They have moved Michelle out of the ICU unit and into her permanent room. She is located on the 3rd floor, in the Pediatric unit, room 397, at the North Shore University Hospital in Manhasset, NY.
Unfortunately, Michelle has been in quite a lot of pain since yesterday. The doctors took her off the PCA pump (self administered morphine trigger) Tuesday and started giving her 20mg of oxycodone. The oxycodone, however, made Michelle really nauseous so the doctors changed her over to liquid morphine, but that isn't really helping with the pain. Michelle has an extremely high tolerance to pain meds and the doctors are trying to step her down too quickly. Hopefully we'll get that all sorted out today.
Michelle is also having some difficulty with getting any real food into her system because of her tree nut and gluten allergies. The hospital has assigned a dietitian to help manage her meals, but there were a couple of mistakes yesterday that left Michelle with nothing to eat but a boiled egg and some grapes. I talked to the director of the nutrition and food services department this morning and hopefully they will do a better job today with her meals.
Michelle has continued to work very hard to rehab her neck muscles; pretty much every time she wakes, she does her exercises. She is making great progress with her range of motion. Unfortunately, it is very difficult for her to rehab right now until they get her pain under control.
Michelle got a chance yesterday to read all of your comments for the first time and was lifted once again by the support and encouragement in those words. She thanks you from the bottom of her heart for being there for her during this difficult time.
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Michelle's Hospital
Michelle's Treatment Center
Important Dates
- July 2nd, 2008: Michelle gets stitches removed.
- June 23rd - June 30th, 2008: Post Operative Recovery, North Shore University Hospital, Manhasset, NY
- June 23rd, 2008: Posterior Fosa Decompression Surgery
- May 22nd, 2008: Follow-up visit with Chiari Institute, Dr. Bolognese now prescribes Posterior Fossa Decompression surgery
- April 3rd, 2008: Diamox therapy initiated
- April 2nd, 2008: Initial visit to the Chiari Institute, Michelle is diagnosed with Chiari I Malformation, EDS, POTS, and possible Tethered Cord Syndrome
- February 7th, 2008: MRI of Michelle's brain, findings alert primary physician of possible Chiari Malformation, primary physician recommends that Michelle see a neurologist
Key Terms
- See below
Key Terms
- CELIACS DISEASE: is an autoimmune disorder of the small intestine that occurs in genetically predisposed people of all ages from middle infancy. Symptoms include chronic diarrhea, failure to thrive (in children), and fatigue, but these may be absent and symptoms in all other organ systems have been described. Celiac disease is caused by a reaction to gliadin, a gluten protein found in wheat (and similar proteins of the tribe Triticeae which includes other cultivars such as barley and rye). Upon exposure to gliadin, the enzyme tissue transglutaminase modifies the protein, and the immune system cross-reacts with the bowel tissue, causing an inflammatory reaction. That leads to flattening of the lining of the small intestine, which interferes with the absorption of nutrients. The only effective treatment is a lifelong gluten-free diet.
- CEREBELLUM: A part of the brain situated above the brainstem that controls balance and coordination of movement.
- CEREBROSPINAL FLUID (CSF): The fluid that fills the areas surrounding the brain and spinal cord.
- CHIARI I MALFORMATION: Chiari (kee-AR-ee) malformation (CM) includes a complex group of disorders characterized by herniation of the cerebellum through the large opening in the base of the skull (foramen magnum) into the spinal canal. The herniated tissue blocks the circulation of cerebrospinal fluid in the brain and can lead to the formation of a cavity (syrinx) within the spinal cord. There are three main types of CM. CM1, the most prevalent form, is generally considered to be a congenital malformation, although acquired cases are recognized. It is rarely apparent at birth. CM2 and CM3 are more severe congenital malformations that are apparent at birth and associated with complex defects of the brain and spinal cord. Patients with CM1 may experience no symptoms. When symptoms are present, they usually do not appear until adolescence or early adulthood, but can occasionally be seen in young children. The majority of patients complain of severe headache and neck pain. Other common symptoms are dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and painful tingling of the hands and feet. Because of this complex symptomatology, patients with CM1 are frequently misdiagnosed.
- EHLERS-DANLOS SYNDROME (EDS): Individuals with EDS have a defect in their connective tissue, the tissue which provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein which acts as a "glue" in the body, adding strength and elasticity to connective tissue. Ehlers-Danlos syndrome is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hyper mobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms.
- FORAMEN MAGNUM: The opening of the skull through which the spinal cord emerges.
- OCCULT TIGHT FILUM TERMINALE SYNDROME: In addition to the 'typical' tethering, there is a more common variation referred to as "Occult Tight Filum terminale Syndrome." This variation whereby the filum Terminale is thickened or has loss of elasticity was first noticed and documented in the late 1800's. In this variation, the Filum (a piece of tissue or tendon at the base of the spinal cord that joins it to the base of the Backbone) thickens or hardens and causes downward pressure on the spinal cord. This can actually cause scoliosis as well as most of the other symptoms of the more typical tethered cord. This can be diagnosed the same way with the CINE MRI and by checking symptoms.
- POSTERIOR FOSSA DECOMPRESSION (PFD): A posterior fossa decompression is the removal of the bone from the back of the posterior fossa, called the sub-occipital bone. This is done to restore normal circulation of CSF.
- POTS: Often more simply referred to as postural tachycardia syndrome, or POTS, this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. The defining symptom of POTS is an excessive heart rate increment upon standing. However, as you will discover, there are a multitude of other symptoms that often accompany this syndrome. As such, POTS can be a difficult disorder to detect and understand.
- SYRINGOMYLEIA: occurs when a tubular cavity (syrinx) develops within the spinal cord, causesd by an obstruction of the cerebrospinal fluid circulatory pathways.
- SYRINX: A fluid-filled sac, like a cyst, but occuring inside the spinal cord where it has the shape of an elongated tube lying inside the spinal cord and the bony spinal column.
2 comments:
Hey Michelle'!!! I have to admit reading these updates do make me sad. I hate that you have to be in such pain. Hang in there, I promise it will get better. BTW - It is ok to complain, cry, get pissed, be moody, say bad words, etc. You are entilted and sometimes it helps. We love you so very much!!
Heidi
Give em hell Aaron. I know you can do what it takes to get her taken care of!!!!!
Hang in there, Michelle!!!
Mykelle
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