Post by bindicoot on Jun 16, 2017 2:22:52 GMT -8
I'm new to the forum and relieved to have stumbled across you.
Currently I'm 6 weeks post op for cauda equina.
I had nearly 2 years of lower back pain and right sided sciatica, I kept as active as I could holding down 2 jobs and pushing through the pain which no amount of painkillers thrown at me by my GP seemed to remedy.
I was waiting for my MRI results which I had to push and push for, MRI was done on the 18th of April and 10 days later I found myself waking up to go to work with my legs hard to control.
I continued in work, struggling to walk and my usual pain was hardly bothering me (I just put it down to my back playing up), by the evening and returning home, I found I couldn't feel myself when wiping so at this point I called for an ambulance and was taken into hospital that evening.
They had my previous MRI results at hand and this coupled with the symptoms I was showing meant they made a quick diagnosis as they could see the disc had clearly progresses from the earlier scan, at this point I had no rectal tone, absent reflexes and numb legs but I could still feel the need for the toilet and had no problems going (just the same numbness when wiping)
The following morning I was airlifted to a hospital and surgery was performed around 36 hours after onset of symptoms.
After waking up, no one mentioned cauda equina and it wasn't until a week later that a physiotherapist told me what had happened and how much of an emergency it was, I just thought that the disc that was originally bulging had just caused a slight problem, it's crazy the damage a little thing can do.
After surgery I couldn't feel below my waist apart from my big toes, I could move them but struggled moving my legs as they felt so heavy, I also had a catheter as they wanted me to lie on my back for several days.
I was allowed to go home to begin my recovery 2 weeks later and I have made good progress however I haven't spoken to my consultant yet so I'm still unsure what the extent of the damage was, which is scary and makes me feel very uncertain about my future and what possible recovery I can hope for.
I now have feeling in my left side apart from a few patches with reduced sensation in my left foot, mainly the side and two outer toes. I have a strip down the back of my right buttcheek that goes down to the calf that is fairly numb, and my right foot has the same issue as the left, the ankle is quite weak at the moment also.
I regained the feeling in my groin and sexual function with the ability to orgasm, it's different than before but I'm okay with that, I also have a small amount of control over rectal tone.
My muscles are very weak and wobbly so I'm currently attending physiotherapy, hydrotherapy and have just started in the gym today, I use crutches for now as I want to try and encourage that "push" off with my toes that is hard without crutches.
My reflexes were checked this week and have made a small improvement, knee reflexes are intact and ankle reflexes are faint but present.
Bladder and bowels are confusing for me, I am emptying my bladder completely and get a heavy feeling when I need to go, but I'm not sure if that has changed over the last few days (I can't remember what it's meant to feel like to do a "healthy bladder pee"), I find I'm able to hold it for longer comfortably and have no issue with incontinence or weak flow etc.
Bowels are a constant confusion for me at the moment, as everything has slowed down including how much activity I participate in, so have my bowel movements! I was a 3 times a day kind of gal and now I go maybe once a day, I can feel when I have gas and I think I can feel when I have to go but the muscles that would allow me to push just don't seem to be working and I find it hard to tell when I'm done or sometimes, if there is anything in there until I check. As with the bladder, I've had no accidents but im just confused about this whole thing and what's going on in my body.
I don't know if anyone is able to offer any advice or expectancies, I know each injury is so different and almost impossible to predict an outcome for.
A few things bothering me;
The fact I had a reduction in pain on admission to hospital, my regular pain was probably around a 8/10 but this was diminished. Whereas I seem to read that most get the excruciating pain when cauda equina happens.
I know that incontinence and retention upon presentation are generally thought to be linked with a poorer outcome, but do the other symptoms you present with have any correlation to recovery, for example, my having weak legs, does this mean the damage was done at that moment and is irreversible much like the bladder and bowels or is it different.
I've been told that the fact I have changing sensation in my feet is positive and that it should settle down, some days my feet feel normal, some days they feel tight and tingly and then occasionally I get many different feelings which aren't too painful as I've seen some suffer with, but more uncomfortable, again when I was in hospital I was told this was nerves healing.
Is there a link between me getting my saddle sensation and sexual function back and potential for bladder/bowel recovery or is it not linked at all.
Sorry for the long post! I'm so confused and scared and I just don't know what to expect, I'm trying to take each day at a time and I know how lucky I've been with my recovery so far, but it's torture just not knowing what will happen to my body.