Has anyone had a surgeon go 'back in' a recent MVD? I just had my first MVD surgery on 12/24/12. I had been feeling pretty good the couple weeks before surgery, with less severe and less frequent pain attacks (which makes going into surgery a bit more scary while second guessing that maybe I should live with this as is.) Immediately after surgery I had a few pain attacks. The surgeon seemed really surprised and thought the surgery went 'text-book'. He saw the vessel compressing the nerve and moved it and added the padding. He did not see any other places with compression. I was disappointed to say the least. He said it could take a few days to see if the nerve would calm down or that he could easily 'go back in' the fresh wound and look again to see if he could find anything else. Has anyone done this? He did not think he missed anything but was really curious why I would still have pains. I know you can have a second (or more) MVD surgeries, and makes sense that it would be easy while the wound is not even healed up, but I haven't heard of anyone else doing this. I don't really know how bad the pain attacks are yet post surgery since I've been mostly sleeping and resumed TN meds...I just know the twinges are there and some attacks yesterday.
hi there SoxFan, we havent spoken before (dont know why?) but i was interested in your comments. i had my MVD on 28th nov. all has been going so well. its been wonderful, like being given a second chance, i have a spring in my step, and a twinkle in my eye, and feel in touch with life once again....
BUT last night exactly 4 weeks after my operation, i touched the side of my face and had a "zap" it was in a different place to where i used to get them, now i am scared, will it come back??? did the operation not work??? i am so depressed. what now???? anne
Hi there SoxFan, I just had an MVD in October and I still get a little zap once in a while, I had some lightning strike pain, but 90% of mine was ATN. You didnt say which type of pain you are having or else I am missing what you said. Anyhow, I actually had worse pain after the surgery for about a month, then it started calming down, and now I get a twinge here and there and some occasional tooth pain. The pain on a scale of 1-10 is about a 2 as opposed to the pre-surgery kill me now pain.
I was told it can take up to a year to completely calm down, and also due to how bad my ATN was ,, my neurosurgeon felt he would get me 90% relief which is about what he did if not more. I sure can live with this now!!
Feel free to message me if you ahve any questions, but it sounds like this is normal and with some time passing it will go away
Wendy
I'm floored that your surgeon did NOT tell you that it takes up to a year for nerves to heal
at my 11 week mark -- I had 3 weeks of pain that was not as bad as original
then back to normal good
Please do not consider MVD for a year - and get a different surgeon!!!!
Thanks for the comments. I did not have the surgeon go back for a 'second look'. After the first couple days of post-op TN attacks, I have not had any since. Occasional twinges, but those seem to be less often and less severe. So for now...I'm declaring MVD success!
Still not sure I understand why I got that reaction or offer from the surgeon. This is an experienced MVD surgeon and he did tell me it could take some time for the nerve to heal/calm down.
Does the fear of pain returning ever go away or you just learn to cope with it?
Hi Anne -
So sorry to hear you had pain again. Any more since then? It is indeed scary.
anne morris said:
hi there SoxFan, we havent spoken before (dont know why?) but i was interested in your comments. i had my MVD on 28th nov. all has been going so well. its been wonderful, like being given a second chance, i have a spring in my step, and a twinkle in my eye, and feel in touch with life once again....
BUT last night exactly 4 weeks after my operation, i touched the side of my face and had a "zap" it was in a different place to where i used to get them, now i am scared, will it come back??? did the operation not work??? i am so depressed. what now???? anne
I think any of us with severe TN attacks will probably all say the same thing...........I think it would be at LEAST a year with no pain whatsoever (probably more like 2 or more years) to get over that fear that it will come back. Any time I feel a slight little burny/tingly feeling in my cheek, I get so nervous...........just waiting on it to come. It's like having PTSD.
My MVD was on Dec. 21. and I am slowing weaning off the Neurontin. I have a little pain around my teeth but not much. My surgeon told me that it is not abnormal to have some pain after the surgery but if it gets bad soon, to stop the medication taper for a week and call the office. If I continue to have pain after 4 months to schedule an appointment.
I doubt if anyone of us isn't afraid that the pain will return. Good luck to all of you.
I had my MVD Nov 5. I had a couple of shocks for about 2-3 weeks. Now they’re almost completely gone. The very little pain that I have had was not bad at all. BUT… I’m terrified that it will start again. I still freak out a little when something touches my cheek or when I smile or brush my teeth. It hasn’t triggered the pain like it used to, but I’m scared it will. I guess it will take time to realize I’ll be ok.
i am so pleased for you all, this terrible disease has us all scared, i still twist myself into all sorts of angles, so that the water in the shower doesn't touch my face.... and i still dont dry my face, what am i saying, i dont wash my face???? things will get better i am sure. and i love to here all your comments, its wonderful that we are here for each other....take care everyone. love to you all anne
Soxfan,
I think you made the right decision. I’ve been told up to a year as well for the nerve to settle…
Honestly I don’t think the fear will go away all together,I think with time you’ll gain more confidence and the fear will lessen as you notice the pain not reoccurring .
Hope you continue to feel better and better .
Mimi xx
hello all, i havent been online for a while....how are you going?? as you might remember i had my MVD in november last year, and things have been going okay for a while, but i have always taken medication, i never completely stopped... was down to 200ml a day but then all hell broke loose.... now up to 700ml a day and still in lots of pain, unbearable pain, going to see my surgeon on tuesday 19th. dont know what the options are for me though... has anyone had their MVD done twice? what about the gamma knife?? would love any help with this dilemma?
Of course he will tell me what can be done, but i want to know what others experiences have been.
i'm sorry I know I sound confused,, i have had a particularly bad day, was thinking today, i just want to be :"normal" I am sick of hiding my face from wind and rain, not being able to brush my teeth or wash my face, , and dont even mention going to the dentist, i have to be careful pulling clothes over my head, and i have to contort myself into all sorts of weird positions just to shower and wash my hair. i cant put make up on, and worst of all, i cant kiss my husband, this is the worst thing, i get so depressed, cant believe this is IT, from now on.... it cant be,
sorry about all this whinging, some people must be worse, but when i come on this site, i feel the love. thats what keeps me going...... hear from you all soon. take are all, love anne
Oh Anne, sorry to hear about your increase in pain. I know it’s discouraging,
I know I have read of others that have had a 2nd mvd on same side eventually. Someone posted about it recently.
I wish my brain worked so I could tell you “who”… Sigh.
I’m sure your surgeon will present you with some options and might have better insight as he saw what was going on with your nerve.
In the meantime I believe that “this isn’t IT” we must always have HOPE! The alternative is unacceptable!!
Dig deep for those positive thoughts and believe you will get better! I’m sending you love and prayers, your allowed to whine! Take care of you and let me know how you make out on Tuesday!
((Hugs)) Mimi
My surgeon said it could take up to 2 years to heal! 1 week after sounds like a really short period of time. i found that my TN was worse for the next 2 months after that!
Mimi, I just read a post by Heather Calkins - she has had two MVDs, the last one being recently. Anne, you might like to message her and see what her story has been.
((hugs)) to everyone in pain . Gen.
xx
Thx Gen! That was who I was thinking of!! 