4 months – still worse, no improvement.

It’s been nearly 4 months since I had surgery, I wasn’t expecting to be miraculously better however I was not expecting to be worse.

For the first 2 months I was over stimulated which was agony but that eventually got sorted out and the program changed to be much lower. The allodynia (nerve pain) that I had developed from the overstimulation went away thankfully, however underneath that nerve pain was a headache. My ‘normal’ headache has always been located at the front of my head; my forehead area and just reaching around to my temples, it’s never changed location and I never had pain at the back of my head. Since surgery I have been experiencing a lot of pain at the back of my head, the sides of my head and even behind my ears. It feels like my ‘normal’ headache has grown a friend or doubled in size.

The stimulator is on so low that I cannot feel it, because if I feel it my head actually hurts more. I was told that I needed to be able to feel the stimulation slightly in order to eventually reap any benefit. However feeling it causes me more pain so at the minute I’ve opted for having it on but on so low that I cannot feel it, so to not cause me any more pain than I’m already in.

Everyone I have spoken to says that this is not normal to happen after this surgery, so I don’t understand why I’m in so much pain?! I fought so hard to be able to get this surgery, I waited 4 years, went through a stressful complaints process, only to have the surgery make me worse, how does that work?! I feel defeated and I just don’t know what to do anymore. It’s been 4 months since surgery and the extra pain has not improved and I’m getting worried that I’m going to be stuck like this now. My neurologist wants to see me on the 15th Feb, so I’m hoping I might get some answers and some help then because I’m struggling right now.

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