Mind sharing your story from the start? MVD may not be the way to go. Your neuro has a knife and a needle, is is more than likely to want to try one or other. How/ when did the pain start, what are your aggravating and relieving factors, do you have better times/ worse times, and if so what do you think contributes to these periods? Looking to help, and surgery should be your last option, I understand you have been here since 2013, besides meds have you tried anything else?
I really appreciate your courage to speak up about this. I have my doubts about the science used to promote MVD. I think you are on to something about the virus. And brain surgery is so risky, I had unsuccessful surgery and now I have other neurological problems from the surgery. I am very interested in information you may have about virus causing TN and the antiviral diet as well.
Wow, I have never heard of shingles at the brainstem. Iām so curious, what brought neurologist to this diagnosis? Blood tests? Imaging? Diagnostics? or just symptoms?
I have had shingles several times but not on the face. I know that the virus is stored in the trigeminal nerve while dormant.
I had it about 5 months ago. If I would have known then what I do now I would NOT have done it. I have lost all feeling in the right side of my face, the side I had TN on. I can not hold food in my mouth due to no feeling, my nose on the right side I can not feel and it runs dripping down my face because I can not feel it, my voice is now changed due to the numbness of that side, I talk funny now for the same reasons. I know of some people that have had it and with good results mine is not good. But what you can not be changed you have to learn to endure. Good luck !
Hi Mercy,
The neurologist spent about 2 hours going over all the medications that I had tried then checked out my responses in my arms, legs, shoulders, etc. Apparently, if you look at me, the side that is affected kind of droops a bit. I noticed it on my face, but I attributed it to the pain, especially the pain in my eye (eyelid and brow). He checked my throat, tongue, taste buds, etc. and of course, went over my symptoms and checked my MRI. He is referring me on to a interventional neuroradiologist. I have an appointment with him the beginning of April. I am not sure if there really is much they can do for this. By the way, he thinks this might have all started as a result of the shingles shot.
Nancy
I canāt say that i have a lot of information other than we started noticing distinct similarities between her TN and virusā; the same things that weakened her immune system always seemed to coincide with TN worsening, including beginning at the very start years ago with a shingles rash. Treating virusā is very difficult. Her diet is very, very disciplined. I would really recommend starting by going online to research information. As always with the internet, there is a lot of dubious information, but pockets of valuable insight do exist. Trial and error is really the best way for each individual person to find out what works best. First and foremost though is strengthening your own bodies defenses, and that begins with stress reduction.
Also, be open to other causes; a history of previous neck injury, poor dentail procedures, etc.
I had MVD 5 weeks ago and I feel as if Iāve got my life back again. I was very nervous and apprehensive about having the operation, if it would work and would I end up with any of more of the complications. I think because it is such a big operation itās natural to feel that way. I was on 1600 mg of Carbamazepine daily which affected my quality of life to the point of having no life. I wasnāt offered any other option than an MVD.
Five weeks on I feel great. I have no pain at all. Iām off the Carbamazepine, and I feel better than I have in years! I was sitting eating toast and drinking coffee 4 hours after the operation. I could have come home after 3 days but I have a mobility problem so had to stay 7 days in the end until I was steadier on my feet. I only had 2 lots of morphine afterwards and then was just taking paracetamol when needed. They only shaved the area
needed, so the dressing was hidden mostly by the rest of my hair and once the stitches were out you would never have known Iād had surgery! The only negative thing I can say is that Iāve been left with a whooshing type of noise in my ear. I donāt notice it much during the day but at night or when itās quiet I notice it. It hasnāt affected my hearing at all though. All in all I think it is a small inconvenience for what the MVD has done to improve the quality of life I now have. If I can help with any questions you may have or worries please just shout.
The wooshing is very interesting as I have just developed this about 6 weeks ago when they raised my oxcarbazapine to 900. It sounds like my pulse rate and when I run up stairs or bend to do laundry it is louder and faster. Hope it doesnāt get worse after my e-MVD on April 18th. All of the doctors just say itās common it means your artery is near the nerves in your ear or some such thing. It has me worried. I see the surgeon on the 11th for prework I will ask him if it will get even worse.