When pain returns after an MVD
The following article is taken from an MVD overview written by Dr. Kenneth Casey in the Spring 2017 edition of the FPA Quarterly Newsletter. Dr. Casey is the author of the Striking Back book. You can see the whole article on-line at https://fpa-support.org/wp-content/uploads/2017/04/TNA-Quarterly-2017-Spring-WEB.pdf
Pain recurrence in MVD
As with the other procedures, pain can return after an MVD. When the pain does come back, it tends to come back soon after the surgery. Several studies have found that more than half the people whose pain ultimately recurs after an MVD get it back within the first two years. Long-term studies have found the MVD pain recurrence rate goes down as time passes. On average, about 6% of MVD patients get recurrence in the first year, 3% a year get it in years two through four, fewer than 2% get pain back in years five through nine, and fewer than 1% get it in year 10. One recent review noted recurrent symptoms typically occur after a mean of 1.9 pain-free years, with a yearly recurrence risk of 1 to 4%.
In addition, refractory and recurrent symptoms can occur after radiosurgery or radiofrequency ablation. After the latter procedure, 21 to 50% of patients have recurrent TN and 15% require retreatment. After radiosurgery, approximately 13 to 22% of patients require repeated treatment for recurrent symptoms. Counting the initial failures along with those who have pain recurrence, one pain specialist came up with the following prospects for MVD patients: 81% will be pain-free at two years, 76% will be pain-free at five years, and 71% will be pain-free at 10 years.
Initial failures may happen for several reasons, such as the surgeon was unable to find the offending vessel (or vessels), the nerve wasn’t sufficiently cushioned, or the patient didn’t have TN in the first place. When pain recurs, it’s not because the effects of the MVD wear off. Rather, the most likely reason is that a divided vein sends out new branches and sets up a compression problem all over again. Or it could be that a different blood vessel elongates with age and causes an altogether new compression point. And sometimes these vessels don’t cause a new compression but instead push away the implanted cushion from between the nerve and the vessel.
Other possible causes of pain recurrence include adhesions that form to cause new damage to the trigeminal nerve or failures of the implant. (Adhesions are fibrous growths that sometimes occur along with scar tissue around the surgical site and implanted pad. Implants occasionally can be absorbed by the body - one example of failure.)
In the long-term study mentioned above, patients with vein compressions were more likely to have a recurrence of pain. Also, female patients and those who didn’t get immediate pain relief from the MVD were slightly more likely to have their pain return.
Although MVDs can be done following other procedures that have failed, the success rates are reportedly lower, but several recent papers did not support that concern. The best MVD results come when MVD is the first procedure. Repeated MVDs also can be done following a failed MVD. Those success rates also are a bit lower than the first surgery - around 80% compared to the 85 to 95% range for first time patients.
Stories of CaTNA Members
Gaye : I was first diagnosed with TN in 2000. My diagnosis was fairly fast from my family doctor who said that it was either Trigeminal Neuralgia or Post Herpatic Neuralgia as I had Shingles years before. She referred me to a neurologist, Dr. Furtato, who sent me to Dr. Kiss who verified that I indeed had TN and that she would like to see me once a year for the rest of my life whether I had surgery MVD or not.
Then in 2005 I chose to have the MVd but it was not successful. So on to medication, Tegretol for a time and wrestled with the side effects etc and then Dr. Furtado recommended that I go to Winnipeg to see Dr. Kaufmann as I was at the maximum dose of tegretol.
In 2010 I had another MVD by Dr. Kaufmann and was just about immediate relief for three years and I was drug free and pain free for 3 wonderful years. In 2013, TN reappeared and back onto Tegretol - I went and ended up at maximum dose by the fall 2015 when Dr. Kaufmann recommended a Gamma Knife treatment. Funny thing, I had no TN attacks after they gave me a date for the treatment of December 10th, 2015 and I went through the treatment and have been pain free, drug free since then. I have numbness on my right side and the right side of my tongue and tingling when I have been exerting (working out on the treadmill) but no TN. Life is good for now.
Lori: After my MVD when the pain came back my doctors and I were at a loss as to what to try moving forward. The surgeon I met with in London said that the internal neurolysis was a new approach for Trigeminal Neuralgia. He said that there isn't a lot of information about it. He went in the same place as my MVD and with a metal instrument he "combed" the trigeminal nerve. My TN 2 hasn't returned and my TN 1 isn't as bad as it was before the surgery. I am still on meds but my pain is much more manageable and I was finally able to return to work recently.
Francis: A topic I am familiar with having had a MVD that did not work for me. Also had two balloonings on right side and a Stereotactic treatment on left side and about to have another March 4th,
Rose: I had TN back in 2009 getting ready for my husband’s 40th. I didn’t know at the time what I had but strangely enough my symptoms were similar to what my brother had in his forties.
