I had MVD in Pittsburgh six weeks ago, am Type 1. The operation was successful, but I am still having jolts of TN pain. Perhaps it’s nerve “memory”? How long should I wait before having another procedure e.g. glycerol injection? Anyone share this experience?
P.S. I had TN for seven years before surgery
Hi Robin,
I know how “scary” it can be to feel TN pain after having a successful MVD, but I would caution you, try not to panic, ( easier said than done) deep breaths, many patients have felt varying degrees of TN pain or odd sensory feelings, as your body heals. It is not necessarily indicative of a failed MVD.
Any good Neurosurgeon will tell you it can take up to a year for your body to completely heal from this surgery. You should not have any additional procedures until at least a year post op. I’ve heard many a reputable Neurosurgeon caution against it.
Having additional procedures too soon can escalate your risk for complications and/or permanent damage to the trigeminal nerve like anaesthesia dolorosa .
Unfortunately MVD is not a cure. Many people have had great success with minimal to no pain for years after surgery but some like me remain on reduced TN meds and experience only a few months pain free after successful MVD. In my case, I knew I still had TN as I started reducing my meds post op, and I experienced 5 months pain free on one med instead of 3 meds and by month 6 the pain increased…as did my meds. Ultimately at 2 years post op my TN is not managed, BUT it is definitely better than pre-MVD. I do not consider it a failed procedure. It was successful as 2 arteries and a vein were successfully decompressed.
There are many variables, and much is still unknown as to why …
My best advice is to think positive!!! Dig deep for HOPE that you are healing and your pain will stay minimal and may even disappear altogether.
I have known some people who after several months post op had their pain disappear for years, no meds.
Keep in touch with your doctor, and if you need too, don’t hesitate to ask about going on a low dose med to help ease any pain.
I hope as you continue your recovery your pain subsides…at the very least it’s minimal.
((( hugs ))) Mimi
Thanks very much, Mimi. I think my neurosurgeon was tending towards a glycerol injection, but he did say to stay on the low dose for a while, though not a year. AnywAy, I would wait until the TN was worse before taking action. I’m OK on the low dose of meds, just worried that it will get worse, but maybe it won’t.
The fear is very real, only those of us with TN can truly understand that fear.
Positive thoughts !!! I truly believe the power of our mind can work miracles…
I hope you can squash the normal feelings of fear & worry and your recovery goes smoothly and MVD provides you with years and years pain free!!
Huge ((( hugs ))), Mimi
I would say that it's too early to tell since you are only 6 weeks out and the fact that you have Type 1 which an MVD is most effective. I had my MVD more than a year an a half ago and honestly, I may have been having smaller shocks after surgery but I didn't feel any. My surgeon kept me on my high dose of Tegretol for 6 weeks after surgery and then it took me 3 weeks to ween off the meds. He said that my nerve may need some time to calm down and heal so he'd rather leave me on the meds. I was having bad breakthrough pain before and I had none after but again don't know if I would have had any or not during that time. I can tell you that for about the first year after I had weaned off meds, I did experience a "sensation" at the same trigger areas. It was not painful at all but I did feel something. It was random and intermittent just here and there. My neurologist told me that it was nerve memory (like you stated). I feel nothing now except for sometimes at my monthly support group meetings (I still go to support others), I sometimes feel a painless "sensation" when we are discussing the pain, etc. It's kind of weird but then it just stops later. Again, none of this hurts at all, it's just kind of there as a reminder.
I've been told that it can take up to a year for your nerve to fully heal so I wouldn't do anything else until that year is up. It could be that it will take longer for your nerve to heal since it's been 7 years. It had only been 9 months for me. I was told to take a vitamin B multi and magnesium to assist with the nerve healing so maybe add that if you are not doing that. Definitely try not to worry though as every recovery is very different. Hopefully your nerve just needs a little more time to heal and know that all is good now.
mybell said:
I would say that it's too early to tell since you are only 6 weeks out and the fact that you have Type 1 which an MVD is most effective. I had my MVD more than a year an a half ago and honestly, I may have been having smaller shocks after surgery but I didn't feel any. My surgeon kept me on my high dose of Tegretol for 6 weeks after surgery and then it took me 3 weeks to ween off the meds. He said that my nerve may need some time to calm down and heal so he'd rather leave me on the meds. I was having bad breakthrough pain before and I had none after but again don't know if I would have had any or not during that time. I can tell you that for about the first year after I had weaned off meds, I did experience a "sensation" at the same trigger areas. It was not painful at all but I did feel something. It was random and intermittent just here and there. My neurologist told me that it was nerve memory (like you stated). I feel nothing now except for sometimes at my monthly support group meetings (I still go to support others), I sometimes feel a painless "sensation" when we are discussing the pain, etc. It's kind of weird but then it just stops later. Again, none of this hurts at all, it's just kind of there as a reminder.
