Hello..I am new to this forum so I will thank everyone ahead of time for their imput. I have typical TN and was Dx three years ago. To make my story brief I started to take Neurotin and gradually the dose just kept on increasing till I reached 2100mg daily. I was completely mentally numb from this medication. My neurologist gave me the name of a neurosurgeon and after several weeks of research I decided to go for the MVD. Before the surgery I weaned off the Neurontin because I developed neuropathy in my right lower leg and two fingers in my left hand. I also developed bilateral tinnitus..Anyway, I had MVD surgery 10/9/12 and was completely pain free for 4 glorious weeks. The NS found found one vein wrapped around the nerve which he cauterized and removed and 3 adhesions. My pain returned as I said and I would call it a pain level of 5 using pain scale 1-10. I usually get a daily episode or I have had days where I was pain free for 4 days or on a rare occassion got 2 bouts in one day. I am very confused if my MVD was successful or not. I am now 13 weeks post op and confused. I have read that If you develope pain after surgery its a failure or some say its normal healing. My question is overall would you say this is a normal process that I am having and maintain a positive attitude. I do have an appt. with NS next week so maybe someone could help me form questions for him.
I am sorry you are having pain post-surgery. I was just diagnosed at the end of August. I am already up to 1200mg of tegretol a day and hate being tired all the time. I have an appointment with a neurosurgeon on the 16th, but I want to wait if possible for at least another year before doing surgery. I want to see if some other meds might not make me so tired and will work. I am curious about "normal" pain post MVD as well. I am trying to mentally prepare myself for it WAY ahead of time. I am going to friend you and please keep me posted on what the neuro says. ((((HUGS))))
Mat, I would most definitely stay positive! The damage to your nerve took some time and its only reasonable to think it would take some time to heal. My neurosurgeon says to picture your nerve like a garden hose with a kink in it, eventually the kink works its way out, but it takes time.
Each one of us has a different experience with mvd, I have yet to have mine done…waiting list.
But by reading many stories of people who have gone through it, each has healed differently and in different spans of time.
Rest, and let your body heal, positive thoughts!
Mimi
So sorry to hear that you have TN but what I have learned after all this time is try to take control over the pain and not let the pain control me. What I mean is that don't let it stop you from everyday life. Its extremely hard but you have to try. If you isolated yourself and stop doing things that once made you happy you will become even more depressed..Everyone has a hard time with the medications. Finding the right one or cocktail and copying with the side effects. I just had MVD after being Dx three years ago. I really wished that I didn't wait so long. For most its your best chance for this horrible disease. My pain level right now is half of what it was. From what I have been told from this site the pain can be very normal due to the nerves trying to heal. I too have an appt. with my NS 1/16 so I will get more info on my progress. Sadly, he never gave me info on all the possibilities so I have been a little distressed over it. You read that after MVD surgery some people have no pain at all or if they have pain they call the surgery a failure. If only we had a crystal ball !!!!
Donna Cook Turnage said:
I am sorry you are having pain post-surgery. I was just diagnosed at the end of August. I am already up to 1200mg of tegretol a day and hate being tired all the time. I have an appointment with a neurosurgeon on the 16th, but I want to wait if possible for at least another year before doing surgery. I want to see if some other meds might not make me so tired and will work. I am curious about "normal" pain post MVD as well. I am trying to mentally prepare myself for it WAY ahead of time. I am going to friend you and please keep me posted on what the neuro says. ((((HUGS))))
Makes total sense. Going to NS 1/16 so we shall see what he has to say. He really didn't discuss much after surgery but that is partly my fault. I had just asked him with my 2 week follow-up what my chances were to remain pain free and he stated that I had a 98% chance of having no future pain so I did not really ask anymore questions like I should have. When the pain started 4 weeks post op I called him and he just said that he wasn't worried about it....I will let you know what happens after my appt. thanks again for your kind words
Mimi said:
Mat, I would most definitely stay positive! The damage to your nerve took some time and its only reasonable to think it would take some time to heal. My neurosurgeon says to picture your nerve like a garden hose with a kink in it, eventually the kink works its way out, but it takes time.
Each one of us has a different experience with mvd, I have yet to have mine done..waiting list.
But by reading many stories of people who have gone through it, each has healed differently and in different spans of time.
Rest, and let your body heal, positive thoughts!
Mimi
After my first MVD surgery in 2010 I too had a vein wrapped around the nerve and had continued pain. The neurosurgeon recommended neuromuscular massage. It worked wonderfully and the pain was completely gone within two months. The massage therapist explained that my facial muscles had learned to be tight and balled up due to the pain. The massage helped the muscles to re-learn how to be relaxed. While I'm not sure this would work for you, it is probably worth a try.
Thank you for the suggestion. When I see the NS this week I will ask about it. Worth a shot !!
Liliacatnap said:
After my first MVD surgery in 2010 I too had a vein wrapped around the nerve and had continued pain. The neurosurgeon recommended neuromuscular massage. It worked wonderfully and the pain was completely gone within two months. The massage therapist explained that my facial muscles had learned to be tight and balled up due to the pain. The massage helped the muscles to re-learn how to be relaxed. While I'm not sure this would work for you, it is probably worth a try.
Mat stay positive about your surgery. I experience something very similar with my surgery in April of 2012. I was doing well until about 3 weeks post op. Suddenly the pain came back and was worse than before. (I had Type 2 TN as well as Glossopharyngeal Neuralgia)I went back on Tegretol and over the next year I weaned off where I am now not taking any meds. You will get better and stay possitive. Some post op teatments that helped my was Pepermint Oil on my skin alon V2 and V3 (make sure not to get this in your eye)and getting a good night sleelp. Stay away from your triggers. The biggest help was to get out into the puplic and be with freinds. Possitive attitude is the best thing for healing. I was in a dark place for a while but once I snapped out of it I finally began the heeling process. The healing process does not happen immediately after surgery. I beleive that they nerves are inflamed and need time to calm down before they truly start healing. “Never, never, never give up” Winston Churchill
Thanks alot for the encouragement. I totally agree with you on keeping a positive attitude. I also was in a very dark place because of this life altering disease. It takes a lot of mind control to maintain a positive outlook and I am tired of being depressed and not living a normal life. I will try the peppermint oil..thanks. I do not have the usual triggers like most. My pain is episodic. It just comes whenever. I can brush my teeth rub my face etc. and it won't bring on an episode. Never was like that. The only two things that I can say will bring on an attack is the wind and alcohol. Thanks again for your suggestions.
Mark said:
Mat stay positive about your surgery. I experience something very similar with my surgery in April of 2012. I was doing well until about 3 weeks post op. Suddenly the pain came back and was worse than before. (I had Type 2 TN as well as Glossopharyngeal Neuralgia)I went back on Tegretol and over the next year I weaned off where I am now not taking any meds. You will get better and stay possitive. Some post op teatments that helped my was Pepermint Oil on my skin alon V2 and V3 (make sure not to get this in your eye)and getting a good night sleelp. Stay away from your triggers. The biggest help was to get out into the puplic and be with freinds. Possitive attitude is the best thing for healing. I was in a dark place for a while but once I snapped out of it I finally began the heeling process. The healing process does not happen immediately after surgery. I beleive that they nerves are inflamed and need time to calm down before they truly start healing. "Never, never, never give up" Winston Churchill