I progressively got worse and went through both Tegretol and Gabapentin. Neither was helping my pain at that point. Another brother living in Mississauga at the time told me his neighbour had spoken of something similar and she gave me Dr. Kaufman's name.
I did go to Winnipeg for an MVD but unfortunately woke up still in pain. I flew back home and went back on Gabapentin off and on hoping the pain would go away but it didn’t.
Roughly a year later I started praying for healing. I don’t know if you believe, but I grew up believing and my faith keeps growing the older I get. A friend told me that when you are praying for a miracle the devil will attack you and the pain could grow worse. Sure enough for 3 days as I prayed for healing my face pounded with pain but then after 3 days stopped completely and has never returned. That was in 2014.
Helen: I suffered from TN for many years before it was diagnosed. My doctor had no idea what it was and I was treated for cluster migraines and who knows what else but nothing worked. Finally he referred me to a neurologist.
The neurologist reluctantly diagnosed what I had. At that time only elderly people got this problem (or so they thought) and then I was not yet old enough. He had me have an MRI to confirm it was nothing else. He then referred me to the head of neurological surgery at the Foothills Hospital.
Dr. LeBlanc gave me no alternative to cranial surgery. He told me the pain would get worse and worse without it. He said I would eventually have the surgery as I would not be able to live with the pain. I was an elementary teacher and without relief I was quite sure I would have to leave my profession. I sometimes had to quit talking to my class in the middle of a lesson due to the pain. Supervision on the playground in the winter or on a windy day was sheer agony. Thus I reluctantly but hopefully chose to have an MVD.
I was petrified. I had never been in a hospital since I was born and any surgery, especially this type, of surgery was a challenge to cope with. The anesthetic put me to sleep quickly and thoroughly so I remember nothing but waking up in recovery. I cried when my Mother asked me how I felt. My answer was one of relief. “No pain” and I wept tears of joy.
The recovery was not fun. They had twisted my head some odd way to get to where the incision was and it twisted by neck very much to say nothing of very painfully. How that hurt. Thus I was out of school for quite some time but everything I went through was 100% worth it.
After about 20 years the TN pain returned. However it was not as severe as before and easily managed with Tegretol. The episode only lasted a few weeks and then I was pain free again. 30 years later I am still basically pain free. I have had the odd little twinge but not for years. I have always kept some Tegretol on hand and still have some but it is so old it would probably not be efficient. What a joy that is. If all continues as it has since that surgery I will never need it again. My only real physical feeling is that I can still feel the place where they drilled into my skull. It is tender and hurts if I press on it but who cares? It is nothing compared to the pain I had before.
Nancy: I have had two MVD surgeries, by Dr. Michael Tymianski at Toronto Western Hospital.
I had my first TN attack the night before my wedding (I was very stressed as it was in our backyard, I arranged everything). I had been very stressed for two years prior as I was dealing with many family crises. When I reached maximum doses on Carbamazapine and Tegretol (I think), it was time for surgery.
MVD #1: in March of 2017, I had immediate relief. I took 10 weeks to recover completely and went back to my full-time job with no medication required. Thirteen months later my pain started again (once again a stressful time, my mother-in-law dying of cancer). Drugs weren’t working so in February of 2019 I had a repeat MVD with the same doctor. The recovery this time was brutal (I was two years older-60) and just did not “bounce back” ever. My pain is reduced in intensity now though, I can breathe through the episodes. I take Lyrica and amitriptyline but still cannot go back to work. My pain is on my right side. My cheek is often very sore, my teeth on that side feel as if they are made of glass and if I put them together they will shatter. I have low grade electrical currents running through my cheek and of course lots of numbness. My ear often feels like I have an infection starting (but never do), it feels like it’s full of cement. My nose runs continually on the right side and I can’t blow it, its still numb. I developed glaucoma only in my right eye (both specialists say that it is not related to TN or my MVD surgeries), I think it’s very coincidental but hey, I’m no doctor.
My new neurologist feels I have TN2 as do I. The side effects of the drugs I’m on make me very tired (I nap every day and cannot drive far distances at times). My memory is pathetic (I can’t remember what I did the night before). I get confused a lot also (again, the drugs)and can’t perform tasks the way I used to.
That’s my story. TN sucks. Looking back, I don’t believe I would have had the 2nd MVD, but hindsight is 20/20. I live in constant fear that my “episodes” will turn into “ATTACKS” again (which used to come for 2-3 minutes, which doesn’t sound like a long time) but they left me as a screaming/crying lump on the floor.