It's been 4 months since my surgery and 2 months since I made a posting. That tells you things continue to improve! I had four veins wrapped around my nerve and the surgeon was able to cut and cauterize them. This involved a lot of manipulating the nerve so I've been forewarned it will take 6 months to a year for it to fully heal.
We finally got some snow around here and it was so exhilarating to be able to shovel in the cold wind with no pain! Well, none in my face but we won't talk about my back :)! The amount of numbness in the left side of my face near the ear has shrunken - still significant on the tip of the left ear and sometimes into the temple. It's uncomfortable but not unbearable. I do find that if I get stressed out especially at work the symptoms escalate. I'm working hard not to let things get to me.
The most uncomfortable is the burning on the left side of my tongue. It doesn't exist when I first wake up most days but gradually gets worse as the day goes on - probably from drinking, eating and talking. I find a glass of wine may lessen the discomfort or at least maybe the drink calms me down enough so I don't feel it so much.
I am convinced the MVD procedure was the right thing for me. Thinking of all of you and sending positive healing thoughts.
Glad you are gradually getting better with each passing day. The cold makes mine worse so I'm glad I don't have to shovel snow but the good thing is you were able to get out there and enjoy the snow and work in it with minimal problem! Fantastic. Yes, stress makes mine worse, too. I think the blood starts pumping in my case, heart beats harder and blood pressure, etc. I have not had MVD yet and so my cerebellar artery contacts the TN nerve bilaterally. I hope I can find a surgeon to do the surgery. So far I'm struck out with any who want to take on a type 2 TN patient with other issues ...gets them worried. Wish I could find a courageous one who wants to help! Again, good luck with each passing week with more and more improvement. Good to hear from you.
Its been a year since my MVD and I still feel pinches on my left side specially on my forehead and head…and it gets worse when Im in alot of stress…and of course I get very nerveous…but beside those things most of the time feel fine…I say that I am about 80% better and u will too…with the help of God we will make it…I want to enjoy my life, my family and specially my grandkids…
Hello Grandmasdream! It was so good to read your messssge & I am happy for you.
I am 5 months postoperative MVD & feel great. I share your gratitude for where we are today.
Debbie, so nice to read your update!
I’m very happy for you, and wish you continued well being.
I can’t wait to be able to enjoy a glass of wine again! ; )
Take care of you and please keep updating!
(( hugs )) Mimi
I was hoping that, when I opened your posting, it would be a positive one. My MVD was 3 months ago and I too am doing well. I have no TN pain except for little twinges in my teeth but did have one painful experience when I bit down on a hot piece of meat. The pain shot from my tooth up through my nose. Scary.
Last week I met a man who had his MVD 15 years ago and he was still pain free. That gives me hope for the future.
Hi Mimik!! I had my MVD a year ago feel good umost of the time… I too feel shots and tingles and flashes…the person u met did u asked him what does he feels after all those years…it would be nice to know to have hope .thanks!!!
We were in a busy restaurant so I could not ask him as many questions as I would have liked but he said he was fine and pain free. I tend to believe that the people for whom the MVD was successful stop using this site and therefore we do not receive the positive reinforcement that many of us need. In my case, I keep looking for someone to say that it really is true that the nerves took a year to heal and then everything was fine but all I see are those of us who are still waiting for the twinges to be completely gone. I do consider my MVD to have been a success because the shocks have stopped and I am pain free. But with every tiny twinge, I start to imagine TN again rearing its ugly head. Let us promise that when we are completely healed, we will return here to tell others.
Delia Osuna-Orozco said:
Hi Mimik!! I had my MVD a year ago feel good umost of the time.. I too feel shots and tingles and flashes....the person u met did u asked him what does he feels after all those years...it would be nice to know to have hope .thanks!!!
Thank you so much for posting all of these positive things. I have read a lot of negative stuff and it scared me really bad. As of right now I am pregnant with my first child. I’m having a hard time dealing with this… But I do know in the end it will be worth it. I will have the baby in September and then my MVD in October.
Hi Debbie,
You are the first person that I have noticed has mentioned the fact that one side of your Tongue burns. My tongue burns tingles and feels like I am touching it to a battery. It has a consistent pattern usually starts up in the wee hours of the morning while I’m sleeping and carries on thru out the day. Consistently this relates to my scalp pain. Tongue tingles equal more and extra Scalp pain for me. My doctors have no idea and cannot tell me if there is a true relation. Did this occur before your MVD?? & after??.
I am almost 8 weeks post op MVD. I am better about 50% most days. I am glad I had the surgery and feel that it has me met my goals. Being that my symptoms and problems were so complex my doctor felt that the surgery would help but not fix everything.
Healing together, Tree
afer a year of my MVD my scalp burns and tingles in the morning when I wakw up and sometimes at night my dr sais that the nerve is very stubern and sometimes takes a long time to heal my nerve was tangle around with an artery .....I have days with absolutly no symptoms and other OMG It pinches all over my left side( the bad one) and sometimes the right side also....my dr told me the same thing it will take the hard pain away but it will not fix it is just a stan by...
