Facing spinal fluid leak surgery after 25 years

I've been wanting to share my story and perhaps find a community through this outlet for many years. I was always daunted by trying to communicate the extensive history with my CSF leak. And it has gotten considerably more complicated in just the last few months so I will try and condense the last 25 years to the best of my ability.

When I was 24 yo (I am now 52, ugh) I became sick and after months of testing and diagnosing, it was determined a spontaneous CSF leak at T1/T2 was the culprit. I had a blind blood patch and started to improve though frequent headaches were now the norm. I was able to return to college, get married and move with my family. About 5 years later, I started to have symptoms such as foot drop, patches of numbness on left side and weakness on right. More testing determined there was some tissue growth at site of previous leak that was pushing on my spinal cord and I had a laminectomy, along with a decompression surgery as I was presenting with chiari malformation. I had a good 10 years after this surgery, still had the headaches, had some neurologic deficits and chronic pain but could function fairly well and participated in life as normal. At about 40 yo, I was losing more days to headaches and was losing mobility, slowly but surely. After my divorce a few years ago, I moved back to northern WI to stay with my mom after my dad passed. I was working part time, helping with her and managing as well as I could. I've always had problems with my balance and have dealt with the pain i but stayed as active as I was able as often as I was able. In the winter of 2024, I started slowing down, more pain in more places, more falls, more weakness, more incontinence. After testing, I made it to the CSF clinic at Mayo in Rochester, MN. I was and am stunned that my doctors determined I was not only leaking but probably had been since this all started more than 25 years ago. I feel lucky that I have lived as well as I have for so long with this but at the same time, all those years of feeling like "why am I not better? I'm supposed to be better"...well it's kind of hard to wrap your mind around it. It seems the technology to pinpoint my leak didn't exist until recently. I had the standard myelogram in June and then a dynamic myelogram just 2 days later to finally pinpoint the leak and confirm it really was a leak. Now I'm planning surgery to hopefully seal it up. It's even more of a risk than normal as the tear in my canal is being occluded, or stopped up, by my spinal cord. My cord is also very very thin at this occlusion so I am scared as heck to come away from surgery paralyzed. It must be done, I am only 52 yo and for the last few weeks, I'm barely leaving the house. It's a chance I have to take and I trust my surgeon completely. I know that the surgery is really to just stop my continued deterioration, I know I'm not going to running and skipping again but I want to be able to care for my elderly mother, travel to visit my grown kids and just LIVE. Constant pain and weakness is not gonna get me there!

I did my best to consolidate, there's a lot more to the story, of course, personally, medically, emotionally, etc. But I'd appreciate anything you all would like to share with me. It's awfully isolating to not only be disabled but with something so dang complicated and unusual. My best to you all.