I have had the MVD surgery and it worked wonderfully. Very rarely do I get what I call “twinges”, but I fear them daily. When I do feel the momentary pain I have panic attacks. I just need to know if I am the only one. Is there anyone else in remission that “freaks out” when they feel the slightest discomfort on their affected side?
I’m not fixed I’m afraid so I have no personal experience of this, but I believe it is a very common thing to encounter following surgery. I’m not sure what the best way of dealing with it is though.
Have you spoken to your GP about it? They may have some suggestions as to how to deal with it, or maybe refer you to someone who can help with it.
Either way, my thoughts are with you and hope that you can find a way to move past the terror that we all feel of an impending attack.
Much love
Gracie x x x
I just read your post and I have been wondering the same thing. I had MVD surgery this last Aug. 30. I have not had any TN pain at all, but I have the “twinges”, I have them daily. They are exactly where my TN was. My TN was on the right side of my face on the upper lip, beside my nose and across to the ear. I feel them mostly, when I lay down to go to sleep at night are sitting at the computer. I ask my surgeon about it and he said it was probably from the packing touching the nerve. He said that it would eventually go away. I am still on 400mg of carbamazapine twice daily. I have not had any pain since surgery, but I am so scared when I come completely off the medication that the pain will come back because of this. I also feel the “twinges” sometimes on the other side of my face.
A friend of mine on another site, said her husband had MVD surgery and had this problem also and she said the “twinges” left him after about the 2nd month from surgery. I also could not quite understand if the blood vessel touching the nerve was causing so much pain, then why wouldn’t the packing cause pain if it touched the nerve.
Im off all drugs and have been since a few days after my surgery. The painful twinges that I get last only seconds. They scare me more than anything. I can elicit them if I rub my upper lip on my right side= so obviously I avoid that. I get some of the same sensations on my left side and that worries me as well. Most of the time if I have pain that lasts longer then seconds on my right side its more of a soreness. It feels like I have been slapped or like your skin does when you have the flu but its only in the area that my TN affected.
Im also puzzled by how the surgery works but it works so I try to just be thankful and not think about it to much. I have found that it terrifies me to have something hit my face or to have anything sonic (dental work or electric tooth brush). I hate feeling this way but mostly I hate that no one else understands and they all think Im being silly. I think it is impossible to understand if you have never been there. I came to work every day, I tried to live my life and maybe that is why people think that it was not “that bad”- but they have no idea.
Linda Kindle said:
I just read your post and I have been wondering the same thing. I had MVD surgery this last Aug. 30. I have not had any TN pain at all, but I have the “twinges”, I have them daily. They are exactly where my TN was. My TN was on the right side of my face on the upper lip, beside my nose and across to the ear. I feel them mostly, when I lay down to go to sleep at night are sitting at the computer. I ask my surgeon about it and he said it was probably from the packing touching the nerve. He said that it would eventually go away. I am still on 400mg of carbamazapine twice daily. I have not had any pain since surgery, but I am so scared when I come completely off the medication that the pain will come back because of this. I also feel the “twinges” sometimes on the other side of my face.
A friend of mine on another site, said her husband had MVD surgery and had this problem also and she said the “twinges” left him after about the 2nd month from surgery. I also could not quite understand if the blood vessel touching the nerve was causing so much pain, then why wouldn’t the packing cause pain if it touched the nerve.
You are right, No one understands unless they have been there. I was wondering how long it had been since you had MVD surgery? I was disappointed that I had to stay on the medication but he explained it was because he did not want to take me off of it instantly for fear of withdrawal problems and he said he did not want me to have any difficulty after surgery, extra pain, or anything. He said let’s give your procedure time to heal and then we will stop the medication. It is so hard to be patient.
I had my surgery 3 years ago. I was weaned off of some meds before the surgery (they were not working so there was no need to take them). He slowly weened me off of the gabapentin because it might cause seizures if you quit to soon. You will get there. Im just happy that I finally have an outlet for people who know what I went through.
Linda Kindle said:
You are right, No one understands unless they have been there. I was wondering how long it had been since you had MVD surgery? I was disappointed that I had to stay on the medication but he explained it was because he did not want to take me off of it instantly for fear of withdrawal problems and he said he did not want me to have any difficulty after surgery, extra pain, or anything. He said let’s give your procedure time to heal and then we will stop the medication. It is so hard to be patient.
Hi Sarah,
I didn’t get complete pain relief from my MRI but I am really concerned when the pain starts to increase over several days. I start thinking about activities like brushing my teeth and washing my face and the wind. When the pain dies down, then I start to relax again. Once one has experienced pain like this, then it is normal to worry about it returning.
Liz
I have friends that dont get it. They think its rediculous that I get upset about major dental work on the right side of my mouth. I cant get them to understand. Im just so happy that I have finally found a group of people who know what it is like to have that kind of pain. Not because anyone is in pain- I hate that people have to go through this but its nice to not feel like I’m alone in my experiences and fears.
Liz K. said:
Hi Sarah,
I didn’t get complete pain relief from my MRI but I am really concerned when the pain starts to increase over several days. I start thinking about activities like brushing my teeth and washing my face and the wind. When the pain dies down, then I start to relax again. Once one has experienced pain like this, then it is normal to worry about it returning.
Liz