I went from being active and fully functioning to completely bedridden 24/7 in constant pain. Because of a lumbar puncture I am leaking spinal fluid really fast and I have to constantly lay flat to survive.
Things went from bad to worse when I was diagnosed with Adheasive arachnoiditis. A horribly debilitating condition that cause the spinal nerves to stick together and malfunction. The best way I can describe the pain is being torched, stabbed and electrocuted at the same time all over. I can’t sit, I can’t stand, can’t lay on my back. My feet are going numb and the nerves in my legs, tailbone and back are constantly pulling and burning. If there is an hell I am living in it. After going to every hospital in and outside of Tokyo for help I lost hope, because no doctor wants to/can treat this rare disease.
I should not do any more invasive spinal procedures because of the active inflammation in my spine which has the risk of aggravating the arachnoiditis. However, because of the chronic CSF leak I need surgery to be able to live an upright life again.
I’m in contact with the only two surgeons I know of that does exploratory iatrogenic spinal leak surgery—Dr Schievinck in America and Dr Ulrich in Switzerland. Because the surgery cost in the US is too expensive for those without insurance, my hope is to be able to afford surgery with Dr Ulrich in Switzerland at the lindenhof hospital.
I am pushing away my pride to ask people to help me financially get these treatments done. It could literally save my life. I’m completely disabled fighting my hardest not to give up. I lost everything to this leak and disease I don’t know what else to do but to reach out to you.
The quotation I received from the hospital in Switzerland is over 41k Swiss franc, or ca 46k usd, or 500k sek.
Thanks to everyone who have donated so far I have enough for renting a stretcher one way to Europe as well as hiring medical staff.
I deeply appreciate your understanding, compassion, and support during this horrific period. With your help, we can make a difference and change the outcome of my life. Thank you from the bottom of my heart ❤️
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