Suffering Sucks

Symptoms & Treatments Idiopathic Facial Pain
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Continuing the discussion from It’s time for MVD:

Hi Amanda,
I’ve had bilateral TN for many years. I had the Rhizotomy procedure on my right side at Lahey Clinic- Burlington Ma., because I felt at the time, it was the less invasive procedure before I considered anything else. It has been successful since 2014. Yes, I have some numbness on the right side of my face, but I have gotten used to it. No pain!
I had my MVD surgery at Lahey Clinic in Burlington Ma. in 2018 by Dr.Rhamachandran on my left side. It lasted 3 complete years, and I was off all meds however I did get the pain back on the left side and it was brutal. I went back to Lahey to see if surgery was an option again and Dr.R had left the hospital. There is a Dr.David with an excellent reputation that I saw. He said he would not operate due to scar tissue. I’ve been on many meds. since and finally under control.
I joke around with my husband and say these meds are taking my brain cells, but I definitely believe they are doing damage.
I suggest other options besides all the medication. Do your research and find a surgeon that is successful doing MVD’s if that is your choice. Unfortunately, MVD surgery in some people does not last forever and there is no good real reason why. I would have had the MVD surgery repeated, if the surgeon said “yes”.
Tough decision but I wish you the best. Good Luck!
Kathy

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Hi I’m Robin, I’ve had two mvds. The first surgery the doctor screwed up. I’ve had trigeminal neurologist since 2014. I got it from CyberKnife. I also chose not to use gamma knife.
In 2017 going to the Rogers Mercy emergency cuz I had such a bad pain they didn’t know what to do cuz I’ve been back and forth. Finally they hooked me up with this doctor in India through robot screen and he suggested that they give me Lacosamide I’m on 300 mg 100 three times a day and I haven’t had any pain since. I would suggest that everyone withTN try this. The most that you can take is 400 mg. You have to give up a few things like caffeine. Might I suggest if you’re drinking caffeine with TN you stop doing that. I gave up chocolate cut back on sweets. Well there’s more but I don’t want to go in depth. But I would suggest that y’all get contact with your doctor and tell him about the medication that you would like to try. You’re going to have to gradually change out your meds but I tell you what it will be worth it. God bless