Dear all - I have seen Dr Ken Casey give video talks (8years ago) and where he claimed that MRI is meaningless as it’s resolution is insufficient to detect small vessels anyway. He seems to advocate MVD regardless of MRI outcome (if I understood him right). Would people here agree with both statements? Or maybe special types of MRI are now able to detect all vessels? Or maybe MRI has generally improved and now can detect such vessels? Many thanks.
They now do both a MRI and a MRA which is done on a 3T magnet and shows the vessels very clearly. With that being said mine did not show anything specific but I didn’t care cause the pain was unbearable. I had my MVD surgery on July 2nd. Come to find out, my pain was more so cause by scaring on my trigeminal nerve. They said it can happen from previous infections in the body. Possibly as a kid.
Many thanks for the quick answer. I shall look out for that combinatiin in future scans (unless this is now standard). Sorry to hear the “easy solution” was not found in your case. Could they at least get rid of scar tissue? Are you better now? I hope you are.
Yes. The surgeon to his time and cleaned it up. Sounds so crazy but it makes so much sense to me now. I could not understand why my pain was so great and why medication did not help anymore. Now I’m totally pain free. I feel like a new person. I had been in pain for many years and constant pain prior to the surgery. I have to remind myself that I can now chew on that side. I had three teeth removed before we figured it was TN causing the pain.
I am very very glad for you
Thank you. Hang in there. Hopefully you will find some relief soon.
I had the 3T MRI, my neurosurgeon saw and showed me where the problem was, but when I had the MVD surgery he found a second problem with nerve rubbing on vein. He repaired both I have been pain free since April 2017. Praying for more pain-free years. Do research on your surgeon and best of luck.
I had MVD in 2012. My surgeon was Dr Dong Kim. He is the head of Mischner at Memorial Herman in Houston, Texas. He did not see anything on my MRI, but felt very strongly I had TN. He was so right. I would do it again in a heartbeat. Feel free to contact me. God Bless.
My MRI showed no problems. I had an MVD anyways and they found the problem and fixed it. I was pain free for a few months and then it came back, although not as bad as before.
I suggest doing your research. Although MVD may help in the short run, it has very poor performance overall with reoccurrence of pain running at about 50% within the first year after surgery.
Thank You azurelle. This seems a nice I review article that I have so far missed in my lit search (I am a researcher, though in a different field). But your number of 50 percent surprised me - usually the numbers look better in the publications I saw. And can you please clarify where you got that number from? I found this in the very publication you just sent: “The recurrence rates after MVD, compared with those after other invasive treatments, are among the lowest (20% at 1 y, 25% at 5 y).” So the number given in that text is 20 percent, not 50, it would seem? Of course the numbers for cases like me (TN type 2 all the way) are indeed worse. “fighting back” indeed says that MVD in type 2 cases are somewhat over 50 percent or so. But even that sounds pretty good to me, to be honest.
Keith and cheryl2 - thank you also for your messages. I am really worried about false negatives from surgeons looking at the MRI scans. The papers report low numbers of these claiming there is nothing but then at surgery there is a compression (usually the papers report less than 5 percent of such error) but firstly I think the error may be higher in some cases - namely for those who only have a single compression (this is because when you look closely at these papers, it seems that the prediction rate for the exact place of compression is low (about 85-90 percent) meaning that the surgeon is probabl more likely to miss such compressions in single-compression patients). And secondly, I have seen papers that only report outcomes anyway for those who they decided to operate on. This would mean that many of those they did not operate on might have compression. So I would not be surprised if the false negatives rate is, overall, substantial (not quite sure how large, exactly, but certainly not under 5 percent). That worries me, because here in Germany, I can’t convince a surgeon to operate me if they base everything on their perception of an MRI scan alone. If I am a case of false negatives conclusion then I simply will not get surgery and will therefore continue to suffer.
Lastly, is any of you two a “pure type 2” (never had type 1 pain) case? (I might open a new thread if you are not). I really would like to communicate with those and who had a surgery. Thank you.
I also had a “clear” MRI, t was that status until Dr Casey saw it, and pointed to the compression with his blue pen.
He answered me that the majority of Radiologist Dr’s look for things that don’t belong, like tumors, etc. They are not trained to see that the vessel and nerve are too close together.
He did my MVD, my nerve was grey instead of a healthy white color. It was perfection for 14 months. I would go back to him in a heartbeat, he is compassionate, brilliant, and dedicated to Facial Pain.
3 years later, I had an MRA or hi- resolution scan done, it did not identify a reason for the pain to return. But did show the Teflon pads.
In the right hands, I do believe the MVD is our best chance, since it is the only procedure that helps the nerve instead of damaging it further.
Yes, the success rates are not 100%, but I would do it again.
The surgeons will often time find the compression during surgery.
If the TN pain is due to trauma of some sort, sometimes that is not visible on the scan either, and trauma would not be helped by a MVD surgery.
Finding a specialist in Facial Pain Doctor is key.
Sorry for the confusion, more recent studies I looked at combined all TN surgeries for the 50% return of pain within one year. MVD may be lower than that as the study added everything together.
That is due to the fact that back then, which actually would have been referring to MRI technology that was 10-15 years ago. There is also some misinformation in one of the responses posted here, too. Regular MRIs and MRAs (an MRI that uses a specific image enhancer to mimic one with contrast) use only 1.5 Tesla magnets.
According to Dr Jeff Brown, a member of the Facial Pain Association (FPA) Medical Board, an MRI using a CISS, VIBE, or FIESTA protocol is needed to to help find compressions. A 1.5 Tesla MRI can be used, however a 3.0 Tesla MRI will show a clearer image. I suggest to keep in contact with the FPA on further updates on newer MRI technologies as these are continually evolving. Don’t totally rely on information that is more than three years old in regards to MRIs.
Excellent information, many thanks! I read somewhere else here about FIESTA, and I assumed its a special machine, I did not know its software on top of usual machines. Thank you.