*** Chiari Malformation is a serious disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms: The procedure involves: removing a small section of bone in the back of the skull. They place two rods into the skulls and 2 screws to further hold the rods in place. Then Neurosurgeons open the covering of the brain (the dura) and sew a patch in place to enlarge the covering. This provides more room for the brain and relieves the pressure.
Syringomyelia is a rare disorder in which a cyst forms within your spinal cord. As the cyst, which is called a syrinx, expands and lengthens over time, it compresses and damages part of your spinal cord from its center outward. Damage to the spinal cord caused by a syrinx can cause symptoms like progressive pain, stiffness, and weakness in the back, shoulders, arms, and legs. Individuals with the disorder might lose the ability to feel cold and pain normally it can cause paralysis and in some case even death.
Bens third issue is much more complex and requires a Trans Oral surgery which involves higher risks or infections and other serious complications. This is to repair the Dens bone ( Basilar Invagination)
Ben has been hospitalized 5 times since December with a total as of this date May 16th ,54 days and as I write this is again inpatient, this time in a rehab facility, because on May 1,2014 he lost feeling in his left leg and the ability to walk on his own. Ben has battled Menengitis, a Psuedomeniga seal leak with caused his body to fill with CFS fluid,and now the loss of his independence because of the inability to stand or walk on his own.
Ben was hospitalized at Upstate on May 1 2014 for 12 days before being transfered to the rehabilitation facility. The doctors are unsure why this has happended and what the next step is for Ben.Mom hs been told they have done all they can do to help and it is time to seek out other medical experts.
My mother has been in touch with the Chiari Institute in Long Island, John Hopkins,Philidelphia Childrens Hospital, among a few. She will not stop until she finds the answers and gets Ben the help he needs. We all want Ben to get the medical help he needs and deserves. We want him to walk on his own with his classmates when he graduates in June 2015.
Mom has been off work over 480 hours since this all began and since January has been off work without pay. She has remained by Bens side and will remain with him until he comes home. My mother is a single parent, and her insurance is the only one ben has and sadly the medical expenses are building up with expenses not covered by her insurance.
momwill travel with Ben to seek the specialists opinions and this will cost her travel expenses,lodging,food, along with the costs of keeping her home running while they are gone.
This has been such a difficult time for our family and so many friends have stepped up to offer assistance to us over these very difficult months.
I am asking again to please consider helping Ben and my mom, please share this with our friends and family members so we can take some of the financial burden off my mother so she can focus on Ben knowing others are here to help her as she has helped so many others over the years.
Thank you all!
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