It's 3am, and I'm currently lying in bed, unable to sleep because of pain in both my legs. This is a bit long and I don't know where I'm going with this. I guess I'll just explain where I am at and if anyone has any advice I would be happy to hear it.
I am 30 years old. In July I had decompression surgery on L4/5. In January I started getting pain in my right leg when sitting down. My big toe had some muscle weakness as well, although that improved by the time I got to see a surgeon in April. The mri showed a 7mm bulge and a 10mm right sided extrusion. I also have a smaller spinal canal than an average person. The surgeon said I would probably need surgery eventually but it should be ok to wait as I said I would like to avoid surgery if possible. He suggested swimming. Not long after seeing the surgeon I started getting pain in both legs while standing up. It was annoying but bearable. After a month of regular swimming and working from home, I realised I needed the surgery. Unfortunately when I called to book in the surgery I found out the surgeon had just gone on holiday and I would need to wait another 6 weeks. I used the time to do Pilates to strengthen my back so my recovery would be faster. During this time the pain in my legs got worse, but there wasn't anything I could do but wait. So all up I had 1 sided leg pain sitting down for 6-7 months, and pain in both legs standing up for 2-3 months before surgery.
The surgery itself was ok, I wasn't in too much pain when I woke up, considering what they do to your back. It was a laminectomy/discectomy with no fusion. I was walking the day after the operation, and was let home after two days. I did notice some right sided sciatica happening when I was still in hospital, which concerned me as I was hoping it would all be gone straight away. The surgeon said 'the surgery went pretty well, we got good decompression. However you do have some nerve scarring'. This sounded pretty scary and I wasnt sure what it meant. He said it was normal to still have some sciatic pain at the moment and that the scarring meant I might need some time with a physio to get 100%, but it shouldn't be a major problem.
Back at home I started doing lots of walks, as I was scared of the things I read about adhesions on the nerves and wanted to avoid that kind of thing. I noticed that sitting down still gave me uncomfortable aches down my right hand side, which was worse than before surgery. Before it stopped hurting when I stood up, now it keeps aching for 30m - 1 hour after standing up. I also noticed my standing pain was still there. I found this discouraging as I have read that usually all the leg pain goes away straight after the surgery.
1 week after surgery I tweaked my back and had a really angry nerve on the right hand side for a couple of days. The pain started getting worse, most likely due to the surgery stuff wearing off and also me coming off some of the more intense painkillers. At my two week checkup with the surgeon he repeated that they were really happy with the amount of decompression, but I did have some scarring on the nerves. He said that it can take 3-6 months for the pain to go away. I asked if the nerve scarring meant it might not get better. He said that that it was a possibility but that I should be optimistic.
I have since tried to find out information about scarred nerves and have really struggled, the info all seems to be about scar tissue adhesions developing after surgery, and not pre-operative scarring of the nerves themselves. Regardless it doesn't sound great, as scarring is a permanent thing - it doesn't just go away.
at 4 weeks post surgery I realised I felt worse than before surgery, so I had an mri done to check if tweaking my back had actually reherniated it. The mri showed no reherniation, but the right nerve root was mildly swollen. There was also enhancement on the edge of the disc and to the epidural tissues to the right of the thecal sac. I wasn't sure about the enhancement part, I think it is scar tissue related?
I started seeing a physio at 4 weeks post surgery. He didn't know what the surgeon meant by nerve scarring (neither did my GP). He was confident that all my pain would go away. He didn't see anything in the mri that concerned him, and said that I should be able to sit/stand comfortably by 8 weeks or so, once the swelling died down. I am seeing him weekly for back massage and stretching. He also gave me stretches to do at home. My range of motion has improved and my incision area feels great, however there has not been any improvement in the leg pains at all.
It is now just over 2 months post op, and the pain in my legs is worse than ever. This last week has been especially bad. Any amount of walking seems to flare the pain, and all the stretches seem to aggravate it too. The pain is a sharp/burning sensation in the outside of my calves. The right side is a lot worse than the left. I have also noticed the right side is incredibly sensitive to pressure. There's a small spot where if I even push the muscle gently I get nausea from the amount of pain.
Tonight is the first night where the pain is keeping me from sleeping. I have generally been pain free lying down on my left hand side, so sleeping hasn't been a problem until now. But the calf pain is almost unrelenting at the moment.
I've read that if the pain is getting better by 3 months it will keep getting better, but if it isn't then it's probably a failed surgery. I can't imagine it improving in the next 4 weeks so I'm trying to come to terms with the fact that I'm probably one of the unlucky ones who doesn't have relief of leg pain from the surgery. 6 months doesn't seem like long enough to have permanent nerve damage, and I only had this leg pain for a couple of months before surgery, but if I had scarring on the nerves then that sounds like permanent nerve damage to me. I keep going over my choices along the way, and I regret not choosing to have surgery sooner when I only had pain sitting down. It was also plain unlucky to have a 6 week delay from my surgeon going on holiday.
I've started taking lyrica the past couple of days to see if that gives me some relief. So far it hasn't done anything but I'm still on a low dose - 50mg x2 per day. I also take antinflammatories. I'm pretty sure I suffering from depression. I hate thinking about going through life for another 40-50 years with this pain. I'm not suicidal, but I feel like death wouldn't be a bad thing if it happened. It seems so peaceful right now. Anything to get away from this pain.
The physio remains confident(ish) that the pain will go away. The GP thinks I should wait a year before worrying about the pain being permanent. If i could get rid of the burning pain in my calves at least, I could put up with not being able to sit down. I currently only sit down on the toilet, and I only go in a car to get to the physio. I could walk to work, get a standing desk etc. but the calf pain is almost constant through the day and now it's hurting lying down too, I don't know how much more of it I can put up with.
Is there anyone who had this much pain at 2 months post surgery, who had a decent recovery afterwards? Has anyone been told by the surgeon that they had nerve scarring? (Not scar tissue enveloping the nerve but scarring of the nerve itself). Has anyone had an incredibly painful/tender area on their leg? Did the area change over time?