Been a while since I posted anything so a general review – 5/10/15 went for mvd awoke in the afternoon and I was feeling good, cups of tea and toast, sat around phoning people saying how marvellous I felt, no pain, a bit groggy from the op but overall felt brilliant. Went to sleep, woke up Tuesday morning, not feeling quite so great, I felt pretty rotten to be honest. Spent all day being sick, didn’t eat anything and just sipping water, felt like the worst hangover and come down ever. That wore off quickly enough though, woke Wednesday and still not great but hell of a lot better than Tuesday, was up walking around on my walker on Wednesday, drinking and eating. All good.
Still good on Thursday apart from struggling to sleep in hospital. No more sickness, getting about ok, so home Thursday. So so happy!
Couple of weeks at home doing nothing, spent pretty much the whole of the next week in bed reading my book, pain in face almost non existent, tiny tiny little tremors running along my cheekbone, very minor and very infrequent.
Carried on like this for next couple of weeks, stitches out at my local dr’s 11 days after the op, all going well.
Over the course of the next couple of weeks things started going down hill a bit, the majority of my scar was fine, little bit at the bottom was swollen and sore, started leaking, dr gave me 3 courses of oral antibiotics, said they would inform my surgeon but didn’t, after 3 weeks and my scar getting more uncomfortable I called my surgeon who had a little hissy fit that my dr hadn’t informed him that I had an infection and asked me to come in immediately. I then spent the next 11 days in hospital on iv antibiotics, infection, small csf leak and a granuloma of scar tissue or something.
Was not a happy chappy to spend 11 days in hospital when I didn’t feel especially poorly, got told off by ward dr for being a bit stroppy due to risk of infection of meningitis etc, had to have scar opened up and washed out, granuloma removed and restitched. Missed my Christmas do with work, gutted! But had a wonderful pain free Christmas! Was worth it just for spending Christmas at home with my family and being pain free, was so weird to be pain free. Such a novelty. The best Christmas present I could have ever dreamt of. People I barely know telling me how much better I look and how well I look, put on weight because I can eat properly, laughing, smiling. All very strange after almost 3 years of continous and horrendous pain. I cant put it in words how strange it was.
My kids are being better behaved, me and the wife getting on better, me and my family and work colleagues, got a list of jobs I need to do around the house that im actually looking forward to being able to do, family dos that I can actually go to, having a social life again. Getting back to work full time, so much to look forward to.
Still getting very small mild jolts of pain, barely noticeable, not interfering with anything and certainly not going to have much of an impact on my life. Scar pretty much completely healed. Only concern is my ear above my scar is very sore and numb, it feels like ive been out in the cold and some joker has just flicked my ear, that would have been my only grumble and again something I can easily live with no problem. Also got a numb spot where my scar is that gets really itchy but its numb so I cant get the itch! Annoying but again all good.
Then last weekend was taking the Christmas decorations down and I felt this pain along my cheekbone, mild to start with, only lasted maybe 20 – 30 seconds but it was strong enough to stop me from what I was doing, just sat there with my head tilted to the side in shock, couldn’t believe it. No doubt what it was, none at all.
That was on the 2nd January or maybe the 3rd, since then its been every day, still loads and loads better than what it was pre mvd and I would still class the surgery as a success in that I have some quality of life again.
If it had been like it is now when I awoke from the surgery it wouldn’t have bothered me, I would have accepted the reduction in pain and been happy about it, I can live with how it is now, would be happier to have no pain but little pain is better than lots of pain.
My issue now is that I had almost 3 months pain free, feeling good, then suddenly over a weekend it kicks off again, fair enough much lower levels than previous and barley interferes with what im doing but why after 3 months? Is this part of the healing process? Is this it starting again? I have an appointment with my surgeon on Friday to go through it with him, apparently im his first ever repeat patient. Hes gonna hate me! First I got an infection: now im going back complaining of more pain. The nature of this condition means that no body knows next to anything about anything.
Im trying to keep my chin up, grin and bear it. But im terrified, really really scared that its going to go off again, I couldn’t cope with the meds pre mvd and am not really interested in trying them again, they sent me a bit mental and didn’t control the pain enough to make the side effects worthwhile. I know that work wont put up with much more absence from me and as soon as I start missing days im going to be out the door. I don’t want to have to put up with this for the rest of my life, I was miserable as im sure all of us are when dealing with this stupid pain every day of our lives, I don’t want to put my family through it again, just getting over the previous 2+ years.
Today has been a pretty bad day, have had lots (compared to post mvd lots, pre mvd probably would have classed today as a good day) of small and quick flashes of pain all over the place, all the old areas and some new ones as well. My ear is driving me round the bend, every time I cough or sneeze it hurts, its sore and achey rather than extremely painful, best way of describing it is like some mean person has flicked my ear in the cold, however it feels like that when I put a t shirt on or a jumper. The numb but itchy spot is a wee bit frustrating but again on its own its not a big problem, lump them all together and it’s a bit of a problem.
It’s the face pain though that’s got me on edge, whats going on with it! Is it fixed, is it coming back? When I see my surgeon I know he is not going to be able to provide me with any answers, its only 3 months since my operation and I know it can take up to 1 year to fully recover. Was so happy and optimistic for the future, its been over a week now and everyday seems a little worse. Boooooooooo!