リリ・ヨハンソンさんのインスタグラム写真 - (リリ・ヨハンソンInstagram)「I have some news… I’m not sure how to explain it well, since I’m still in the process of understanding it all. But I had a consultation with a world renowned tethered cord expert and surgeon in the U.S. ⁣ ⁣ She said I have an occult tethered cord. That my whole filum is tethered, and that the blood patch made me symptomatic. That I would’ve gone a whole life without pain and disability, were it not for the lumbar puncture and botched blood patch.⁣ ⁣ The good news was that she didn’t think I have AA —“only” arachnoiditis. AA and TC symptoms overlap so much. I truly thought I had catastrophic AA at times because of my leg pain and numbness. I don’t know what to believe though, since the (very few) experts say different things. Anyway, she thinks I’m a surgical candidate for tethered cord release. She told me she could repair the leak while she’s in there, and the cost is not that much more than having CSF leak surgery done in Switzerland. The risks with tethered cord release surgery are insane though, but if it would be successful I could literally get my life back. Possibly be able to sit again, lay on my back, bend. She said 85% of her patients get relief —back pain relief, painful and numb legs go away, etc.⁣ ⁣ I should add that I of course have been researching like a mad woman, sent my images to other surgeons for second opinions, spoken to other patients, etc.. but the surgeon who diagnosed me is the best in this field. It’s unfortunate but the occult form of tethered cord is really not well recognized. Many neurosurgeons and radiologists aren’t trained to read MRIs correctly for OTC. ⁣ ⁣ The diagnosis and possible treatment took me by surprise. It’s like a ray of light in the deep dark hole I’m in and have been in for the past year and a half. I’m uncertain on what to do. I feel scared and so alone. No matter what I chose and if it doesn’t work & I’ll get worse, then I’ll have my family and a ton of ppl saying to me I made the wrong decision and I should’ve went with the other one. So it’s a lot to take in with many things to consider.⁣ More than ever, I’m so thankful for your amazing friendship and kindness. I feel the love and support from all of you ❤️」11月5日 19時03分