My FIESTA MRI was negative, no compression shown. Should I have an MVD anyway? Is it possible for the neurosurgeon to crack open your brain and find something, even though the MRI showed nothing? I am also wondering if my TN could be caused by my previous brain surgery for Chiari by scar tissue...all questions I plan to ask my neurosurgeon during my appointment on Monday. Any insight from those who have had MVD with no sign of compression on their MRI would be appreciated!
Mollycule
hi mollycule, im having my 2nd MVD this nov. 27 and i dont know if there is any thing showing on my MRI as it was taken to check for MS a while back. the 1st MVD on left side last year showed a vein laying on the nerve and a blood vessel looped around it. this MVD is for the other side and the neurosurgeon made no mention of anything specific on the MRI. the nneuro i have has done close to 500 MVd's and he told me that he has done people with something specific on MRI pre-surgery and people without and found things that did not show up and some people have no compression of any kind that he just wiggled the TN nerve and they had success with the MVD. he said everyone is different and everyones TN is different which means the outcome of the surgery is different for each person. there is never a quaranty of anything with an MVD. it is only aan attempt to decrease or rid the pain completly and improve the persons quality of life. it is the 1st line of action they use because it has the best possible chance of a longterm outcome and the least risk for possible problems after. if the patient is young and healthy they like to try MVD 1st. my 1st MVD allowed me to be almost pain free and off tegretol for 1 1/2 years. it is starting to act up again but it is still wayyyyyy better than before so far. i was very nervous to do the other side because its starting to come back but my quality of life is nil right now. im on 1200 mg of tegretol, eating percocet and dilaudid like candy and i am a prisoner in my house and when more than 1 of my family members is home than im a prisoner in my bedroom, so i wayed the odds and i am willing to take the risk, no guarantees. i dont look forward to having surgery, who does? this is my life though, unfortunately. ive had it for 8 years and its unmanageable with meds and wont be getting better on its own unless i have a remission. but if i did, it would just be back with a vengeance. im not trying to sound all negative or anything, i pray that some day something will work. im just being realistic with my specific situation and accepting it. up until i learned to accept it i was in a very dark place and now i am learning to enjoy the little pleasures i get to have. i hope any of this book, LOL will help at all. sincerely, Jacqueline. PS. pray for me on the 27th and i love your picture
I will certainly pray for your surgery and will let you kow if you can do the same. I love my neurosurgeon, but do not know if he's done alot of the MVD procedure. I took a flier on him for my Chiari decompression as I did not want my family to have to travel to see me in Milwaukee (I live 2 hours north in Green Bay, Wisconsin) and he had only done 40 in his career. I had an easy time and the surgery was successful for 2 years when my headaches came back.
I guess I am looking for a magic bullet, as this pain is intolerable and the drugs make me not me....I'd frankly rather go through labor, because it ends and you get something out of it!
Jacqueline Charron-Chapman said:
hi mollycule, im having my 2nd MVD this nov. 27 and i dont know if there is any thing showing on my MRI as it was taken to check for MS a while back. the 1st MVD on left side last year showed a vein laying on the nerve and a blood vessel looped around it. this MVD is for the other side and the neurosurgeon made no mention of anything specific on the MRI. the nneuro i have has done close to 500 MVd's and he told me that he has done people with something specific on MRI pre-surgery and people without and found things that did not show up and some people have no compression of any kind that he just wiggled the TN nerve and they had success with the MVD. he said everyone is different and everyones TN is different which means the outcome of the surgery is different for each person. there is never a quaranty of anything with an MVD. it is only aan attempt to decrease or rid the pain completly and improve the persons quality of life. it is the 1st line of action they use because it has the best possible chance of a longterm outcome and the least risk for possible problems after. if the patient is young and healthy they like to try MVD 1st. my 1st MVD allowed me to be almost pain free and off tegretol for 1 1/2 years. it is starting to act up again but it is still wayyyyyy better than before so far. i was very nervous to do the other side because its starting to come back but my quality of life is nil right now. im on 1200 mg of tegretol, eating percocet and dilaudid like candy and i am a prisoner in my house and when more than 1 of my family members is home than im a prisoner in my bedroom, so i wayed the odds and i am willing to take the risk, no guarantees. i dont look forward to having surgery, who does? this is my life though, unfortunately. ive had it for 8 years and its unmanageable with meds and wont be getting better on its own unless i have a remission. but if i did, it would just be back with a vengeance. im not trying to sound all negative or anything, i pray that some day something will work. im just being realistic with my specific situation and accepting it. up until i learned to accept it i was in a very dark place and now i am learning to enjoy the little pleasures i get to have. i hope any of this book, LOL will help at all. sincerely, Jacqueline. PS. pray for me on the 27th and i love your picture
I am having a left MVD done on Monday, Nov 5. There is not evidence of a compression, but my surgeon does not believe you need to have a compression to choose surgery. He has had patients have a negative MRI and once he opens them up, there is a compression. Also, I heard this from 2 patients but I have not read it on a medical website: when they had their MVDs done, the surgeon found some sort of adhesion/scar tissue around their trigeminal nerve. One had had previous brain surgery (I don't know what kind), the other had not had any surgery at all. I hope this helps somehow.
My more " advanced " MRI ( w/ CISS and constrast dye) showed nothing at all wrong with me although i am getting electric shocks and toothache pain etc… E.V.E.R.Y.DAY! Its beyond frustrating when this imaging modality comes up like youre the healthiest person alive. Still all my symptoms point to a TN problem.
A lot of patients have a negative fiesta mri I did when he went in there was a extremely large petrosal vein compressing the trigeminal nerve in 4-5 areas. So yes to your first question and yes to the 2nd. I was told by my doctor they are really eliminating other problems such as tumors or aneurysms. Good Luck
My Best