I don’t get on here very often so just read your post. I’m from western Washington too (though I’ve since moved to ID) and am just so sorry for what you’re going through. It is so hard when you feel like your symptoms are disregarded, or there is no hope of them improving.
Can you try to go to a different neurosurgeon? I went to Dr Ellenbogan (sp?) up in Seattle 2 years ago and he was
very helpful and readily suggested surgery for me. I was extremely dizzy and couldn’t walk very straight, but could walk. I did have numbness in my hands and feet as well, but not completely immobilized. My herniation is nearly 15 mm. Not sure what your other symptoms are but it would be awesome if you could get a second opinion, especially if you feel that surgery would help. I have chosen not to pursue it at this time. Have you had a CINE flow study? I haven’t myself but have heard that can help figure out if your CSF is really flowing or not (is that right?)
Just curious, have you (or anyone else reading) tried different elevations? In WA we were at sea level and my symptoms were pretty constantly terrible. We are currently at 3,000 ft… first 6 months were hard, but I have much fewer symptoms than before. I really have no clue if that has helped or not, but when I’m back in sea level areas of WA and OR I tend to be more symptomatic, so I do wonder, and I’m just curious if you’ve tried that. Going through passes of course always makes my symptoms worse, but if I stay in higher altitudes I seem to do better (once your lungs adjust to it as well, haha. Hiking at first was turtle paced!)
Another thing that helped me, which was honestly annoying to hear suggested at first because it seemed soooo impossible is exercise. Not necessarily workout exercises, but just lots of movement throughout the day. I have no idea if you already do or if your schedule allows for it… for me I’ve noticed my symptoms are 10x worse and much more constant when I have to work in an environment like you said you do- 8 hours sitting at a desk, or just doing computer work, etc where you don’t have to/can’t get up much. Thankfully it has worked out for me to help run a small hobby farm, where I’m milking goats, taking care of farm animals, training dogs etc all day. So I’m doing light, though physically active work pretty much all day long. I have noticed a tremendous difference in how much better I feel when I can be doing gently active, well-paced activities throughout the day. I have no way to support this theory, but it’s almost like it just gets things flowing better, which reduces the inflammation, and my brain can function more freely too. Not to mention just being in the great outdoors! I understand if your job wouldn’t allow for this, but thought I’d throw it out there in case it could give you some ideas of what could possibly help…
Of course the other two things I’ve noticed help a lot is getting enough sleep (essential! Though I know it’s hard for some people. That’s where the exercise helps too, though, you actually feel tired enough to sleep!) and drinking tons of water. Honestly in my case I believe it has also been prayer as well, as my symptoms were so terrible even 8 months ago that I felt broken like you, that things would never improve. I totally know what you mean when you said it feels like it breaks you when they say there’s no cure, etc I mean, how depressing! I’m not sure where you stand in regards to faith, but for me the only true cure I have found is Jesus- especially emotionally. When I was 17 (10 years ago) I almost committed suicide because I was on the breaking point of not being able to handle the physical and emotional pain anymore. But the Lord saved me from that. I do not always have the perfect attitude, I still have so much to learn and so far to go! But I can truly say that though most of my life has been full of pain like you, I am so grateful to be alive, because I get to experience the hope and joy of Christ who helps me have hope and faith, and even joy in the midst of the pain! He cares about each of us individually, and even in our pain will be there for us if we seek Him. That is truly a miracle, and even if I never am fully better before I die, I’m just so grateful to get to walk with Him. “Though I walk through the valley of the shadow of death, I will fear no evil: for Thou art with me…” Psalm 23.
Anyways, this went on longer than I anticipated, and maybe you’ve already tried all these things. But just know I understand how you feel, and hope and pray you can find more relief and encouragement