At my last neuro appt. I requested to be referred to a neurosurgeon to discuss if maybe I would be a candidate for MVD.
My neuro didn’t think so, due to my pain presentation ( bilateral, and breakthrough pain is more tn2 variety)
I believe I only have TN1 and that the high dose of meds are what takes away the shock like feature and makes the breakthrough more of a constant boring pain, ice pick in ear pain.
My TN is becoming harder to manage on the meds so I’m just looking for alternative options. Knowledge is power.
Any advice on what to ask the neurosurgeon? Can anyone share their experiences with their first neurosurgeon consult?
Thanks Jackie, I remember reading this, full of good info.
I’m looking for ideas on what to say or ask during initial visit I guess from personal experience.
It was great to read the link again.
Hope you are well? (( hugs))
Hi Mimi…I wish u the best at ur appointment!! I had an unsuccessful MVD and personally would never do it again. I know it works for many!! My pain sounds very similar to yours. I have an underlying pain and electrical pains. The electrical pains are well controlled with meds and now with a peripheral nerve stimulator I have excellent coverage for the constant pain. I would have the surgeon show u the mri and point out the blood vessel involved. Although I did have an artery and a vein compression. I would also make certain that he will not damage the nerve in any way once the compression is fixed. My surgeon apparently thought he was doing something good when he pinched the nerve to deaden it at the end of surgery…I haven’t been back to let him know how that worked out for me :(… ask how many of the specific surgeries he has done and what the success rate has been!! I know u are so desperate for pain relief but, don’t jump on the boat before u know he is the surgeon u want…it is ur life!! Check out a few!! Let us know how it goes
To be honest Lisa, even if he says I’m a candidate I’m not 100% convinced that MVD s the way to go…I have not had any special mris just the regular 'ol ones that discount ms or tumor. I still need to be able to *see if there is a compression of some kind, sometimes it’s my understanding that you don’t see it until surgeon goes in. I’m not sure…I think it’s all wishy washy right now for me.
I definately do not want any damage to the existing nerve, that I know for sure!
And I definately do not want to be on these high dose meds anymore though …I want to function as best as possible.
Thanks so much for your input, I will look into the peripheral nerve stimulor as well.
Although I AM desperate for pain relief, Ive still got my wits about me, lol most days, ha ha.
Thankyou Thankyou, appreciate your advice!
((hugs)) Mimi
I was in the same position after suffering shock like pain for 2 years. Last spring I decided to have gamma knife surgery and I have been pain free since.
Bost3, wow, I’m so pleased to hear that gamma knife worked for you! Do you mind telling me a bit about your surgical experience?
Continued pain free days!
(( hugs))
Bost3, wow, I'm so pleased to hear that gamma knife worked for you! Do you mind telling me a bit about your surgical experience? Continued pain free days! (( hugs))