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
Ahhh a fellow human mystery!!! I don’t remember how my twitches started but it’s my whole body now. My neck will even twitch. When I’m watching tv my head will swing to the side real quick. My arm will also do a little flop or something. You get it. Muscles in my body are tight everywhere. Very painful. My legs will also give out on me randomly. I don’t fall to the ground, I am able to catch myself halfway down but it’s like my leg muscles just stop working randomly. Even my chest muscles and muscles around my armpit cause issues, just weird. My legs will also “cogwheel” when I put them in the air and move them. I don’t have Parkinson’s or anything but they do it for some reason.
It’s funny you say that cause the neurologist I got referred to is a movement specialists. I got an emg done on my legs and it had abnormal results. My tibial nerve in both legs below my knees had something wrong. Muscles weren’t working correct either. For example in my left thigh some muscles just straight up were not contracting when they should’ve, and in my right thigh muscles were contracting that shouldn’t have been when moving my leg. So it’s really odd. My neurologist said on the chart for my muscles it was “poly” as in instead of looking like a heartbeat when my muscles contract theres was multiple ups instead of one. I had an emg done on my arms but that was normal. I think it might just be specific to where the emg is done.
After the emg I went and got a whole lotta blood work done and everything was fine. Next step was spinal tap. As far as I can tell the spinal tap results are normal, but I have my apt on Tuesday. Otherwise it’s just a muscle and nerve biopsy I need to get done.
I’ve had MRIs of my entire spine, and brain and everything is all good. I did have fluid in my spine when I got sent to the hospital the other week but that’s irrelevant to this. As of right now there is absolutely no reason this is happening. This started a year ago for me and it all happened because I dislocated my jaw and then got TMJ and things just went downhill from there. Since then I haven’t done anything. It’s all too painful for me. When I walk too much it feels like my hip muscles are pulling off the bone every step and then my back gets tight then shoulders and then everything just hurts so bad.
I’m in pain management rn and I’m taking 400mg Lyrica a day and 30mg of Hydrocodone a day. 200mg Lyrica 2 times a day and 7.5mg hydro 4 times a day and it helps, but I’m still in pain. When I was in the hospital they gave me Percocet and that helped a lot more than the hydros. I talked to my pain mgt doc and she seemed opened to it but when to max out hydros first which I understand. I’m only 25 also and it’s all just terrible 😔
Edit: also want to add my legs are hyperreflexive
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.