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Old 07-24-2014, 03:47 PM #6
DonnaRose DonnaRose is offline
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Join Date: Apr 2014
Location: Iowa
Posts: 8
10 yr Member
DonnaRose DonnaRose is offline
Junior Member
 
Join Date: Apr 2014
Location: Iowa
Posts: 8
10 yr Member
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Quote:
Originally Posted by Zatochi View Post
Hello DonnaRose

I had MVD surgery 1.5 years after being diagnosed with type 1 TN. The one that causes you to have random SEVERE electrical shocks in your face. My doctors tried all 3 of the major meds for TN but nothing worked for me. During that time I had to quit working and driving. My life was pure misery. After having the MVD surgery, I was totally episode free. I have been free of this disease for 3 years now. It took me about a month to recover at home and then a month after that I was back to work. Surgery literally gave me my life back. Yes, the surgery is scary (after all they will cut a hole in your skull) but well worth it in my opinion. If you go the MVD surgery route, please find an experienced Neurosurgeon that has performed a lot of these.

My heart goes out to you because I know exactly how you feel....

Ken
I had the MVD surgery done 16 days ago. I was so excited when the doctor told me I could cut back my meds and be done with them in a week. After I cut them out completely the pains started coming back. Yesterday I got back on a small dose of the lamotrigine I was taking. Today my pain has been absent so far. I know I have to be patient because I have a lot of healing to been done. I am just so anxious to get off meds all together. My doctor is one of the best in the country for 2013-14. The University of Iowa Neurosurgery dept. is one of the top in the country. I'm praying and semi-confident my pain will be gone within 8 weeks. You are right Ken, if this works it will all be worth it. If it doesn't work I'll cross that bridge when I come to it. I need prayers that the pain will be gone and the surgery be a success. I will get back to everyone when I know.
I am always surprised there are so many out there that have no idea what this disease does to you. With no visible symptoms a lot of people don't understand how it really feels.
I wouldn't wish it on my worst enemy.
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