I've been told that it can take up to a year for your nerve to fully heal so I wouldn't do anything else until that year is up. It could be that it will take longer for your nerve to heal since it's been 7 years. It had only been 9 months for me. I was told to take a vitamin B multi and magnesium to assist with the nerve healing so maybe add that if you are not doing that. Definitely try not to worry though as every recovery is very different. Hopefully your nerve just needs a little more time to heal and know that all is good now.
Thanks, Mybell I’m hanging in and will wait a while before considering anything else. I am now on 600mg of Tegretol, and still had a twinge, though nothing as bad as before. So long as it doesn’t get any worse I’m OK to stay this way.
If your pain is less than before, I'd say that you are at least partially successful at this point and will likely improve from this short time out. FYI - I was on 1200mg of Tegretol at surgery time AND I was having breakthrough pain pretty badly the weeks before surgery. My neurologist was about to add in another med to help the Tegretol but I decided to wait for my MVD. So with that high of a dose, if the pain had improved, I could have very likely been experiencing smaller shocks and just not have felt them. I'll never know for sure. Stay strong and be sure you are doing all that you can to take it easy and let your body heal.
mybell said:
If your pain is less than before, I'd say that you are at least partially successful at this point and will likely improve from this short time out. FYI - I was on 1200mg of Tegretol at surgery time AND I was having breakthrough pain pretty badly the weeks before surgery. My neurologist was about to add in another med to help the Tegretol but I decided to wait for my MVD. So with that high of a dose, if the pain had improved, I could have very likely been experiencing smaller shocks and just not have felt them. I'll never know for sure. Stay strong and be sure you are doing all that you can to take it easy and let your body heal.
Who was your surgeon?
Laura said:
mybell said:If your pain is less than before, I'd say that you are at least partially successful at this point and will likely improve from this short time out. FYI - I was on 1200mg of Tegretol at surgery time AND I was having breakthrough pain pretty badly the weeks before surgery. My neurologist was about to add in another med to help the Tegretol but I decided to wait for my MVD. So with that high of a dose, if the pain had improved, I could have very likely been experiencing smaller shocks and just not have felt them. I'll never know for sure. Stay strong and be sure you are doing all that you can to take it easy and let your body heal.
I’m similar to you, 1200 Tegretol and having breakthrough shocks, but I was on it longer than with previous attacks.
My surgeon was Sekula in Pittsburgh, surgery was April 14. Now I’m on 600 mg, will start to decrease very slowly in another month. If it doesn’t get any worse I’m very happy. The larger doses of Tegretol and the fear of adding more meds was my biggest problem.
My surgeon was Dr. Ken Casey. He is outside of Detroit and is well-known as an expert with TN. He co-authored the book "Striking Back". My surgery was in Oct 2013. I am pain-free and med-free and had no complications. I highly recommend Dr. Casey. Some of his other MVD patients are in this group.
Yes, I know if Dr. Casey, saw his excellent YouTube presentation. But he was a bit too far away from me. If I need another round, I may seek him out. Dr. Sekula does a lot of MVDs, he’s now the go-to guy in Pittsburgh and worked with Janetta for many years, plus he doesn’t think he knows everything, refreshing in a surgeon.
I will bet that Dr. Casey knows Dr. Sekula well. Dr. Casey also trained and then worked with Janetta in Pittsburgh for years. I'm glad you saw that You Tube presentation - it was wonderful for me when I was deciding what to do. I think you were in good hands and I bet you will turn a corner soon. I will pray for you.
Help…I am 10 weeks out of MVD surgery and my pain is now increasing, as are the meds, I was on 600 but now am at 800. I was never pain free. I really can’t take the 1200 mg of Tegretol I was on for months, it made me zombie like, caused double vision, and interfered with my blood pressure meds. I am a Type 1 TN and I don’t understand why the surgery failed.