Michelle made it home from the hospital on Monday afternoon and was greeted at the door by two care packages filled with comfy clothes and coloring books.
Unfortunately, she is still in a lot of pain and has grown very groggy from the amount of narcotics and muscle relaxers in her system. Complicating matters, is the fact that Michelle's throat has been bothering her making it difficult for her to swallow and eat enough to balance out the medications she is taking. We actually had to go to the ER around 1:00 AM Tuesday morning because she had grown very nauseous and dehydrated. The ER team gave her two liters of IV fluid, a couple doses of potassium because her electrolytes were low, and an anti-emetic medication that helped subdue her nausea.
Last night she was able to get random periods of rest, and her throat seems to be feeling a little better so she was able to tolerate a small amount of soft food. The stitches are supposed to come out today, and we will be going over to her hospital later to get them removed. 48 hours after the stitches are out, Michelle can wash her hair for the first time which is still all gacky from the surgery. I know that washing her hair will make her feel much better.
Thanks for continuing to check in and send your love to Michelle.
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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.
3 comments:
To show my support I've cut my hair off too! We can dye our hair pink and terrorize old ladies at the mall! Or I can keep you company when you get bored. Two of my favorite things are comfy clothes and coloring books! And I've been dying to play rock band!
I'm glad to hear that you are improving so much! You are probably the strongest girl I know. Please call if you need anything at all!
Alissa
Stay Strong !!!
Love ya Michelle. I hope you continue to feel better.
Mike Wichart
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