I asked my neurologist if I was a candidate for MVD because I feel like sooner or later I'll need the surgery as it seems like that's where everyone ends up. I really hate taking all the meds and scared to death when it's going to start all over again. It's very depressing to face life like that.
He said I'm not a candidate until all other avenues are exhausted because of the morbidity rate (about 1 in 150). I'm willing to take that risk now because I don't want to go through all of those other treatments.
Does that sound reasonable or should I get a second opinion? Was anyone else told this?
I don't know where your neurologist got a morbidity figure of one in 150, or exactly what was meant by "morbidity". The large MVD series I've seen reported have indicated mortality rates of one to two deaths per thousand operations, for causes unrelated to neuralgia or the operation itself. Side effects are a different issue.
MVD from an experienced surgical team is generally successful for TN Type 1 more than 90% of the time. The most common persistent side effect is facial numbness. Deafferentiation pain (anesthesia dolorosa) seems to occur in 2-4%. Central Nervous System fluid leaks from the surgical wound appear to be in the same range, and are generally caught and corrected in the hospital immediately after the surgery. We do hear of occasional surgeries where temporary or long-term hearing loss may occur, or where patients deal with dry eye syndrome -- both unintended and unpredictable results of slip-ups by the surgical team. But I can't recall having heard of figures above 1% for either.
Unless I totally misunderstood him, he said there was approximately 1 death out of every 150 people who have the surgery. I'm leaning towards a second opinion.
Is it true that all avenues must be exhausted before a good surgeon would perform this surgery?
I highly suggest you get a second opinion from a neurosurgeon who is very experienced with TN. I tried tegretol, which I was allergic to, and then took gabapentin, in increasingly higher doses. Medication never fully alleviated my pain, so within 6 months of my official diagnosis, I consulted with a neurosurgeon, and had MVD. While some doctors will suggest you try a few different medications before surgery, MVD does have the best success rate of relieving TN.
I agree with the feedback you've gotten from other members. You do need a second opinion. And it appears that the doctor you've been seeing is misinformed concerning mortality statistics. As for whether all other avenues need to be eliminated before surgery is considered, that's a little more complex. I think you might be dealing with a hold-over of attitudes that prevailed during the 1980s. Knowing that MVD may sometimes wear off over long periods (15+years or more), some physicians have historically recommended against the procedure in younger people who may face pain recurrence later in life. But the reality is that medications very often lose effectiveness over time too -- and when your pain isn't well managed, it can cause permanent changes in the nervous system that reduce the rates of success for later surgeries.
You may have to advocate for yourself strongly if you demand MVD as an alternative to medication side effects. But younger surgeons may also be less prone to opposing this choice. It is yours, after all.
Regards and best
I agree with everyone here. I bumped into the mindset that Red mentions here from one neurosurgeon (I saw three before I booked my MVD). I am still in my 40s but the way I saw it is that I am in some of the active years of my life, running my kids everywhere, raising them, busy, busy and the side effects of the drugs were not allowing me to live my life. I had a well-known, and respected neurosurgeon perform my MVD surgery (I had to travel out of state). He told me that I had more than an 80% chance of remaining pain-free up until about 17 years and after that, there simply is not any research. He told me that most of those who get their pain back will do so in the first year and then once you pass year one, less than 1 percent get their pain back and that may very well continue past 17 years, just no real research confirming that. That was good enough for me.
As far as the surgical risks, I really wasn't afraid of dying at all and knew that my life was likely in more danger on the drive to the out-of-state hospital than the surgery itself. I had a top TN neurosurgeon so his surgical risks were much smaller overall than the other neurosurgeons I had visited (he told me all his statistics). It seemed that my biggest risk was losing hearing in my left ear and I decided that I would trade that for even a chance at being pain-free. I would have done the surgery even if my odds had been 50/50 on being pain-free.
I hit my two year anniversary since surgery next month and I have had zero pain and off all meds since surgery. It was the best decision I ever made. Two things are key, I think. . . 1.) go to a top TN neurosurgeon, 2.) don't wait too long as the pain will eventually make changes to your neurosystem as Red said, making an MVD less likely to be successful. Also, a cure for TN is being aggressively sought right now and the hope is that we will have it in 10 years. I wanted to have my nerve in tact to be ready for that cure when it comes.
Definitely get an opinion by more than one neurosurgeon - a top one. Perhaps consider changing your neurologist, I did. Most neurologists will try to steer you away from surgery. Best wishes to you as you get the answers you need.