I have a question for those of you who've had an MVD. Were your symptoms in the V1 branch?
My TN symptoms are exclusively in the V1 area. I understand that this particular branch is more difficult to treat. I'll be seeing Dr Kim Burchiel soon for a consultation so I'm interested to know if any of you have had success with the MVD for this issue.
I'd like to hear from anyone who had pain in the eye area.
I am, was, V2… And success, keep searching!
I have pain in the V1 in the superorbital notch. Not shocking pains but dull aching only on the right side. I haven't had a MVD but Gamma Knife and it was not a success. I use lidocain patches and Gabapentin which has been working for about six months.
Thank you for the replies. My pain is in my brow and inner corner of my right eye. It's a stabbing pain. I was on gabapentin and was so out of it I ended up losing my job. I've since cut the dosage of gabapentin in less than half and added oxcarbazapine and topomax. I'll be increasing the topomax slowly so perhaps that will help with the pain which has gotten out of control again.
If given the change to have an MVD I will probably do so if I can swing it financially. I simply can't stomach the thought that this pain is only going to get worse if I don't do something about it.
I was on a whole slew of medications that did nothing but made me extremely depressed. I even had Gamma Knife surgery that didn't turn out so well. Since trying the lidocain patches I have cut my medication down to 1800 mg/daily and I'm back to work something I couldn't have imagined six months ago. I would highly suggest you try the Lidoderm 5% lidocain patches before resorting to MVD. Even though your pain is stabbing and mine is burning it's in almost the same place. You will know within a day if the patches work or not. They come in 5x4 inch pad. They are usually used for back/ shoulder pain. I cut them into 3x1 inch strips and sleep with one on at night. It numbs the whole area enough around the orbital notch to almost totally eliminates the pain for the entire day. I can actually feel the numbness in the nerve but pain level is usually a 1-2. Far outweighs the 7+ episodes. I really not sure if the Gabapentin is doing anything I'm just scared to quit taking it. I'm from WA and will be relocating to OR soon. If you would like to talk about it please IM with your number as I would be happy to talk.
Oh and the Lidoderm 5% patches are a prescription but your GP should have no problem writing the prescription. The only reason why I think this might work is the superorbital nerve comes up from behind the eyeball and branches between your skull and your forehead so the tissue is thin there which makes numbing it fairly easy. If nerve blocks work like they did for me the lidocain patches should. If your pain is deeper like inside of the skull obviously this will not work.
Laura, I worked at OHSU in the Neurosurgery Department for 14 years (( am now living in South Carolina) and had my nerve stimulator implanted by Dr. Burchiel and his team. Even though the stimulator failed for me and eventually had to be removed; they gave me a good run for my money. We were close to doing MVD surgery, but after many back-n-forth phone calls, getting a second opinion in Pittsburgh and talking with people thru this forum and another who had this surgery, I decided that the risks versus benefits ratio out weighed each other. And instead continued to pursue the medication route and after trying 14 different medications I have finally found a combination along with botox injection that has brought the most relief I have had in 4 years, with the least amount of brain fog.
As a patient and a moderator, I always say:
We are all here because we are in some way affected by TN. I'm glad you found us. Use every resource you can! And remember you are not alone!! We will be with you every step of the way - please keep us posted. Many can learn from your experience.