Before my surgery the my pain (electrical shocks) was center in my forehead and my scalp only.... and when I touched my nose little shock ran up toward my forehead...but not my tongue and now after the surgery I sometimes feel discomfort all over my face and head but just discomfort not pain and of course I get very nervous and even cry..but I got to keep on going for my family I have 2 beautiful grandkids and onother one on the way so this makes me very happy and gives me strengh to keep on.....always hoping and praying to God that this infernal sickness never comes back....<3
I agree with MimiK. Those individuals who have had successful results don't tend to post and that's one of the reasons I have made a committment to continue to post long term. Since having the surgery I have had two people tell me of success stories, both colleagues through work. One individual's father had the MVD over 10 years and has no pain or at least not enough to complain. The other had a nephew who had the procedure 14 years ago when he was in his teens and is pain free today. Regardless, it is probably unreasonable to expect to be in the same shape I was in when I started with symptoms over 10 years ago because the rest of my body sure ain't the same, but I feel I have my life back and I can actually hug and play with my grandkids again!
Best of luck to both of you.
MimiK said:
We were in a busy restaurant so I could not ask him as many questions as I would have liked but he said he was fine and pain free. I tend to believe that the people for whom the MVD was successful stop using this site and therefore we do not receive the positive reinforcement that many of us need. In my case, I keep looking for someone to say that it really is true that the nerves took a year to heal and then everything was fine but all I see are those of us who are still waiting for the twinges to be completely gone. I do consider my MVD to have been a success because the shocks have stopped and I am pain free. But with every tiny twinge, I start to imagine TN again rearing its ugly head. Let us promise that when we are completely healed, we will return here to tell others.
Delia Osuna-Orozco said:
Hi Mimik!! I had my MVD a year ago feel good umost of the time.. I too feel shots and tingles and flashes....the person u met did u asked him what does he feels after all those years...it would be nice to know to have hope .thanks!!!
My tongue does burn on the left side. I started to have symptoms in my tongue about 4 months prior to my surgery - about the same time my eye started to bother me too. The neurologist said the tongue couldn't be related to my TN because a different nerve controls the tongue. My dentist disagreed since the tongue typically gets numb when they shoot the nerve with novacaine for a procedure. Regardless, the surgeon told me that was more typical of Type II symptoms and may not resolve with the surgery. I sometimes feel it is actually worse post surgery and it's possibly a result of 1) no other competing pain so I focus on it more, 2) since they cut and cauterized 4 veins is it possible one of the other veins has now expanded or has additional pressure getting all the blood out of my brain and that has "impinged" the nerve handling the tongue, or 3) it's possible the nerve still has to heal and it'll continue to improve.
Regardless, it's not enough to consider another procedure and I'm confident it will continue to improve - there are times I don't even notice it.
Tree69 said:
Sounds very similar to my situation. Is your tongue involved? Did you have the symptoms prior to your MVD?
Congratulations on the baby. I can't imagine going through this while being pregnant - there is no greater joy than the birth of your first child (although grandkids come REAL close because there's no pain involved!) I looked on your page and since I live in Denver I can assure you both my neurologist and neurosurgeon have told me altitude has a lot to do with the amount of pain. In fact, I finally got a definitive diagnosis after 10 years when I returned from a trip to Europe. So stay on the ground and be careful you don''t visit any mountains and best of luck on your delivery and upcoming surgery.
Katie said:
Thank you so much for posting all of these positive things. I have read a lot of negative stuff and it scared me really bad. As of right now I am pregnant with my first child. I'm having a hard time dealing with this... But I do know in the end it will be worth it. I will have the baby in September and then my MVD in October.
Hi Gradmasdream…its nice that u found people that had been pain free for such a long time it is comforting to know that we provably have a chance…I wish I could fine someone here in my city that had the procedure succefully and talk about its experiences…but up to now I have not met anyone with this sickness…I am glad that we can enjoy our grandchildre without pain lets hope and pray that we can keep on doing it…<3
It helps to know this information. My tongue only started up about a year ago about the same time my scalp went crazy with extra unbearable pain. My scalp pain started about the same time as my face pain about 15 years ago. Gradually got worse over the years. Never new that it was all related till I got diagnosed a year ago this month.
I had two vessels on my TN. One had done more damage then the other, he said because it had been there longer. No entanglement. He moved vessels and padded the TN with shredded Teflon.
After the surgery my tongue tingles are not as strong. I used to be able to rate them from mild to strong. Now the sensation feels different, but still happens. It still seems to correlate with the intensity of scalp pain that comes on in the next 12 hrs. following. Keeping a journal has been a pain, but it has helped me track my symptoms and be confident about listing them.
"I guess one never knows how strong they are until there is no other choice"
I too am about 4 months post MVD, months since last post and am doing much, much better. Very occasional twinges or pain to left ear/jaw and tingling to face, but tolerable and on no meds! I had humbness to my teeth and tongue from surgery that has also resolved for the most part. I pray that thinsg stay like this forever.
Best wishes to all who suffer and have fear of the return of symptoms.
