3 ms·
Man, I need to become a blogger! Been there, Jodi. Probably been worse, much worse, but further along and I can tell you it's entirely possible to come back an
by nonameiguess 3y ago
Man, I need to become a blogger!
Been there, Jodi. Probably been worse, much worse, but further along and I can tell you it's entirely possible to come back and do relatively normal things.
One of the advantages, I suppose, of a high-deductible PPO is not needing referrals. I can't remember the last time I saw a general practitioner and don't have a primary care provider. I've always gone straight to a specialist, but the bad news with spine problems is, even when a care provider has a pretty good idea of what is wrong, or even a completely clear idea, it still may be difficult and take many years to treat.
For reference, I experienced spinal disc degeneration in my mid-30s coming out of the Army. It was never particularly clear why, but probably just genetic. I've been abnormally susceptible to herniations since I was a teenager and my mother and two of my sisters are as well. I used to receive epidural cortisone shots every three months for years, but never had a CSF leak from that. I did have a CSF leak after a microdiscectomy, though, back in 2016. It set me on quite an odyssey. Like her, I was bedridden for a while, could eat nothing but saltine crackers and lost 20 pounds, told to drink a lot and try to self-heal. It appeared I did, but appearance can be deceiving.
Rather than straight busting back out and experiencing headaches and nausea again, I instead grew a cyst on my spinal cord composed of excess fluid pushed into a sac that did not quite burst, but grew to nearly grapefruit size. I couldn't lay or sit in particular ways, couldn't let anything touch it because of how badly it hurt. I needed a walker to be able to move. When I finally got an MRI, they were so worried they pencilled me in for emergency surgery only eight hours later. So I got the patch she's talking about this time, but much more directly since I had to be cut open. I also had a laminectomy during the same procedure.
That did end up being the end of the CSF leakage, but not quite the end of the spine problems. My discs had been so beat up at that point that I'd lost an entire inch of height and was living virtually bone on bone. The sciatica was so bad I felt like I was walking on electrical wires and constantly being shocked with every footfall. I eventually needed a bilevel interbody fusion where they remove the discs entirely and replace them with metal cages seeded with a bone graft sawed off from the pelvis, held in place with titanium rods and screws while the bone grows around it. Today, my lumbar spine is mostly one solid bone, a huge bone you can feel from outside. The resulting limitation in lumbar mobility also leads to hip and hamstring tightness. In middle school, I used to come in 2nd every year in the Presidential fitness contest's sit and reach competition. Today, I can't even sit upright, can't even get to 90 degrees if my legs are straight out in front of me.
Nonetheless, I did come back. It took a lot of patience, starting with physical therapy, eventually striking out on my own and working out very diligently. For a long time, this meant resistance bands and walking and not much else. But progress compounds. 8 years later, I've got a power rack, barbells, C2 rower, and I lift and either run or row at least 6 days a week, sometimes all 7. It doesn't always feel great. I'm still stiff and aching all the time. My joints swell and lock up. I'm not very strong considering how much lifting I do. I'm not very fast considering how much running I do. But 8 years ago, I didn't believe I would ever lift or run again. I still needed a walker. I couldn't pick up my cats. I couldn't put my own shoes on.
Patience, persistence, and hope. It may or may not happen for any particular person, but you can come back from this. There's a lot to be said for still being relatively young.
- legalnomads 3y agoI'm in my mid-40s, so I appreciate the relatively in young ;) Thank you for sharing some of your story. Unfortunately, my case is different to you — with EDS, MCAS, and an alphabet of other issues that underpin this spinal CSF leak. I definitely have hope medical treatment can evolve, but as of now I'm waiting for that to happen while surviving the best I can. I'm pretty even-keeled about it all, and find joy where I can. It's just not a very mobile life. All the best to you!