So I posted here after I got my spinal tap a few weeks back and I really wish I never got it. All it has done is cause more issues.
I had a bunch of hip and pelvis pain after it but I’m not gonna focus on that for this. My spine ended up not healing itself so for a week and a half before the blood patch I was experiencing the worst headache that I knew could actually exist, draining sinuses, eye pain, shoulder pain, more nerve pain into my shoulders and arms, and this raw indescribable pain in the back of my neck and between my shoulders that felt like my spine was being crushed. I was so uncomfortable. Having spinal fluid leaking makes your entire body feel so completely abnormal and wrong. I don’t how else I could describe it. The only good that came out of it was that I was sent to the hospital for an emergency mri by my neurologist due to symptoms of a hematoma. That’s not the good part, I had to spend the night so the next day I talked to a lot of people and I was talking to this woman there and she really wants me to see a neurologist at that hospital so I was able to get a referral to see them from my paint mgt doc. My current neurologist is currently moving to a new clinic but its too far away from me.
So I got a blood patch just over a week ago and that came with it’s own issues. Before the dude started he told me that if I feel any nerve pain in my hips or legs to tell him because it can cause permanent damage. I felt it, bad. We had to let the blood settle 2 times because it came on so I told him. As he was pushing the blood in I could feel the pressure build up in my spine so I could feel how fast he was going. After we waited the second time I gave him the go ahead. I honestly think he messed up and pushed too fast because all of a sudden I felt a ton of pressure build up and then the nerve pain hit me like a ton of bricks. It was so bad. For 3 days straight I had non stop nerve pain. The only wait I can describe it is as if some is constantly pulling on your leg really hard and stretching your nerves.
It has calmed down since then but it’s not gone. If I make a wrong movement or just am up for too long my hips and legs down to the bottom of my feet will start hurting. Not only that but the blood patch didn’t even fully work. I’m a lot better off but my sinuses are still draining a bit, I still get a headache from being up, eye pain, shoulder pain, still worse nerve pain in chest shoulders and arms, and between the shoulder and back of the neck spine pain is still there constantly. Don’t get me wrong, it’s better, but it’s not gone. Not only that but around the area where I got the blood patch and spinal tap will start hurting if I move too much. All my muscles in my back are also extra tight.
This whole thing just caused so many issues it’s so frustrating. I really wish I never got it. It’s just so frustrating because such a “simple” procedure has caused so many damn things to go wrong and I’m just straight up not having a good time.
The back of neck pain and between the shoulder blade pain is so incredibly annoying. Well actually all of it is but that part is what bothers me the most because holding my head up is just such a task. Not to mention I already have a bulging disc back there so I can only imagine less spinal fluid is only making it worse.
Editing this real quick to add something. So I get full body twitches since my issues started but only when I relax. For example when I’m in bed my arm, hip, legs, etc. will twitch. It’s a big twitch too, not a small one. It can move my entire body. Here’s the odd part that I have no idea what it means, before my blood patch my body completely stopped twitching. I had 0 twitches for a week. As soon as I got the blood patch and got home and laid down my body started to twitch again. I have no idea what it means but it’s something I noticed
Holy shit, my friend. I don't fall but sometimes I get the strangest sensation when walking, like the certainty that I'm doing Walking wrong somehow and what I'm doing is Not How Walking Is Supposed To Work. If that makes any sense at all.
When I tense up, I tend to notice when I reach the point of my back is arched up as high as I physically can. I've literally changed position from normal laying on my back to what it looks like when you see someone get hit with a defib on tv. Without even being aware of it. Stupid muscles.
Percocet was my jam when I was going through chemo. I think I was probably high about 90% of the time for a full six months, which was infinitely better than chemo pain. I'm taking gabapentin 600 now, mostly just to control the pain from my sciatic nerve. I did a steroid epidural last year which knocked out that pain completely for a solid year, but now that it's worn off my spinal surgeon doesn't want to do another one until we find out what else is going on. I understand that, but also pain! Ugh.
You're super young to have all this going on. I'm almost twice your age. I hope they get some answers for you soon and a reasonable pain management solution. Have you tried pot? Idk what the laws are like where you are. I have my medical card so I can get it, but it's all out of pocket because insurance won't cover it. It has helped me some, but it's hit or miss.
Yeah I use CBD,CBG, and THC every night. It helps but I’m useless when I’m high lol. I use it for bed. I would rather be on percs cause hydros make me so tired. Like they give me the “nod” halfway through my daily dose and I’m just trying to stay awake at that point. They also get me high which is nice to take my mind off everything but I’m still in pain. But better to be high and in pain than sober and in pain when the pain is like this I guess. I might just be sensitive to opiates since like 15mg on hydro can get me pretty high and also 10mg of the percs made me really high. The percs in the hospital didn’t make me tired though. They kept me aware and I would rather have that. I also take the muscle relaxer tizanidine and the hydros just feels like a stronger and more full muscle relaxer. But who am I to complain, I’m actually getting stuff to help my pain.
Damn it sounds like you’ve been through a lot and beat cancer hopefully from the sounds of it???? Do you think it’s possible you’re just overthinking walking? I do it sometimes since I know my legs like to do weird things.
When it comes to the back arch I totally know what you mean. When I’m laying in bed sometimes I’ll notice muscle pain and then I realize you could fit a baby between my back and the mattress.
My pain management doctor actually wants me to talk to my neurologist Tuesday about steroids nerve blocks. I have a bulging disc in my neck and thoracic spine and she wants to try it there. My arm nerve pain is very annoying. It goes down my neck, under my collar bone and into my arm. It’s annoying.
I’m open it to but I want to figure out what’s going wrong first. She also wants to block the nerves for headaches because it still feels like my brain is getting beat up from my dumb spine leaking fluid but I also feel like I need to get that fixed correctly and be able to know how bad the pain is and feel it since this is from spinal fluid leaking and that ain’t good.