Community Dr., Manhasset, NY 11030 She is in ICU today and will move to pediatric's tomorrow. We will be here for at least three to maybe five days and then back to the Ronald McDonald House of Long Island.
Tethered Spinal Cord Syndrome or Occult Spinal Dysraphism Sequence:
A neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord. The course of the disorder is progressive. Tethered spinal cord syndrome may go undiagnosed until adulthood, when sensory and motor problems and loss of bowel and bladder control emerge. This delayed presentation of symptoms is related to the degree of strain placed on the spinal cord over time. Tethered spinal cord syndrome appears to be the result of improper growth of the neural tube during fetal development, and is closely linked to spina bifida. Tethering may also develop after spinal cord injury and scar tissue can block the flow of fluids around
THANKS PEP
Subject: Jacqueline's Section Filumn Terminal Surgery 6/11/08
Hello All,
Jacqueline had spinal cord surgery to release her spinal cord that is tethered due a neural tube defect at birth and is associated with people with Ehler's Danlos Syndrome. Jacqueline, Kathrine and I all have EDS and were diagnosis by the leading expert, Dr. Clair Francomano. Jacqueline is in recovery and must lay flat for 24 hrs. to insure no cerebral spinal fluid leakage. This is the same surgery I had in January of 07 and hopefully, will prevent the surgery I had in Jan of 08.
God's grace has provided me with the need strength to wheel my daughter into surgery and know no fear. Please continue to pray for my family and me.
Thank you
Ann
The hospital is : North Shore LIJ University Hospital, 300 Community Dr., Manhasset, NY 11030 She is in ICU today and will move to pediatric's tomorrow. We will be here for at least three to maybe five days and then back to the Ronald McDonald House of Long Island.
Tethered Spinal Cord Syndrome or Occult Spinal Dysraphism Sequence:
A neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord. The course of the disorder is progressive. Tethered spinal cord syndrome may go undiagnosed until adulthood, when sensory and motor problems and loss of bowel and bladder control emerge. This delayed presentation of symptoms is related to the degree of strain placed on the spinal cord over time. Tethered spinal cord syndrome appears to be the result of improper growth of the neural tube during fetal development, and is closely linked to spina bifida. Tethering may also develop after spinal cord injury and scar tissue can block the flow of fluids around
