Ok,
I can’t do the MVD, they can’t see problem with any vessel in my TN MRI.
CARBAMAZEPINE (Tegratol) was really bad for me, after 800mg the side affects was like Chemo !!! so after 6 month my doctor ask me to try Pregabalin, I started with 150 mg a day and it works for a year, then I’m 2.5 years till today on 450mg a day. (X3).
This is the permanent pain !
Today I’m after 10 days of attack that I just wanted to jump from somewhere.
Please help me stop this pain
Hi Be happy,
Not all compressions can be seen on MRI, it usually can only be seen once they get in there. Many arteries or veins can be hidden underneath not visible in MRI.
I am having mvd without ever having specialized MRI. My neurosurgeon is very skilled and believes in my case that he will find compression. However, no guarantees, and he knows not to touch anything if he goes in and finds nothing.
That’s a risk I’m willing to take.
Do your doctors offer suggestions?
I’m not familiar with your medical history, but I would encourage you to seek out many opinions, and research as much as you can ALL procedures, med combos etc.
Unfortunately it’s trial and error, which is miserable.
In the meantime, have you ever tried heating bags to ease the pain, take the edge off?
Some members use lidocaine patches, or mouth rinse?
I understand, I haven’t had much of a break from my pain since September.
It wears you down.
But we have to try and keep hopeful…the alternative is not acceptable.
(( hugs )) Mimi
Yeah..........everything Mimi said! They don't always see it...........a LOT of times they don't see it. Who is it that is telling you that you can't have MVD??? If it's a neurosurgeon, I suggest you go to another one. Make sure they specialize in TN and MVD surgery. Many HUGS to you and I will keep you in my prayers.
Many thanks. Yes he is the best n.s and expert with TN . Trust me
Mine wasn’t detected on the MRI either , however my neurosurgeon said if the tegretol helped then that was a clear sign, problem was we had to keep upping the meds to stop the pain, and I became a zombie! Mvd was hands down the best decision I have ever made in my life.
I couldn’t live with that pain, nor could I live in the doped up state I had to be in!