Hi Everyone! I'm new to the Living with TN website and I've been going thru all the discussions. Last night I read that MVD surgery doesn't work on Type II ATN, that it will actually make the burning worse. I have a combination of the sharp piercing pains and the numbing pain in the upper/lower teeth with the acidic burning in the cheek and tounge. I will be meeting with the neurosurgon tomorrow afternoon. I'm scared, but I feel like I'm runnung out of options, I've been 16yrs with TN and my meds are losing their effectiveness.
Hi Jenna,
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 and that 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 realistic view…
Huge (( hugs )) , good luck at your appointment!
Mimi
MVD did not stop the burning boring pain I Had for close to 10 years on my right side, but it did stop the shocks. I did get complete relif from both the shocks, and burning boring pain on my LEFT, which had on,y been affected for one year. My NS feels the length of time the nerve was compressed is directly related to the success of the operation. I had a peripheral nerve stimulator implanted on the right side eight months after MVD, and it is completely controlling my pain on that side. Due to this, and the success of my left side MVD, I no longer take any meds, and am pain free on the left.
I would definitely do it all over again ! As Mimi said, an experienced NS is the best bet. The doctor I used is a TN expert, and even though I had to go out of state to see him, I would not let anyone else touch me.
Best of luck
Christine
I have type 2 tn but in my mri 3 tesla scan I showed compressions on both sides I will not go through with surgery at this time Feel it is too much of a risk for me If It was guaranteed to help hell yes I would do it but obviously its not so I will wait.
I have type 2 and had an MVD and it only helped for a few weeks.
I just started seeing a pain specialist after 2 years dealing with the pain and he's thinking my atypical pain is caused by a damage to the upper neck/spinal cord. He had me do an MRI of the neck a week ago and saw some problems so now I'm doing 2 more tests to find out if that's it.
Ok, I've started this 2 times now, switched pages to look at profiles and lost what I was writing! Well, 3rd times a charm! Shindig, I'd really like to hear what they find, I hope it's something that can be treated! I understand what you mean jstagrl29, I would prefer to wait for a "for sure" too, but I've had TN for too long and I really don't want to wait until the meds no longer work completely. I'm most likely going with the surgery Mimi, Christine thank you for sharing your experiences. I'm glad that you had some positive results from MVD it gives me hope for my future.
Hey Jenna,
My story is almost exactly like Mimi’s…I had my MVD April 12, 2013. I was able to get off all 4 of my meds for almost 8 months, then had to start back PRN, now I’m taking Tegretol on a regular basis and finding some relief with the type I pain that is predominant these days. I am certain I wouldn’t be here right now if I had not had my MVD…also had a TN Specialist NS, had to go out of state and would do it OVER AGAIN! I tried to return to work in August, but had to permanently quit after 6 weeks, as ALL the progress I had was completely turned around… But despite of it all, I’m so desperately blessed! Would do it again in a heartbeat!