Today…the neurosurgeon that my no.2 GP referred me to called today. I was pissed because I couldn’t get an appointment until July, because that’s freaking criminal. But I was relieved, because the decision is taken out of my hands. He came in today and reviewed my scans and has made time to see me on Thursday, in his lunch break, because my case can’t wait. He said that the longer those nerves remain compressed, the less likely that they are to recover. As it is, there’s a possibility that I will never regain full function and feeling on my left side. It’s not like the stroke, the brain can learn new neural pathways, can re-learn how to do things different ways. Hard work and perseverance go a long way. But when a nerve is dead, its dead. He said he will discuss the chances of success on Thursday. But it means surgery. My only hope is surgery. And without surgery, this will likely progress, its not like I can just leave it and accept it.
I’m caught between a rock and a very hard place. Or rather, I’m caught between physical disability and mental disability. Which is easier for me to fight? Which one can I overcome?
If I CAN face surgery, what would it take? An advocate. Someone to be with me from start to finish. Someone who knows me and knows what I look like when I’m in pain. Someone who believes me when I say the pain is a ’10’ and knows that I have think I’m DYING to say ‘10’ or even ‘9’. Someone who will answer my cries for help. Someone who will respond when I say ‘Help me’. Someone who can’t stand to see me cry. The friends I had previous quite enjoyed seeing me beaten me down to bottom, and crying. She said that she’d never seen me in such bad shape before. And then she left, and stopped answering my facebook messaged, apart from small talk.
So no friend. My mother is of a generation that bows down to doctors, and thinks they are gods. She is unable to protect me, or look out for me for many reasons. I am going to approach friends. See who might take it on. I know intellectually that the friend that stands by me through this surgery is NOT the same person/people who let me die after the last surgery, who abandoned me to make a point. I know this. But my heart races and I feel like I am in a life and death situation just thinking about being in an operating theatre, that moment just before the anesthetic, when I said to my anesthetist “ you won’t forget the post-op steroids, will you?” and he assured me he remembered my Adrenal Insufficiency….and then didn’t order post-op steroids.
Even the best friends in the world can’t protect me from negligent doctors. No one can protect me from accidents…bad luck.
BUT. Assuming I make it to the recovery room…I need a person in the recovery room. That’s normally not allowed…but I will need someone there. Someone I know and trust. Someone who cares what happens to me.
And then I need someone to be there during the recovery. The surgery itself is simple. Most likely a laminectomy, to make more space. L3 is overlapping L4, so maybe that needs a fusion, because the joint is unstable. I have torn discs at l3, l4, l5/S1. It’s at l5/S1 where the disc extrusion is compressing the nerve and causing the paralysis of my left leg. So clearly he’ll need to do a discectomy and clean all that up. The last neurosurgeon I saw, two years ago, said I had too much damage, too far gone, couldn’t fuse that many levels. So I wonder. Will this guy want to fuse my spine? What will THAT do to my mobility? Does he not care about the consequences of fusing 3 levels, cos I’m not at all likely to make it to my 80s? Whatever. I’m putting that out of my mind until Thursday.
But I’m not exaggerating. My spine is a total mess. It should NOT look like this at 47. And its looked like this for many years…it was just waiting for something to push it beyond management. I’ve had severe pain in my spine for more than five years…it wasn’t ‘if’ it was ‘when’. The pain is WHY I do so much core work…strengthening, working on keeping myself functioning. And it hurts like a mo-fo. And I have smiled through it and gone back to gym and worked some more.
And that’s WHY the stupid GP the other day dismissed me. Good muscle tone, good core strength, no way could I be in the pain I said I was in. She has called several times, telling me I need to see her URGENTLY. I called her back today and told her receptionist that I was following up with a different doctor because she didn’t believe me on initial presentation, and I don’t feel comfortable with her. SHE needs to know that! She needs to learn that her preconception of what a person in pain looks like caused her to treat me like a drug seeker, and had I not BEGGED for an MRI, she would have missed some serious pathology and a disabling spinal lesion. I hope she gets that message.
Better to give an addict a fix than allow someone to become paralysed and permanently wheelchair reliant, wouldn’t you say? But no, not in this world. Not in this day and age.
Anyway…I’ve lost my train of thought. Sum up…severe facet joint arthritis at all five lumbar levels, severe spondylosis. Three herniated disks, the worst at S1 causing foot paralysis, L3 has moved anteriorly over L4 causing stenosis and possible impingement, multiple perineural cysts….its a very long report.
What it means is that I have a left drop foot. I can’t walk unassisted. I have numbness all down my left leg, the outer side, some on the internal thigh, around the ‘saddle’ area, my foot is numb. I have pain in the buttocks, behind the thigh, behind the knee, the calf muscle and if you stroke the underside of my foot I get electric shocks right up my leg. Its truly horrible. It is one of the worst pains I have ever experienced. But of course the drop foot is the big problem.
I did have incontinence issues, but they have resolved. If they return, the neuro told me to call and ambulance and tell them at the ER that I am his patient. And he will come and see me. He seems to care. Makes a nice change.
I can’t lift my foot. I can’t raise my body weight to tip toes…very easy on the right, absolutely impossible on the left. And that’s why I need surgery. But I can’t have surgery.
So I am leaving all of this alone until Thursday. I know that this is not good and I am not exaggerating. I am a horrific optimist. I always give the very best case scenario, and I believe it. Most people look at the worst case, I don’t do that. I do not stress about something until it IS A THING. I don’t post about it until it IS a thing.
My choices are surgery, or a numb, non-functional, constantly painful, left leg. Most people would just choose surgery, especially a fairly minor (as I understand it) surgery, but given what happened last time, I don’t know.
Dr Mike is away.
I am focusing on my studies. I don’t know how to talk about this. I am realising the full extent of my inability to trust, to depend on someone, to need help and not expect to be betrayed. My ex-friends have changed me, and that’s the last thing in the world I wanted. I don’t want to change. I want to be who I was. But I am not. Some hurts run too deep. I HATE that they did this to me, that I let them, but I don’t know how to get through this one.
So I have been studying. I have caught up on all my assessments. I did my exams. I’m running at an average of 92% and I’m half way through the course. Its hard work, but it’s a brilliant distraction. I know that the self-imposed isolation is not good…but I can’t help it. I have nothing to give anymore, and I have to protect myself. I have some really good people around me, but I’m not sure how to move forward. How to approach. How to be close and be safe. Isolation and protection.
So study is good. I’m doing so well because the course is Anatomy and Physiology. A lot of it I have learned in the course of chronic life. I know a lot about the way the body is supposed to work…while researching why mine doesn’t. So there’s an upside. I’m half way through. I’m a week behind in coursework, but I’ll catch up this week. In amongst the cortisone shots, NDIS appointment, neurosurgeon consult and an orthodontist appt for the Chicklet. And then the school holidays will be over and once again will have done nothing with the kids.
But my course is great right now. It is keeping me distracted. It is keeping me sane.