It’s been too long

I haven’t posted here in a very long time. Sorry about that. 

I’ve had a lot of issues with my health in the past few months. I have had ongoing issues with my back since 2013 or so. It all started with a twinge that wouldn’t go away, and then eventually turned into crippling sciatica. I had my first back surgery (when I still lived in NYC) to remove the portion of my herniated disc that was compressing my sciatic nerve. After that initial surgery, I was pain free for just shy of a year. 

Then last winter (around December) the pain came back, all at once. I recognized the pain for what it was, but let it stretch out for months, both because I let my doctor talk me into more conservative treatments that I knew wouldn’t work, and because I was scared to have another surgery. I had another MRI and it confirmed my suspicions – my disk had re-herniated. I was back to square one. After over 8 months of pain, I gave up and booked an appointment with a highly regarded neurosurgeon in Chicago (where I live now). 

He booked the procedure less than a week later. I got the time off work and went in to it very optimistic – it had worked before right? And this doctor was sure it would work again, and I’d be good to go. There was a very small chance, he said, that the disc could re-herniated again. But only 5%. Those were good odds to me. I had the surgery and from day one, it didn’t seem right. Unlike the first time, I still felt the sciatic nerve pain shooting down my leg. By the way if you’ve never experienced nerve pain, think about any time you’ve ever had a toothache. The pain is almost identical…only imagine it taking over an entire side of your body, and it almost never stops. Yeah. 

Anyway, they told me this was likely because the nerve was inflamed from being compressed for so long. They gave me some steroids and I went along with it. But it didn’t get better, only worse. The next week I called and told them that something was definitely not right. My pain was worse than it was prior to the surgery. They gave me a referral for another MRI. Guess what? The disc had already re-herniated. 

And now that the disc has herniated 3 times, the doctor will only move forward with a spinal fusion, and not another microdiscectomy. I spent about two days crying after I got the news. I felt like life was over. Fusion has a so-so success rate, and the way things are going for me, I wouldn’t be surprised if I ended up even worse off. I couldn’t imagine spending the rest of my life in this kind of pain. What would be the point? It was a rough couple of days…I was in a very dark place. 

But I’m still here. I have an appointment with my doctor in the morning. I’ll hear him out, but I’m not scheduling a thing until I get some other opinions. A friend of mine from grade school works for a neurosurgeon in St. Louis – apparently he rarely does fusions, especially on younger people, because the long term outcomes aren’t great. I’m going to get all my records and images and send them to her for him to look at. I have hope, even if just a glimmer. 

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One Comment

  1. I’m very moved by your post. Another kindasortatrans guy (with a weird twist) who struggled for years with back pain, ruptured disc. So first I will talk about bad backs. My bout, believe it or not was 30 years ago, and it went on for years. Unlike you, I avoided surgery by going to a no longer in existence holistic health clinic called the Shealey Clinic in Springfield, MO. There for two weeks. It was run by a guy, Norm Shealey, crack surgeon who became disillusioned with surgery, only used it as last resort. Instead he used everything else. In two weeks I was exposed to counseling, acupuncture, biofeedback, tens, yoga-like exercises, meditation, healing tapes and music. It was intense, but it turned my life around. Some of the stuff has stuck for 30 years. I ended up settling into a routine of gentle yoga, tai chi, meditation, weight control through diet. If I go even a single day without the back exercises, I notice it. I had to relearn how to sit, stand, lift, everything about posture. Now it is second nature after 30 years. I realize that everyone has to find their own path, and what worked for me won’t necessarily work for you. But the idea of a holistic rearrangement of my life and dedication to that saved me, I’m sure. If you want to read about some of my struggles with this, here’s a link.

    http://jandris.ipage.com/jimpers/diet.html

    and I put the exercise routine here
    http://jandris.ipage.com/jimpers/diet21.html

    Also the kindasortatrans thing. I am feminized male to male wannabe, but lately I’ve been making peace with the dysphoric parts of my body. Had the same so so experience with support groups, etc. Basically embedded in a cisgendered community of friends and relatives (and a husband). They love me, but what can they say? If you want to read a basic post on my blog dealing with an aspect of my struggle, here that is.

    https://jimandris.wordpress.com/2016/08/11/why-i-changed-to-jayms-on-social-media/

    In any case, my heart goes out to you on this back struggle, and also dealing with the body optical illusion that we dysphoric folks struggle with. There’s just no explaining it to those who don’t have that challenge. Best.

    Jym

    Liked by 1 person

    Reply

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