Saw my surgeon today, cervical steroid injection 8 weeks ago, today was a follow up… I saw improvement for two weeks, before symptoms came back.
Surgeon told me today that I now have 3 (not 2) cervical discs that are moderately protruding into my spinal column and that I need a three level spinal fusion to fix it.
Here’s the killer part, he said they will keep an eye on me, but he won’t do the operation as it’s very high risk and too dangerous, so until we get to me needing it as an emergency procedure, he’s unwilling to take the risk. If it were just the one disc, he would consider it..
Obviously he’s the surgeon, so I have to respect his decision and I understand the issue, but living with this has left me virtually housebound. I have fibromyalgia which is now considered “neurogenic” fibromyalgia, he said my whole spinal cord is inflamed, due to the fibromyalgia charging my nerves. So when the discs irritate the inflamed spinal column, it feels like electric shocks and burning pain.
I have days where I can’t even hold the weight of a cup of coffee for more than a couple of seconds.
I asked him if there is a way of de sensitising me, other than increasing the 1800mg a day of gabapentin that I already take, told him I’ve started twitching at movements around me and that my body reacts to all sorts of stimuli..
Something seemed to click into place and he went from saying he was going to refer me to his pain clinic (which I’ve been to before), to saying he knows a guy, a specific pain specialist who he is going to send me to, he said he has only sent one other person which had very positive results, he thanked me for telling him these new extraordinary symptoms and said they were specific…
Now I don’t know what any of that means, one minute I’m sat there thinking all hope was lost and felt like I was about to break, I started rambling on, saying I can’t even walked around a supermarket, but I wanted to be able to fly. Telling him, I’m home educating my daughter and that he would not come across many people like me who are prepared to keep fighting and doesn’t know how to give up… not expecting him to be able to give me any hope, but he did.
So I’ll hang on one more time, I’ll take that hope and cling on as though my life depends on it, cause it kind of does.
In the meantime, he has told me not to turn my head or look over my shoulder, but to turn my whole body instead… oh yes and not to look down… like at all… say what now?? Is he having a giraffe??
It would be so easy to give up, but all that would achieve is make my family suffer more… so I keep smiling and fighting to show my daughter the way, show her that giving up is never the answer, we just need to find other ways to do the things we want..
I’m more determined to try and take her on our first family holiday this year, I don’t know how, where or for how long, I’m going to need to find somewhere I can use a electric scooter.. but this might be the last year that I could even consider it. She said if we could go anywhere, she’d be happy in a caravan by the seaside, bless her heart, makes me so sad that she knows I can’t fly so she wouldn’t even consider suggesting it.
Disneyland Paris would be wonderful, bring a little magic back into her life, but would cost twice as much as I can only sit in a car for up to 3 hours a day, so would have to stop two extra nights in hotels on the way there and the way back, Eurostar would be a challenge, but less bumpy than the driving parts.. we live a simple but happy life, not materialistic in any way, but even if we went without food, we could never afford it.
We could always just move to Paris…. or someone will discover my art….
#discovermyart (is that even a hashtag) #desperatetimes #hopeisnotlost
Yes I know these aren’t even hashtags, I spent 6 months hashtagging my arse off last year.. I’ve accepted I have no idea what I’m doing, so decided to just started blogging daily instead.. #youneverknow 😉
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