My Experience of GN

Hello folks,

Thought it was about time I came on here and said hello, and share my experience of GN.

This has been a long story in the making, and for the last 2 years we thought it was TN I had, due to Atypical Facial pain alongside and a family history of TN, it all just made sense, especially since the pain I was getting was deep in my ear it was in that miss match crossover area.

This started long before I realised it, I was having one sided throat pain, clicks in my throat when dry swallowing, an ENT checked it and said all fine so never really thought about it again as something that would be a long term problem, and forgot about it.

The neuralgia started, one day after a night out clubbing, loud noise, from hot to cold when leaving, thought it was just some kind of damage to my ear, it was hitting my tonsil, tongue, and deep in my ear,same side, after a week of antibiotics for an "ear infection", gp said neuralgia, wasnt specific as to which and I started on tegretol.

I looked at options, saw geniculate, and glosso alongside the tn, but wrote them off due to the neuralgia already being in the family. ( my great aunt has had cyclical tn for many many years)

As the drugs progressed, and I became more used to being wasted, my facial pain got worse, it turns out that it was the additional meds I was taking over and above the tegs that gave me the type 2 facial pain, they were working against each other, and with the extra facial pain it was just adding to the diagnosis on TN, anyway I stopped everything but the tegs after a conversation on the brain talk forum, and the type 2 went away.

Neuros, docs, pain clinics, MRI's this going billateral, the plan was to do a tn MVD, got the last MRI, said no compression, but slight abnormality, so no op, I started looking at options, and GN came up again,I spoke to the consultant and it all fits happy with that diagnosis.

Consultant spoke to the surgeons said there is no one in scotland who will do a nerveblock, much less that particular decompression, and as far as they know no one in the uk does the op either. I have found out that there is a gamma option but there's only been 2 or 3 done, and not with huge success.

So here I am, huge teg doses, and GN it is, I would have had the MVD for TN but not this, this is a much riskier op, too risky,especially when there are so few of us with this, and surgeons just havent had the opportunity to hone their skills at doing the procedure. From what I have read even Janetta himself has only done 40 of these since 71, and 2 of those were fatalities, not all successful in the others that were completed, and he is the MVDDADDY, but that is the states, uk is another story entirely.

Do here I am, 28, and not a whole lot of options on the horizon,
As for drugs I continue with the tegs they keep the pain I get restricted to my ear, and cuts the throat and tonsil tongue pain, so stick with that. the gaba lyrica and lam, among other things give me type 2 tn pain, the endomethacin gives me stomach cramps, amatryptaline leaves me unable to get up to go to work, duloxetine and venlafaxine leave me wretching for 24 hours solid.

Heat/cold worked for the atypical pain, but nothing else, and that's gone, aromatherapy does nothing but calm me, pressure massage does nothing, accupuncture is too expensive, and it helped with the atypical but left me with an ongoing scalpel sensation on the left side in my temple, but nothing too bad, and nothing I cant deal with.

So that's a very long story short. But that's enough about me, what is everyone elses story?

Loads of love Gracie x x x