First off I’m sorry it has taken me so long to give you all an update on the surgery I had which is now over a month ago and this update is going to be long. I’ll begin this update on how the surgery itself went…
I live quite a long distance from where the hospital is in London, actually it’s at least a 3 hour car journey away, so me and my family went up the day before surgery and stayed in a hotel as I had to be at the hospital for 7am on the 29th September. We had a nice dinner the night before and then an early night, not that I slept I was so nervous.
I arrived at the hospital at 7am with my Mum and was given a bed, turned out my surgery wasn’t scheduled till 2ish in the afternoon so I had a lot of waiting around to do and I wasn’t allowed to eat or drink. At 2ish I was taken down to the theatre and was prepped before going in. They then shaved quite a large chunk of hair at the back of my head, though it didn’t really matter much as I had my hair cut specially for surgery so that it wouldn’t matter. The surgical team said it was the best pre surgery hair cut they have ever seen. They marked up my head and chest of where they were going to cut and then I was put to sleep. Next thing I know I’m waking up in the recovery unit. I stayed there for a while and my surgeon popped in to say that surgery had gone well and there were no complications, and then they transferred me back to the ward. I wasn’t in much pain as they had me on morphine, and shortly after being back on the ward I got myself out of bed with some help to walk to the bathroom. The woman next to me on the ward also kept making me laugh which was really painful because of my incisions, and having my head resting against the pillow was painful on the incision. They had me on oramorph whilst I was in hospital, the nurses kept laughing at me because I said it tasted like cough medicine and I actually happen to like the taste of cough medicine. The day after surgery one of the headache nurses came to visit me with someone from St Jude which is the company that made my stimulator, they turned it on and programmed the device and showed me how to use the remote and charging equipment. The feeling of the stim was strange, it’s like a tingling sensation, almost like when you get pins and needles in a body part that has gone to sleep, but without the pain that that gives you and it comes in waves of the sensation. I stayed in over the weekend and had some visitors each day which was nice and then my Dad picked me up on the Monday and I went home. On discharge they said my staples could be taken out in 10 days time and that just to take paracetamol and ibuprofen for the surgical pain.
I was nice to get home and things were going okay, I was in my usual amount of pain for a few days until it all went to hell. By the end of the week I developed an extra headache in the back of my head a place where my normal headache has never been, it has always been frontal but now I had pain at the back and sides of my head too. My normal headache had also increased to a whole new level of pain and I was in agony – I still am. This was the week after surgery but now it was the weekend so I had to wait till Monday to speak to my neurologists team about it. I called first thing Monday and spoke to my lovely headache nurse who said she would talk to my neurologist about my extra pain and get back to me. Tuesday I saw my GP by this point I was desperate for some relief and asked if she would prescribe me something for the pain, but she said she wouldn’t give me anything without my neurologists say so, so to get them to contact her and tell her what to prescribe and then she would be happy to. By the end of the week I still hadn’t heard anything so rang again and my nurse said that my neuro had said that the issue had to go to my neurosurgeon so they had emailed him and they would get back to me. I continued to suffer with my normal headache being 5x worse and my extra headache at the back of my head also. I heard nothing the beginning of the week and then I was at the hospital on the Thursday (3 weeks after the op on the 29th sept) to see my psychologist. Sat in the waiting room still in agony I bumped into my headache nurse, she said that she was going to call me later as she had heard back and my neurosurgeon wants to see me at 3pm Tuesday and to bring my remote encase he wants to reprogram me.
Fast forward to Tuesday – still in agony. I arrived at the hospital half an hour early and sat and waited by half 3 I went to ask reception what time they were expecting my surgeon they said that he usually doesn’t arrive till 4-5ish. He arrived at 6:15. I waited nearly 4 hours to see him by this point I was exhausted and in so much pain that I had forgotten practically everything I wanted to talk to him about. I wasn’t annoyed at him after all the reason he wasn’t there was because he was in surgery saving lives so you can’t really be annoyed, but I was annoyed at the fact I was told to be there for 3 when they know he doesn’t normally arrive till much later. Anyway he basically reprogrammed me and said that should help, my remote is on a lower setting but I can feel the stim working more and covering a larger area which he said is good, however the sides are not equal one is stronger than the other so it’s still not right.
Despite all that I am still in agony and I don’t know what to do. I’ve spoken to a few people who had this surgery with my surgeon 4-5 years ago, and they have said being in this much pain a month after surgery doesn’t seem right, they didn’t have any surgical pain after leaving hospital and they didn’t experience a worsening in their normal condition. I know they’re not doctors and that a patients perspective but one of these people was completely cured by this surgery (though she had a slightly different headache condition to me) and another now has much lower pain levels after having surgery. A friend of mine who had this surgery and it didn’t help much developed pain in the back of the head after surgery where her normal pain had never been and it’s still there 4 years later and she is still in agony with her normal pain and has to use opiate medication just to get through the day. So hearing that scares me.
It’s over a week since I was reprogrammed and I’m still in agony with both sides of my head. I don’t believe that this is a normal reaction to surgery and I don’t know what to do. I’m back up in London tomorrow to see my psychologist which I really need because I’m going crazy with worry about being in so much extra pain and I really don’t know what to do. To be honest I’m really scared, scared that this is going to be my new normal, scared that surgery has made things worse and it’s not going to improve. Did I make the wrong decision in having this surgery? Was it a mistake and now I’m stuck with the consequences of now being in more pain than I was before surgery? I should probably talk to my neurologists nurse and discuss what is going on with them, but I feel that I need to talk out how I’m feeling with someone first and get someone else’s opinion about what I should do before I talk my neuros team.
Oh and I’m taking volunteers for someone to come and chop off my head for me, as this seems like the only logical solution right now. So if anyone fancies chopping it off, let me know!