Hi KC… Below is a reply I typed out to another member today …it includes all the info you request except who performed my MVD. Dr. A. Kaufmann in Winnipeg, Canada I flew from Alberta to see him due to his expertise.
I’ve had bilateral TN since 2002…
Based on previous studies Type 2 doesn’t have as successful a result overall as those with type 1.
BUT that being said MVD can have a positive result on type 2 TN.
There are many factors and considerations involved but no one can tell you for a fact prior to MVD if it will work or not. There are no guarantees…
My neurosurgeon agreed to perform my MVD on my predominantly Type 2 TN with secondary type 1 shocks as my TN was progressing (10/10 pain 24/7) and refractory ( med resistant ). Over 13 years NO compressions were ever seen on any of my mris.
He found 3 compressions, surgery went well and I was able to wean off of 2/3 meds but had TN pain at 3 weeks post op so had to adjust my med.
MVD didn’t take my pain completely away, but in my case I was pain free for 4 months before the pain increased and meds had to be increased.
The duration and severity of my pain since MVD is “better” than before MVD. It’s not great but it’s better.
At 9 months post op I’m on 2 meds and I actually have days where my pain is minimal.
Before MVD I had no relief at all.
I can’t drive due to meds, I can’t go back to work…yet and I have relentless pain but at least now I get the odd break from it.
So in my opinion, I’m so glad I had an MVD.
I consider it successful!
I’m glad my neurosurgeon agreed to perform it even though we both knew going in there were no guarantees…
Also, my burning is not worse than pre-MVD…nothing is worse.
The only thing I’ve noticed since MVD is that I’ve experienced pain in different locations…
Pre-MVD my pain was in my ear, cheek, teeth, jaw, along my nose, my tongue and shocks in my throat, and cheek. After MVD when my pain increased I experienced TN pain above and below my eye.
I have bilateral TN, my right side TN 1 has woken up a few times since my MVD as well.
I would do it all over again though. Yes, it’s scary but if you read and research all you can and get more than one opinion you’ll be able to make an informed decision.
I would highly recommend having an experienced neurosurgeon who specializes in MVD for TN. You don’t want just anyone poking around in your head! ; )
Check out the MVD group, join and read all you can there of the personal stories to give you a personal perspective.
Mimi
I have bilateral ATN, with all three branches affected on both sides.I had experienced intermittent burning boring pain on the right side of my scalp and face for 9 years before the shocks started, which led me to a diagnosis. I underwent MVD on the right side in January 2013. The shocks stopped, but the burning and boring remained. Due to the fact that I had this pain for close to ten years, my NS felt the nerve was too damaged to benefit from the surgery, so in August of 2013, he implanted a PNS device for pain management on the right.
My left side was only affected for about a year when I underwent MVD in October 2013, and I believe that has been the difference in the surgery being successful. I no longer take any medication, and am pain free on the left, and my pain is completely managed by the PNS on the right.
My NS is Jeffrey Brown in NY, who is a leading TN expert.
Christine
Go back to surgeon for follow up absolutely no relief. Have no idea wat next step will be. I just think if I got all my teeth pulled it would relieve this pain
I be very hesitant to have any teeth extracted. Knowing that it can create more problems and rarely is a solution should give us all pause. Since you just had MVD surgery 2 weeks ago I wouldn't even consider touching your teeth for a while. I suspect a competent, TN knowledgeable and experienced oral surgeon would not want to touch your teeth so soon after MVD surgery. Bill is right that you might find pain relief in the future and will want your teeth then. Many people report not having immediate relief after MVD. So sorry you are still suffering for now.
Gigi said:
Go back to surgeon for follow up absolutely no relief. Have no idea wat next step will be. I just think if I got all my teeth pulled it would relieve this pain
I had my MVD 2 years ago (to the day, more or less) I was pain free for exactly one month, then pain returned…
I find the pains are more severe, intense, but don’t happen as often as they did,
I have type 1, mostly on my upper lip, side if nose.
I would definitely tell anyone to try the operation, for many people it works…
I go to the dentist regularly, I have my teeth cleaned etc, but on the advice of my neurosurgeon I don’t have any injections, looks like the teeth I have now I have to look after, because I would be scared to have injections incase my TN would get worse, or start on my left side…
I’m in Australia, so giving you my neurosurgeon’s name wouldn’t help, but for anyone interested its Dr. Zacest, in Adelaide, South Australia, a wonderful man…
Anne
I am 21 and I have typical pain and atypical. I have it on the left side in all three branches. I had mvd in December and it worked for three months and then all of a sudden the pain came back. I am in the process of trying to find a new neurosurgeon to see if I could get mvd again. I really want something to go back in and see if something went wrong.
I had mvd surgery 2 weeks ago with no relief so far. My teeth and gums absolutely kill me. Iv lost 11 pounds in 6 months. I don’t eat or drink anything until end of day because it triggers the pain. Praying relief will come eventually from the surgery. Starting elavil tonight as I have researched its helped many people. I’m not getting cut on again any time soon!!
Hi Kayli, it’s lovely to welcome you to this supportive site, full of wonderful women (and some men, not many though) you’ll get all the help, love and ideas from people who have been where you are, must say though you are very young, many of us have had MVD a lot with success, unfortunately some not successful (like me)…
I am positive that you will within the next few years see a cure.
I’ve always been on Tegretol, sometimes up to 1200mg a day, but when I am “coping” I can function well on 800mg. (I have had support with other drugs added, Endip, Endone etc)… Since my operation the horrendous pain is sometimes more severe, but bouts are not so often…
We all have to find our own level that keeps us functioning, but not “zombie like”… It’s not easy, it takes a while.
MVD can be done again, some neurosurgeons won’t, just a matter of finding one, mine wouldn’t do it twice.
I hope you can have some pain free days, keep in touch with us, thinking of you. Hugs Anne