I don’t even know what to think… I’m a bit overwhelmed with many thoughts and emotions swirling about in my mind…
My story in short… I have TN 1 on my right side, first presentation in 2002, within 3 mths i had what i called breakthru pain on opposite side more like TN 2, bilateral tn, on meds for almost 9 months then remission for 8 years.
Fast forward to 2010, TN returns again on right side, classic TN1. Managed on 800mg Tegretol for almost 2 yrs, in April of this year flare up with TN 2 on left side, have been struggling to manage pain since then…
I am currently on 1600mg Tegretol and 50mg Baclofen, since getting to 50 mg of the Baclofen this past Wednesday, my pain went from 8-9 to a 1-2 out of 10.
I’ve been enjoying this relief since friday.
This summer I started researching the MVD process, saw a neurosurgeon here in Alberta where I live, who agreed to do it starting with left side, no guarantees as left side is atypical tn2 pain.
Emailed another neuro surgeon in Winnipeg ( my first choice because of his experience with TN and MVD) and I heard back today that he is willing to do the MVD, also on left side first, as my pain had not been managed until a few days ago.
However that being said he was very honest that the success rate for atypical pain is not great, he rarely performs MVD on type 2. But based on my neurologists reports of my medical history he feels it would be worth a try.
Then later on we’d look at right side.
I am officially on a wait list…aprox.8 months…
But if I was experiencing a level 10 pain they could bump me up, of course that would bump someone else down, so only in a dire situation. I’m also on a cancellation list, where they could call and I would have a chance to say yes or no to the MVD with 2 weeks notice prior to surgery.
I don’t even know what to think right now. I’m thrilled to be given hope at a chance to reduce my meds or get off them altogether eventually, but I also wonder about going through a serious operation with no guarantees…And eventually again on the other side…it’s really a crap shoot, like playing the slots in Vegas.
My husband is very supportive, and although he knows it’s my decision, he really thinks I should go for it.
I wonder how many on here with atypical presentation have found that MVD helped in some way??
I’m grateful for the opportunity, just scared I guess of the unknown…
Thanks for allowing me to bounce of you all…
(( hugs)) Mimi