The MVD took away the stabbing electric pain, which got worse and worse with each attack, and closer together. I had AD from the Gamma Knife prior to the MVD, and because the trigeminal nerve was just about glued to the artery, Dr. Kim told me mine was the worse he had ever seen, and prying the two apart took quite a while and the nerve was agitated, but the electric stabbing was gone. Dr. Kim has the surgery along with an explanation of the surgery on the Mischer Neurological Institute website, he actually shows placing the teflon paddy and the instruments used to separate the nerve from the artery. He is a very proficient and gentle surgeon, if anyone can help, he can.
My AD was from before the MVD, and even though the AD was there, the underlying electric stabs had started again , only worse than before,that's why I knew I had to have MVD. The nerve , which had severe damage from the Gamma, but at the same time , the stabbing electric pains were returning, is damaged, and I have to take Gabapentin, if I miss a dose or step down on a dose so that I do more independently, the frozen face and the eye and ear, nose and jaw pain return, just a throbbing dull constant pain, no more electric jolts. So , to answer your question, if I don't take the Gabapentin, the AD pops right up, with the dull throbbing pain. AND whenever the weather changes and the barometric pressure drops , like this morning, no matter what, I can't sleep and the throbbing is nonstop, have to take the Vicodin and just lay down.
The stabbing electric pain is from the artery pressing on the nerve, and when the blood pressure rises, the pressure the artery places on the nerve causes the stabbing, that's why the teflon paddy (that's what Dr. Kim calls the teflon) placed between the nerve and artery is so important. Still hurts but no more horrible electric firecrackers in my jaw, cheek, ear, and above my ear. Dr. Kim will let you know if you are a candidate for this surgery, he has really almost perfected the procedure. I looked everywhere, almost went back to Michigan or even Loma Linda, until I found Dr. Kim. He is such a great neurosurgeon. Sorry if I repeated myself, went to my Neurologist this morning, and he changed my meds alittle due to the weather..As Dr . Kim told me, all the others, the Gamma Knife, the RF, accupuncture, and all the others don't work, they just prolong the time until you get MVD, and make the MVD harder, like mine. But I much prefer where I am now, to where I was. I have all 4 seasons where I live, so we still have snow. But if I stay on my meds, all is almost OK.
Granny said:
Cathy, are you AD now? Or is the pain constant 24/7 without the electric stabbing pain? I am also wondering if your surgeon knew the only improvement she could get with MVD would be to eliminate the electric stabbing pain. I am ATN and surgery was not offered to me nor were any of the other procedures including gamma knife. The neurosurgeon I saw was recommended from this site and he only does MVD for TN, none of the other procedures as he does not believe they help, if they do only temporary and there is a high risk of making you worse especially for ATN. My neuro thought I might benefit from RF. These other procedures are risky for damaging the nerves as well as MVD then if you are still in pain or get the pain back after MVD it is sometimes called AD, permanent damage to the nerves. I had a 20 year remission from ATN and have been suffering with it again for almost 2 years. I am willing to wait for remission or do PNS.
I often wondered if I would feel better living in San Diego with my son which is a lot like where you live, dry, for arthritis in my spine but I have read many who do improve in a dryer climate usually go back to their usual pain. In Florida I get wet cold fronts. There is no humidity in southern CA but a front is a front when the temps change with barometric pressure changes. I have tmj, surgery in '86 got rid of my constant screwdriver ear pain and I did have ATN before and after surgery, all the muscle problems and an ENT told me that joint is 1 mm away from the TN nerve. Fronts sometimes lock my jaw. Ears get full and have pressure.
Cathy said:
I am in Arizona, any change is barometric pressure is horrible, I have the exact same pains, and I have also had MVD, which took away the lightening bolt , electric shock pain, but the basic TN is still there. Whenever the weather has a sharp change, could be rain or snow or just a front moving through, I have the exact pain you describe. I also have AD from a Gamma Knife I wish I never had before the MVD. The Gamma Knife is so unpredictable it should not be used for TN. The damages are horrible. So I don't have the lightening bolts because I had MVD, for which I am so grateful, but I do have all the same symptoms which are horrible and worse when the pressure changes. You just have to deal with it. If you take extra Gabapentin, it helps, but you get unstable on your feet, if you take Vicadin, that works, but you have to just lay down and not plan on doing anything, but it does help, I take Gabapentin 600mg 3xday, Zanaflex 3xday, and the only reason I can sleep is Clonazepham at night. The Vicadin 10 mg every 6 hrs as needed helps..I have found that if you need the narcotics they do their job. I sometimes will take 1/2 of a Vicadin about 3am , so that when I get up, that pain is gone, and it is so nice to wake up without the pressure and pain. Yes, I agree sometimes after a bout I can get so tired. The pain takes a lot out of you. It can make me exhausted. The worse part of all this is that we still look normal on the outside and it is even hard for my family at times to remember that I don't feel as good as I may look. It is invisible to everyone but me.
