Neuro visit update

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

Thank you Sarah, That was deffinatley the impression that I got, that I have tried all I can, all the main drugs, and given that I havent had a days remission since it started that she felt it was time to let a surgeon assess the situation. I am delighted, and terrified, and feeling all manner of other things thrown into the mix at the minute.

It may not be an option, but if it isnt that will be easier to take from a surgeon, and after a surgical assessment, if it is what they reccomend, I guess there will be a lot of big decisions ahead, just having it on the table is, in itself a mile ahead of where I was even on Thursday, its just a matter of trying to wait it out, and not follow in your footsteps of giving myself an ulcer! Thank you, trying to stay as calm as I can about it all, its all a long way off, one day at a time eh?! x x x

Yes Sarah, you are right, and that is a big thing about it, it is not nearly as terrifying as it would be if it was real brain surgery, and also, you are right about the bone defortmity side of things too, I dont have any problem with that as far as that goes, but I am fairly certain there is a hereditary vein or arterial tangle, being I am the 3rd woman in the family to have it ( albeit that my mother had one bout and it never came back, she should be included in the count) I am sure that is where the problem lies whether it be fixable or otherwise.
But waiting is the name of the game for now, obviously if its an option and the surgeon thinks the op should go ahead, a lot rests on how experienced he is in MVD’s, because I wont entrust the contents of my noggin to someone who doesnt know exactly what the H#ll they are doing, but I think given my age, the meds I am on,and the fact I want a family is what will figure most highly in my decision making process, if I can have a procedure done that will give me sufficient relief ( albiet just on the one side) to get off the meds to be able to try for a family that is likely to to be what buys the arguement.
Because from where I sit just now I couldnt conciously try for a family knowing the risks to another persons life, I know given my age the risks are low, but if I concieved and God forbid something went wrong becuse of my meds the guilt would destroy me, knowing that I had decided my pain control was more important than a lifetimes worth for someone else is not something I could do. And I think that if an op is available, it will be my hormones that make the decision for me, which maybe sounds naive, basing the process round that, but it will factor largely into the equasion.

Anyway I am gibbering, but thank you again for your response, all my love Gracie x x x x

Hi Gracie,

Nice to see you here again, know how busy you have been with work.

I think the one and only positive aspect of NHS treatment is the waiting times are so long and drawn out there is no danger of rushing into a treatment option. There is plenty of time to think about what is the right path to take.

I contacted TNA UK and they E Mailed me a list of Neurosurgeons in the south who are very experienced in MVD surgery. I don’t know if you are in contact with them just thought I would mention it as a possible source of information for you.

Hope you are having a good weekend,

Love Jo X x

Thank you both ladies, again it takes me a while to get back to respond, life gets in the way you know!?

I appreciate the suggestion for TNA, I’ll see how things run and get in touch with them, the more info the better witht things like this, and sarah, I think you’re right about not down playing your gut instinct, there has to be a driving force for everything! But thank you both, I will keep you posted as to how it all progresses.x x x