Frustrated!!
 

I am currently 4 weeks post mvd. Can anybody tell me how long the facial numbness lasts? Also, my jaw on the left side, which is where the TN was affecting me, doesn't seem to open all the way. Has anyone else experienced that? If so will that go away with time? Any advice would be appreciated.

Thanks

hello Tracy I am glad you found your way here . I have no experience with MVD but I knowplenty of people that have gone threw MVDs. This is from the stickies at the top of this page ... Ella's MVD diary (it is a good read with lots of info ) --- page 1 -
5 1/2 weeks since my MVD.
I was feeling a bit tender around the base of my incision on Saturday evening and when I felt it, there was a small lump there. I'm not at all sure what that could be. My incision seems to be closed and healed. I wonder if it is an infection starting or maybe a swollen gland. I was about to go to the emergency dept. of the hospital I had the surgery in but then the thought of sitting there for hours ended that idea. I waited till Sunday evening and after I came back from a wedding I attended in the afternoon I called the after hours hotline for my medical centre and spoke to a RN (Registered Nurse). After asking me many questions, she didn't feel I had to go to emerg but that I should have it check by my doctor in the next 24 hours. So this morning I will call and hope to get an appointment today (not so easy here in Ontario).
It is swollen and tender but no leakage or fever mmmmmm......wonder what it is. Things were moving along nicely. I hope this is just a small blip. also on page 2 of Ella's MVD diary -- I am always available to help or ask questions. I do not pop in here as often as I should. If you would like to reach me, please send an email to ellacjn@gmail.com
allot of us are on face book and some leave email or way to contact . I know Ella will gladly respond if you send her a email.so dont be shy please feel free to contact her. I am sending you positive healing thoughts and pray your MVD continues on a smooth path to successful ending. we are all here to help each other or at least try the best we can .If you have more questions, want to chat ,vent or need more contact with others who have had MVD do not hesitate to post here and me or one of us will be along to help. :grouphug:
Peace
BMW

Thanks for responding and for the info. I will read Ella's diary for sure!! The good news is the TN pain seems to be gone and after being on Norco for 15 months I finally stopped it 2 days ago. Knock on wood no withdrawal symptoms!! I started weaning off my other meds, but I'm on such large doses I know it will take a long time. My daughter is getting married in October and I'm hoping to be off of them for good by then. I think the hardest thing with having TN is most people don't understand the amount of pain you are in. You're not wearing a cast or any other outward sign that you have a problem and they just don't get it. I actually had 3 veins wrapped around my nerve, which my dr. said was very rare and it involved manipulating the nerve tremendously. I'm hoping all of this will resolve once the nerve calms down and repairs itself. I'm so glad I found this site and hope to get more input as well. Thank you so much for your prayers and your offer for yourself or someone else to just listen. It really means the world to me.

A Very Thankful Newcomer
tracyh

You are most welcome. Congratulations on daughter getting married :) I know it does not seem like much ya know talking/venting but it really helps. None of us are doctors or anything. But I know for a solid fact T.N. sufferers hide as much of this horrible monster from our family and friends as much as we possibly can. We feel like a burden and no one can see the monster chewing on your nerves sort to speak . and we sit and we wonder and are afraid . that is why Neurotalk is such a great place . I found a "new home" when i found this place and I hope you do too. I will contact those who have had MVD and send them here to reply. it may take a bit being the holiday is coming and such so be patience . I will be around tho . Blessings to you and hope to get others here sooner rather then later.
Peace
BMW

I didn't have any issues with numbness and jaw opening, so I'm not able to answer either of those questions for you. I hope they resolve soon. Are you taking B-12 to help your nerve heal?

I wish you the best of luck in getting off all your meds and being pain free. My MVD was 8 months ago and it helped my pain somewhat, but I'm still taking several prescriptions and getting nerve blocks every 6 weeks. I hope your results are better than mine.

Here's wishing you a speedy recovery. I hope your TN goes away completely and forever!

I'm sorry you're still having to take medication. That's the main reason I wanted the surgery. I didn't know about the B-12. Is that just a supplement that you take?

I have noticed, today especially, some twinges in my teeth. I'm hoping that's just from the nerve repairing itself, so I would definitely be open to trying anything to speed up the recovery process!!

Thank you so much for replying!! I'm hoping I won't be one of the 2% that had this numbness forever. It's the whole left side of my face, but I suppose it's better than having all that pain. Maybe I'll just have to get used to it, but it's just soooo annoying.

B-12
 

B-12 was one of the first things they checked when I started having facial pain. I was in the low normal range and my neuro told me to take 1000 mcgs per day. It's supposed to help keep your nerves healthy. I'm now taking 500 mcgs every other day and my levels are in the high normal range.

I hope your numbness goes away. That would be a very weird feeling. Did you have any twitching with your TN? I have twitching in my cheek, lip, nose and under my eye. It's usually not visible, but I can feel it. If I mention it, the doctor just says something about it being a different nerve and won't give me any explanation.

I hope your recovery is going well.

I never did have any twitching. Just some pins and needles where the numbness is. I'm hoping it's like when you go to the dentist and that means the feeling is going to come back soon.

I am going to try the B-12. I also found out fish oil is supposed to help keep nerves healthy, so I'm going to add that in as well.

I actually e-mailed Ella and got some reassurance from her that I'm just beginning recovery and to be patient with healing. That the numbness takes quite awhile to go away.

I'm going next week for my 6 week follow up and hope to find out this jaw pain is normal!!

I hope you're doing well also. Hopefully those injections will start to help!!

I did not have MVD as an option but I did get twitching ALLOT . I thought others could see my lower lip and right cheek twitching and spazing out but they could not see it . I was told it was /is nerve misfiring. I dont have it happen so much any more. I too also take vit B12 since I first broke lower jaw in 99. It was one of the first thing dr. reccomended for nerve growth.Oh for some T.N folks numbness is better then the eletrical zapping but both suck. Glad Ella got back to you. Take it one day at a time. Sending low pain and some good days . Peace. BMW

I guess the twitching isn't so bad, but it can get pretty annoying. At my next appointment, I'm going to ask about Botox injections. I wanted to try Botox for facial pain, but was told that my insurance wouldn't cover it because I didn't have classic migraines. Maybe they'll do it for twitching.

I have an atypical form of TN with mild to moderate constant pain on both sides that moves around every few minutes. I finally had a high-resolution MRI and was offered surgery because they saw a vein touching my nerve. But when they went in, they found an artery looped around the nerve. The weird thing about the surgery is that it was done on the right, but the left-side pain was almost completely gone after the surgery and the pain on the right is still there.

Tracyh, are you hanging in there? I hope every day of your recovery is a good one.