[rparrack]

I had been diagnosed with atypical T.N. to the right side of my face in March of this year after suffering through a few weeks of what appeared to be a sinus infection that got worse as the days went by. I was in severe pain for about a week ( in the hospital on continuous pain medication ) until my husband contacted Allegheny General Hospital in Pittsburgh, PA. I was transported there on Monday the 23rd at 9pm and had MVD Surgery on the 24th at 10am. (WOW!) What a difference, for the first month or so, post surgery. Then the pain started again, along with other side effects (chemical smells, metallic taste, hearing loss to my right ear, dizziness, confusion, and still get pain and swelling to the surgical site.) Finally after a few months of dealing with it, the doctors came to the conclusion that I had an allergy to the titanium plate that was put in my head to cover the hole in my skull from the MVD Surgery. On August 12th, they removed the plate and the pain had stopped temporarily. Now the pain is back at different times, it seems to mostly come back when I am stressed or when I am out in the cold air. It causes my blood pressure to soar to anywhere from 180/95 to as much as 215/130. The only thing that seems to help when it gets this bad is I.V. Dilaudid to knock me out. This seems to happen and get out of control about once a month. In between time, I get a couple of small pains, lasting 2 - 5 seconds each day, but I can deal with this. I occassionally still (about 3- 5 times a week) get an extreme stabbing pain at the surgical site and some small stabbing pains to my right eye. Is there anyone out there that has any similiar experiences or any suggestions for me?
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[ewizabeth]

Welcome to NeuroTalk rparrack!

I'm sorry you're still experiencing pain after your surgery. Some others here have experience with this and someone should see your post to share their own stories with you. I hope the pain improves over time. Nobody should have to live with the pain of TN.

[mean laureen]

rparrack
Hi there. So sorry to hear that you are having so many problems. I had my mvd on June 19th and so far I'm doing great. I'm glad they took your titanium plate out. I'm sure that was causing alot of your problems after the surgery as far as the metallic taste and what not. I didn't have a plate put in after my surgery thank goodness. Did they say what was causing your tn pain to start with? Just wondering if it was a blood vessel or something else. Mine was large veins that were growing and pushing on the nerve. I'd like to say to just give your nerve time to heal from the surgery but it seems like it shouldn't be giving you so many problems still. What does your doctor say about it?

Laureen

[jjlsongbird]

Hi rparrack, so sorry to hear about the struggle you are having. I don't know much about atypical TN. Keep trying to get answers and find things that help! Perhaps the pain will ease in time. It's interesting that the worse pain is about once a month. Can you identify anything you do or eat that is different at those times. You say stress is a factor, so I hope you are working on ways to lower your stress (meditation, yoga, etc.) I wish you the best.