Hi everyone. I’m new to the site and a TN sufferer for 2 years. After trying medications which either don’t help or I cannot tolerate, I am going to be having MVD surgery in about 3 weeks. I am curious to hear about recovery after MVD - specifically, how long was it before you were able to return to work, but also how long was it before you felt relief from both the surgery itself and the TN?
(Additional info - my pain is on the left side, which comes and goes. I get horrible, shooting pain through all my left side teeth and cheek. Even when the sharp pain subsides, I tend to have pain lingering, just not as intense. My MRI/MRA shows an artery pressing against my trigeminal nerve causing the pain on the left side. I have tried carbamazepine, gabapentin, opioids, tizanidine, clonapin, and toradol. I have also had a nerve block, with no success. The GammaKnife doctor said I was too young a candidate and that he prefers I try MVD unless that wasn’t an option. MVD seems to be the best solution for me, so I am hoping to get relief soon).
I had the same issue on my left side as you. I had an MVD and they found two compressions. The surgery went well and I left hospital the next day and was pretty much up and running from day one. Of course there was discomfort raising my head from the pillow in the days following as the wound healed and I did experience some deafness in my left ear temporarily, but everything resolved itself within six weeks or so.
I had TN R side for approximately 9 years will periods of remission. Finally in Feb of 2018 I had MVD surgery at UPMC. The surgery went well discharged on day 3. It took approximately 10 weeks until I was totally pain and mediation free. The longer a person waits to have surgery it lessens the chance of success. I wish I would have had the 5 years prior.
Hi. I haven’t had MVD, I had Gamma Knife, yet if you’re open to answering this, “How old are you?” I am surprised that your doctor said you’re too young for the gamma knife option?
First, I want to say I am so sorry that I am so sorry you are (and have been) experiencing such pain!
After my experience with various medications, and so much pain, I found a NUCCA doctor. I wonder if you have looked into that? It really changed my life.
Here is a link to more information https://nucca.org/what-is-nucca/
I hope this is helpful.
Hii, Janez I am sorry to hear your case currently.
I’ve got MVD surgery on 2017 but now i’ve got TN recurrence, but the gold standard of medical therapy so far is still MVD surgery. So I am looking for the experiences neurosurgeon to do re-MVD. Few percent of TN after MVD will got re-symptom after some time later. But don’t be afraid we should be confident to face it. it’s just private experience, the symptom will get worse when we consume medicine/ food which make the blood vesel elasticity increase such as ginko biloba and something make the blood vesel dilatation (bigger such as vasodialtor medicine group), I do believe.
I had MVD 3 years ago, unfortunately unsuccessful
My suggestion is check the Dr.s experience thoroughly.
I’ve just started on this journey myself. One thing my neurologist said that really stood out for me: there is some thinking now that early discontinuation of anti-epileptic Rx after surgery may account for some of the TN recurrences post-op. The way she explained it was that the central pain mechanisms need some time to reset - specifically 3-6 months without pain before discontinuing. May be something to discuss with your surgeon & a knowledgeable neurologist too?
Thanks everyone for the helpful information and suggestions. I really appreciate it!
I’m 42. The reason they said I’m too young is that there is a high recurrence of TN after some time and you can only ever have GammaKnife twice in your life. The doctor said I would be better trying MVD first, which has less risk of side effects and is longer lasting. It’s better to undergo the more invasive surgery the younger you are (not that you can’t have it at any time, but like most surgeries, you tend to recover easier). The MVD would target the root cause and keep the nerve intact instead of damaging/killing the nerve.
Seattlesi - I did find an excellent doctor. I have cross referenced him over many sites and checked the medical board registration for any complaints. He was top of his class at medical school and had excellent residencies. Even other doctors I have seen had amazing things to say about him. His specialty is with blood vessels in the brain, so that’s about the closest I could find to a TN expertsimce I have blood vessels compressing the nerve. I do recommend checking the medical boards for any doctor (check multiple states in case they are licensed in more than one state).
Cali121 - I haven’t specifically found a NUCCA doctor but I have done upper cervical chiropractic before. It helps my headaches immensely but didn’t seem to help my TN pain at all. My guess is that since my pain is due to the blood vessel pressing on my nerve at the brain, the NUCCA would be able to fix that for me. I’m glad you found relief with it though!