Well it has been an interesting week all round, and I am having a freak out time right round about now. I went to the pain clinic, on Wednesday, which was great the doc was really interested, has studied face pain in depth, was encouraging about botox, and prescribed me duloxetine,(cybalta) which I need to have written up next week. But she was supportive and interested and encouraging and didnt write me off as a nutjob, or some sort of hypochondriac, and I told her that they had written off sugery and that it wasnt an option, so we didnt discuss it further.
As of yesterday things have been turned on their heads, I went back to the neuro, I told her how much better things were without the lyrica, that I had a new script, talked about botox, but she said carry on with the new meds first. I told her that the indomethacin she had prescribed didnt work well enough to warrant the constant stomach cramps and diarrhoea that came along side it, she checked over my symptoms and triggers, and has agreed that it is indeed trigeminal even though it is in my ear, because of the responses in the rest of my face.
She asked about the previous MRI and I told her that I felt it was only ordered because the last guy thought I was a nut and wanted me out of his office, so she is ordering a trigeminal specific MRI, she doesnt want to see me again, but once she gets my MRI back, she will look at my results and is sending me on to a neuro surgeon to see about an MVD, and they can decide whether or not to operate, but in her oppinion it is now the way to progress with things.
in the last 18 months I went from thinking MVD yep I’m young, they’ll do that, then, well I am atypical, no, no MVD, to then thinking that due to the lyrica making it worse and causing the atypical that it might be an option, but being told no in no uncertain terms, to now being sent on to get seen by a surgeon for them to make the call as to if I am a candidate, but if she didnt think I wasn’t a contender, she wouldnt send me on.
I could get someone who wont opperate without seeing a compression, and if the last MRI is anything to go by there wont be one visible, but then again, they might just say lets do it, so I am in a very very strange place just now, I dont know how to deal with everything that is going on in my head.
My husband is scared silly about the prospect and has said, " It is your decision,and I will support it, I cant tell you not to, because it is telling you to spend the rest of your life in pain, and I can’t tell you to do it, because it involves putting your life on the line" ( The eternal optimist!)
It is all a long way off, that’s just the way of the NHS, but it is now something that is on the table, and its a lot to take in.
So that is my news I am just not sure what to say or do about any of it. I thought I would let you all know.
Lots of love to all
Gracie x x x