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My Battle with CSF Leak/ Brain Hemorrhage/Spontanious Intrarnial Hypotention

Started by Pixiegirlt76 on 05/04/2016 2:17pm

Hi my name is Tina and I am 40 years old and I've been battling a rare condition called CSFLeak (Ceribral Spinal Fluid Leak) that has caused some pressure to the left side of my brain which has caused a Brain Hemorrhage and my brain to sag due to the lack of Ceribral Fluid. I've been battling severe migraines nearly 10 years now primarily due to a few vehicle accidents in the past causing injuries to whiplash/neck and back and spine so I've had a tremendous amount of back and neck pain for many years. I've had many treatments from trigger point injection which did not help, acupuncture that did not help, medications of all sort those did not help. So now that it's progressed and since January 2016 working at my past job that I had to voluntary quit due to my medical conditions being so concerning and serious. I took myself to the ER in January when I couldn't bare to move my head/neck side to side and was in excruciating pain it went all the was down my spine, this gave a strong metallic taste for a week not knowing what caused it (Cseribral Fluid) so once I was at the ER the DR ran a MRI and had found I had 3 herniated disc's 2 in my cervical where my neck pain was that was compressing on my spinal cord and 1 in my lumbar more on the left side causing nerve pain down my legs. With this pain I could not cough/sneeze/or clear my throat it felt like I was having a stroke. I then made an apt to see a neurologist ASAP and he wanted to do a MRI with and without contrast finding that I had multiple dura tears to my spinal cord and pressure and fluid (blood) on my brain this is where the Spontaineous Intracranial Hypotention falls in place and CSF Leak was determined. I then was admitted for 2 weeks undergoing many treatments from blood patches to T-Spine CT Guided Epidural, Flouroscopy and a CT Myelogram all of this being painful to endure. I was then stable enough to go home and continue to follow up with my specialist for further testing or possible surgery to fix the Prodruding Disc's and the CSF Leaks if they continue. Physical Therapy may only be temporary relief to help strengthen my back and such but won't fix this in the long haul. It all scares me because I'm a wife and mother of 4 beautiful girls ages 5,9,10,13 and there just and confused by all I'm going though as I am and I don't like to see them see me go through all this pain. I'm fighting for them every day and will continue this fight. My husband has started up a GoFundMe account (help support Tina's CSF) to help our family and with any support will help us with the cost of medical/fuel/child care/food so I can get the care I need to continue many years with my family.

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