Last week I saw the neurosurgeon to get his opinion on what should be done for my left leg paralysis, numbness, calf weakness and drop foot. I went in there with much trepidation. I’ve read the report, I’ve googled, and plain old common sense tells me that he is going to recommend surgery.
Due to my PTSD related to my last surgery, the hysterectomy from hell, I don’t think I can face surgery.
But…my leg is very painful. Worse than that, my foot is still dropped (though it has improved on what it was) and my calf muscle is completely paralysed. I can’t push off with my left leg at all, and so I walk with a very pronounced limp. Running or jogging is impossible – you can’t run if you can’t push off with your foot. The limp means I can’t walk far, even walking a little way is exhausting and very painful. And the lack of strength on the left forces me to compensate on the right, causing more mechanical problems. A cane doesn’t help, but crutches do. However, crutches are awkward and clumsy, and also tiring to use.
So that leaves me using a wheelchair more often than not.
Life is harder in a wheelchair. The world is not as accessible as it should be. There are many places I can’t go in a wheelchair. Apart from that, I am still waiting on my new chair and power assist. I don’t have the upper body strength anymore to self-propel. And my shoulders have degenerated, I need surgery on both of those too. But that can wait.
I don’t want this leg problem to be permanent. It has a significant impact on my quality of life. In a negative way!
The neurosurgeon was kind, and calm. He was sympathetic about my medical history, the inflammatory arthritis, peripheral neuropathy, adrenal insufficiency, bleeding out after the hysterectomy, he got all of that in a 15 second blurt. He took it in stride and gave me his opinion. So, this is what he said.
I have three separate pathologies going on in my lumbar spine. Most significant for my current pain and disability is a herniated and extruded disk at L5/S1. The disc has torn and the contents have spilled out into the spinal canal, and are compressing the S1 nerve root. That compression is what is causing the numbness down my leg, the weakness in my calf and the pain in my buttocks, back of thigh, calf and foot.
At L4/L5 there is lateral recess stenosis and nerve impingement on both L5 nerve roots (which explains the pain down my right side as well, but nowhere near as bad as on the left.)
AT L3/4 “there is a degree of facet joint incompetence with a Grade 1 spondylolisthesis and again lateral recess and canal stenosis.” Along with another herniated disc.
I have marked facet joint arthritis and spondylosis at all five lower levels, and all three lower discs are herniated, but L5/S1 is the worst.
So basically, my spine is a mess. It does explain all the pain, the pain that I have been dealing with for almost ten years. Now that things have degenerated enough that I can’t walk, I need surgery. The only upside is that its nice that they finally believe that the pain IS that bad.
Firstly, he said that the spondylolisthesis is mild at this point, but these things only go one way, and that’s downhill. So in the future…a year, two maybe? I’ll need to have a major surgery on my spine. He led with the bad news, and told me that I will have to prepare myself for a major spinal surgery at some point. He will need to fuse the bottom three layers, L3 through S1. It will be a six hour surgery, and a 12 month recovery. He needs to use a cage to stabilise the spine at all three levels and break the joints to encourage the bones to fuse together as they heal. It will be a painful surgery and a painful recovery and after the surgery I will have significantly less mobility in my spine. I will notice a lot more stiffness. Pain may or may not be improved.
Multilevel spinal fusions are not good things. Some surgeons won’t even do them, because the outcomes are so generally poor. Only about 50% of people get a sustained positive outcome. For me, it is the only option though.
He couldn’t answer what would happen if I DON’T have the surgery. He just said there will come a day when the pain and numbness from compressed nerves and degenerated joints will force me to have the surgery.
So, cool. Something to look forward to…
For right now, he suggests I have a discectomy, and possibly a laminectomy. He’ll clean up the herniated and extruded disc, relieve the pressure on the nerve, and clean up the spinal canal at S1/L5. Once the pressure is off the nerve, it should heal faster. It’s a relatively simple surgery, 1-2 hours under anaesthetic. Low risk of bleeding.
But…there are no guarantees. All the surgery is doing is providing the best possible environment for the nerve to heal. In 25% of cases, the nerve doesn’t heal, feeling doesn’t return and the pain and electric shocks remain, with or without surgery.
I told him I was terrified of surgery, and he was very reassuring. He took a lot of time with me, explaining, answering questions…he didn’t rush me at all.
The problem is, there is no way to know if the surgery will help. The surgery gives me my best chance at a complete recovery, but there is no way to know. The nerve may not recover, equally it may recover without surgery. Because bladder and bowel function have returned to normal, it is entirely up to me, my choice. He recommends surgery, but it is my call.
He said it would be easier if the bladder compromise was still an issue. Decision made. He also said that I could come out of surgery, and a week later, one of the other herniated discs could become worse, and compress the next nerve. There is simply no way to tell. My spine is in bad shape, certainly extremely bad shape for someone of my age. He said he doesn’t see this much damage in a spine so young very often.
He noted my anxiety and stress, and suggested I take 4 weeks to do physiotherapy and exercise and see if my leg improves. He said taking 4 weeks is fine, the surgery can wait that long. There IS a point though, after which surgery will no longer be an option. He can’t say when that point is…but he suggested somewhere around 2-3 months.
I had a cortisone injection into L5/S1 and it did help, I have more movement in my foot. My calf is still totally paralysed though, and it is disabling. I don’t want this to be a permanent condition. It is life changing.
If this is permanent, there are a lot of things I enjoy doing that I will never be able to do again. That’s weighing on me, heavily.
But…I can’t face surgery. Every time I think about it, I feel extreme anxiety. I can’t imagine allowing anyone to anesthetise me. I’m terrified of waking up and not being looked after, of being left in agony again. Being ignored. Being abandoned. Not only by medical staff, but by friends as well. Its impossible for me to trust now, because of my ex-friends. I believed completely that they were close friends, life-long friends. I loved them, I believed they loved me too. But they didn’t…they were able to treat me most brutally, without a backward glance.
And if I couldn’t tell how they really felt about me, how can I trust anyone?
I know intellectually that the people around me now are different. They are all old school friends…somehow its easier to trust people from 30 years ago, despite having only reconnected recently. Somehow it’s easier to trust people from a time when life was simpler, people seemed kinder, people *were* kinder.
I’ve had several nightmares where I wake up after surgery and I can’t speak and I can’t get anyone’s attention and I feel myself dying. I’ve had other nightmares where I watch myself die in surgery. I wake up sweating and terrified and it seems so real.
I have called Dr Mike and I’ve booked more sessions. I need some more intensive therapy, time, talking. I don’t know if I can do it. I am truly caught between a rock and a hard place. I swore I wouldn’t ever have surgery again, unless my life depended on it. My life doesn’t depend on this surgery, but it has a huge impact on my quality of life. I can’t quite believe that, less than a year after the hysterectomy from hell, I have THIS choice on my hands. It seems…implausible. Unfair.
I still have two weeks until my second appointment with the surgeon. I will take all of that time and try to come to terms with the idea of surgery and come to a final decision. If I go ahead, it will be done within a week or two. There won’t be a long wait.
And if I don’t go ahead, it will be a long rehab. It will be, either way.