Raising awareness. Kelsi missed 2 days of school last week and many prior. She has been taken out of PE and may also have to be taken out of band. :( She has always been athletic and has a passion for softball. Kelsi was super excited to be apart of WO band program and is playing the Tuba. She will be having 3 more MRIs on Thursday and see her eye doctor. (Her peripheral vision has already started deteriorating) Friday we revisit her Neurologist in Tyler to check on where we are in treatment and if a referral will be made to Childrens. ( Two more days of school missed) Because this isnt labeled as cancer many are unaware of the seriousness of this disease. Pseudo means: False; deceptive; sham. Apparently similar. Having this disease has all the effects of a brain tumor without a cure. No Chemo options. No surgical removal options. She pushes herself every morning to go to school. To be normal. Most days she comes home and goes straight to sleep. On the outside she looks normal. On the inside shes suffering. Sixth grade, the first year in Jr. High, and shes missing out on so much. From what Ive learned so far, below, Ive done by best to describe this disease. Pseudotumor cerebri is a condition that affects the brain. The name of this condition literally means false brain tumor. It is likely due to high pressure within the skull caused by the buildup or poor absorption of cerebrospinal fluid (CSF). Pseudotumor cerebri is most common in women between the ages of 20 and 50. ( Kelsi is only 11) Symptoms of pseudotumor cerebri mimic symptoms of large brain tumors, such as headache, nausea, vomiting, and pulsating sounds within the head. Pseudotumor cerebri also cause a rare condition called empty sella syndrome. This can lead to permanent loss of sight, or in rare cases, death. Treatment is aimed at the cause of the pseudotumor. A lumbar puncture can help relieve pressure in the brain and prevent vision problems. Other treatments may include: Fluid or salt restriction Medications such as corticosteroids, acetazolamide, and furosemide Shunting procedures to relieve pressure from spinal fluid buildup Surgery to relieve pressure on the optic nerve Weight loss ( Kelsi is not overweight) Patients will need to have their vision closely monitored. There can be vision loss, which is sometimes permanent. Follow-up MRI or CT scans may be done to rule out hidden cancer. There is not a cure. This is a lifetime rare disease. Please pray for healing for Kelsi! Thank you all who have been so supportive!! Please help raise awareness. The ribbon designed for this is my profile picture.
Posted on: Wed, 01 Oct 2014 23:55:13 +0000
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