リリ・ヨハンソンのインスタグラム(ninjacatgirl) - 1月10日 00時14分

I have been completely bedridden since April 2022. It started with a lumbar puncture, which then lead to a blood patch three weeks later. The blood patch made me feel even worse— it felt as if my brain was being electrocuted and I started getting spasms in my legs all the way up to my stomach and back. I suddenly had extremely fast pulse and heart rate upon standing and my legs and feet were painful and turned blue.⁣
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Fast forward a few months the pain and disability rapidly increased and I was diagnosed with adheasive arachnoiditis. My symptoms and pain is severe. My MRI shows that my nerve root sheets are enlarged, the nerves inside the spine have adheared to each other and the spinal canal (think of a cancer inside the spinal canal that keeps growing destroying the nerves), the end of my spine looks empty of CSF. As soon as I sit up I get pressure pain in my head and I soon have to lay down so I don’t pass out. ⁣
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Because of the arachnoiditis I cant risk pursuing the CSF leak. The inflammation will get worse and the adhesions and scar tissue will increase. ⁣
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My hope is to try stem cells to stop the progression and restore some of the damaged tissue. In a perfect scenario stem cells can help close the CSF leak. If the CSF leak closes I can at least be upright, instead of spending 24/7 in bed on my side and keep some function in my legs.

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