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#1 | ||
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Junior Member
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Hi,
I'm Mark from Missouri. I first was diagnosed 7 years ago. I did the drug therepy which worked for 6 months and then had the GK. It worked for 6 years but left my face numb with constant pressure. The tn came back recently and I've opted for the mvd because the side-effects are too restricting from the trileptal. My surgery is in two weeks and I find the prospect pretty scary. I'm convinced if it works it will all be worth it. Thanks, Mark ![]() |
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#2 | ||
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Member
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Dear Mark,
Welcome to the forum ![]() There are some folks on this forum who have had MVDs, including myself. It is a bold step that you are taking, to try to get rid of this beast. I remember my fears before the surgery, you know, worrying about the worst outcome, etc. I was so happy to wake up on the other side of the surgery, doing fine...so try not to worry too much. I will be here, as well as the other folks on this forum, to help you through. I encourage you to continue with this thread, or start a new one, so that we can track your progress and help you as you journey down this road. In the meantime, if you felt like telling us a bit more about you, and your TN story, that would be great, so that we can get to know you better. Lily |
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#3 | ||
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Junior Member
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Quote:
I had my mvd on Nov. 17 and this is the first day without terrible headaches. My left ear is still completely stopped up but I think this will also improve. I am totally without TN PAIN and it is wonderful. My neuro still has me on Lyrica at a dose of 2 capsules twice a day. I'm still not sure why. Sorry I haven't been back for a while. I found a site called livingwithtn.org that is wonderful. I'm homebound for a few more weeks so please reply as I have plenty of time. Thank you, Mark |
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#4 | ||
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Junior Member
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Hi Mark!
We are neighbors...Arkansas here.. and had our MVD's on the same day. Mine was done in Pittsburgh. Today, is also the first day for me that my headache is better. A big high-five for having a successful MVD. I know exactly how you feel as I've been shock free for 15 days now since waking up from surgery. I was completely taken off all TN meds 5 days following surgery. Maybe we can care notes on days that something might be up. Like have you felt any sensations at times in the Trigeminal Nerve area? All my best, Judy |
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#5 | ||
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Member
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Hi Mark,
I think that I have spoken with you on LWTN - you play the slide guitar? My name is Lily there. I am SO glad to hear that the TN pain is gone - if I remember right, they found a good sized compression when they got in there? I am so very glad for people who have successful outcomes - I hope that it stays this way, and that you get your life back. The headaches will come and go, and that feeling in your ear will go away - I had it too, my NS said that the nerve to the ear is close to the MVD site, and that it literally pulls back, which makes the ear fullness feeling happen. I have a titanium plate, and I swear that I can feel the storms come in now - the hole in my head just ACHES. But that is no big deal. Ladyinbraids, Wow, I am so happy for you too -this is double good luck! remind me to schedule all future surgeries on Nov. 17! I am just so happy for your outcome! Yay! Things will slowly improve from here, and you will get your energy levels back to normal soon. I remember that it took some time. Hugs to all, ![]() Lily |
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