Hi everyone, I'm new to this site and hoping to maybe find some people in a similar situation. And maybe some support.
I'm 19, and used to be really active. I played field hockey, rugby and competitive ice hockey as well as volunteering with a youth mentorship organization in my community. I was diagnosed 2 years ago with 2 large disc herniations L5-S1 and L4-L5 and went through 1.5 years of physiotherapy and acupuncture, as well as 2 MRIs before undergoing a 2-level "open" (not laparoscopic) discectomy about 3 weeks ago.
After the surgery, I felt good initially. No leg pain (Prior to surgery I was taking hydromorphone 6x a day for pain in my butt, legs, knees and feet as well as about 20 extra strength Motrin. I am an undergraduate university student in a competitive limited enrollment program with 50-58 hours of class a week) and I was able to manage at home on only percocets and lyrica after 4 days in hospital (I had severe reaction to the anesthetic that affected my heart and breathing). Post-op there was also no sensation or reflexes from my left knee downward and a severe foot drop requiring the use of a walker and AFO (hence the name 19goingon90, because most days that's how using a walker makes me feel </3). Since the operation I have fallen 3 times due to the lack of sensation in my foot causing me to literally trip over my own two feet. The surgeon promised me it was temporary and that once the swelling had gone down it would resolve itself not to worry. I also am severely allergic to adhesives and as such my surgeon says he cannot identify the difference between swelling from surgery and the blistering swelling caused by the adhesive in the tegaderm dressing.
Two weeks post-op, my incision opened and was bleeding and I went back to my surgeon who said it was an infection and a hematoma but that he wasn't concerned and removed all the remaining staples anyways (I had 32, 5 of which had ripped open on their own). He prescribed an oral antibiotic for a week, however the incision is still draining nearly 4 weeks post op. I was concerned about scaring, but there wasn't a great deal of pain (relative to pre-op) so I was okay following his advice to take it easy and let my body heal.
Now, nearly 4 weeks after the surgery, my incision is still not healed and has opened further. Also I am starting to have spasms in my back and the returning of the pain in my hip/upper leg as well as shooting nerve pain in my feet and toes. I still cannot walk without a walker and the AFO, and even then only a few feet without excruciating pain. As a result I haven't been able to sleep more than an hour or two at a time, and only when the Percocets make me dizzy/tired.
I'm beginning to worry about my surgeons laisez-faire approach, and that the surgery, may not have worked at all. I'm really frustrated and upset with the lack of progress and the pain is now keeping me up at night despite the Percocets. I was hoping to be able to work this summer, or at the very least be able to sit through going out to a movie or for dinner with my friends. Most days now I just struggle to even get out of bed-part of it is pain, but mostly it's a lack of motivation and frustration. I work with the Canadian Mental health Association's youth program, and I am well aware that this behaviour is troubling (in terms of depression) but I'm at a bit of a loss.
I'm just wondering if anyone is in a similar situation and has any suggestions for ways of communicating better with my surgeon or pain management tips. Because I'm so young (and can't drive..) my mum (a nurse) comes with me to all the meetings with surgeon and as a result the surgeon tends to talk more to her than me when asking questions. I'm not very good at speaking up for myself and am pretty shy, but I'd really like to be able to have a conversation where my fears and worries aren't dismissed outright.
If anyone has ideas..or just wouldn't mind chatting or something..it'd be great. My friends are trying to be supportive, but they don't really get it to be honest. They either avoid me, or treat me like an invalid, and it'd be really nice to know I'm not alone.
Thanks for reading, sorry for the long post and taking up space on the forum...