Hi everyone. Around Thanksgiving, I posted a blog about the return of TN pain post MVD. I have since seen the doc and he’s been soo supportive, offering info regarding more surgeries, meds, giving me all the info I need to make the best decision possible. I just put a post on my TN blog so I will give you the link instead of retyping everything.
Misty,
I am sorry you are suffering. I just read your blog. I know it will be a hard decision as to your next course of action. But after reading your blog I realize that I need to make the best of every day. It seems like your TN returned and with severe attacks. I had MVD and have had continuing pain but very minor. But it is always in the back of my mind that the pain will again return with severity. What did the surgeon find during your MVD? I was curious if he found a blood vessel offending the nerve?
I am hoping you will have pain relief.
Liz K.
He found a “super” vein wrapped tightly around the nerve. The vein was too large to cut so he padded the best he could. He said it even disappeared into “Meckle’s Cave” - an area too small to reach with instruments. My surgery took a total of 7 hours.
Dr C is thinking that my attacks will probably pop up now and then because the vein and nerve couldn’t be completely padded. If the attacks get too frequent and too painful and can’t be controlled with small amounts of medication, he gave me a few options: Gamma Knife, Rhizotomy, or be referred to Oregon Health and Science University to meet with a doctor whom he says is better than he. Unfortunately, a repeat MVD isn’t an option because the problem is most likely the unpadded areas of the nerve. I am very hesitant to do Gamma Knife or a Rhizotomy procedure at this point because both of those damage the nerve permanently - and according to Striking Back, the percentage of success is much less for me now. I will save those as last resorts. I just never want to go back to the levels of medication I was previously taking (800mg of Tegretol a day, 2400mg of Neurontin, and 150mg of Topamax daily).