Just over a week ago I woke at 3am in agony. Horrible pain, down my left side. Different to the usual rheumatoid arthritis pain, this was nerve pain. And it was far worse than anything I’d ever experienced before.
I have known for a long time that my spine is severely degenerated. I have severe spondylitis and marked facet joint arthritis at all five lumbar levels. I’ve had herniated discs before, and they heal in time. But right now I have three herniated discs, at the bottom three levels, and at the S1 level, the disc contents has extruded and is impinging on the S1 nerve root. As I result I have partial paralysis of my left leg, and severe pain.
I also have spondylolisthesis at L3/L4. L3 has moved forward over L4, creating moderate spinal stenosis.
There are also bony endplate changes, several perineural cysts and something called a joint recess/ganglion of the facet joint.
It’s a long report, and there is a lot of pathology there, but what it all means is that there are many points of nerve impingement, spinal instability and stenosis, so there’s just not enough room for my nerves to travel freely.
Hence a buttload of symptoms.
Over the last week, the pain levels have decreased. For the first few days, it was honestly some of the worst pain I’ve ever experienced. It wasn’t shooting, it was constant, horrible, cramping, electric, deep and sharp. Now it is less severe, but still constant.
Initially I couldn’t put any weight on the foot. I had pain in my lumbar spine (as always) but also in my buttocks, back of the thigh, behind the knee, the calf muscle, down into the foot. I had numbness in the foot, and all down the outside of the leg. My buttocks were also numb, and the ‘saddle’ area was numb too.
When I started experiencing urinary retention and then incontinence, I went to the doctor. She treated my like a drug seeker but my pleas for an MRI were answered. I followed up with my usual GP and she sent me straight to the ER.
They ignored me, and I was referred to a private neurosurgeon. He has made time during his lunchbreak to see me on Thursday.
He is concerned because I have drop foot, meaning I can’t lift my foot. It just hangs. I also can’t raise my bodyweight onto tip toes on the left side.
These are very bad signs, apparently. It means the nerve is completely compressed and non-functional. If its not released soon, the paralysis will become permanent. Even now, it may be permanent. I just don’t know.
I don’t want to live with a partially paralysed and very painful left leg forever. I can’t walk unassisted. I can now put a little weight on the left leg, but I need crutches. I can’t get up and down stairs, thank the gods I installed the chair lift when I did. Essentially, if this doesn’t change, I will be in a wheelchair permanently, rather than part time.
That will be a huge change to my life, and I don’t want that.
But…I can’t face surgery. And surgery is my only hope of recovery.
So I’m in a pretty bad place right now. I am looking at permanent paralysis. And far greater disability that I have experienced before.
I can’t quite believe this has happened. I would not have bought this house had I known that I would lose the function of my left leg. Using the stair lift part time was an acceptable choice, using it constantly is difficult.
But again, I made the best decision that I could make at the time. I did not expect this to happen, but it just goes to show how quickly things can change in the life of someone who is chronically ill and disabled. From one day to the next, your abilities, your life, can change radically. Unfortunately, not in the direction I’d hope.
If I don’t get my left function back, I will be a permanent wheelchair user. That’s a big deal.
If I don’t get my left leg function back, I will never go to gym again. I won’t ever jog/shuffle again. Before it was severe pain that stopped me from doing a slow jog. I could accept a certain level of pain so as to meet my fitness goals, to keep my heart healthy, to be cardiovascularly fit, because I have coronary microvascular disease (cardiac syndrome X) and keeping my heart in shape is very important. If I want to stay alive for a long time, anyway.
Now I won’t be able to do that anymore. I have no idea how I will keep myself vaguely fit. No idea at all. That will have a huge impact on my life expectancy.
Not being able to do any kind of meaningful exercise will have a huge impact on my happiness. Gym is my happy place. I enjoy it, and I enjoy knowing that I am fighting for my health in the gym. Despite ever decreasing ability, I have still been able to get myself to gym, albeit in bursts, between severe flares that last a few weeks. Then I get myself up and back to gym, and back to work.
And now…that may be over. If so, it will be a huge loss, one of the big ones. Not as bad as losing my husband, but far worse than losing my hair.
I won’t know until Thursday. I know that I need surgery. I don’t know that I will be able to have the surgery. The PTSD from the hysterectomy and the damage done by doctors, nurses and friends around that period runs deep and is still a strong force in my life.
But I need to find out the potential consequnces of NOT having the surgery. Obviously I won’t get better, but will I get worse?
And I need to know that chances of success. Will I put myself through hell for surgery, if there is only a 50% chance of regaining the use of my leg? I don’t think so.
I’m having a cortisone shot into my left S1 on Monday. I hope that might tame the inflammation down, maybe relieve some pressure on the nerve. It’s possible.
And apart from that, I need to put it out of my mind, and be grateful that I do have a wheelchair, and I can get around my house at least.
There is nothing I can do until Thursday, but hope for the best.