OK, it has been almost one year Aug. 30th, that I had my MVD surgery. I have not had one "shock" are has some might say attack since then. I do still have numbness in my tongue and lips and the "tingles" around my nose. I was wondering if anyone else that has had MVD surgery has experienced this. It also seems to be more so at night when I lay my head down are sitting back in a reclined position. Also, now I have these feelings on both sides. Just curious if anyone else has this. The numbness seems to appear more if I exercise are am more active. Even holding my two year old grand daughter and her moving around seems to cause the numbness to appear in my tongue. I am hoping this is just a side affect and maybe the pain will not reoccur because of this especially since now it seems to be happening on both sides of my face.
A lot of former MVD patients report lingering facial numbness as a side effect of surgery. Although nobody can tell your personal future, most of those whose reports I've read indicated that the tingling ("parasthesia") and numbness didn't seem to be directly related to any return of pain. Others who have been MVD patients might have different experiences to report, of course.
Go in Peace and Power
Red
Hi Linda , wow reading through your post today it was like you was writing about me , my Tammy and I have had mvd surgery as well on nov2nd 2009 and I still don’t have any feeling on my left side face , you could draw a line right down the middle of my head and I have same feeling when exercising , laiding down , any kind of stress and even Putting my hair back set of the tingles. The doctor told this is not tn and tn should never come back but unfortanly he also told that my feeling will never return ,this why only day I join this web site just to see if there was anyone else going through the same thing as my doctor told that he never had patient or heard of patient having numbness after 6 month , he actually made me feel like it was all in my head , he told me he think I had phantom pain this really upset , so after reading what you wrote I now feel a little better . Did you have major complication in your operation as when they got in and seen my nerve they found 4 blood vessel instead 1 (which most people with tn had) infused into my nerve , so 8hrs operation turn into a 13hrs op.then I had to have another op on dec 26th as there was major fluid build up. So it been a really long 2 years for me and now my doctor said there nothing more he can do , you know the hard part about it all no one can see it or understand it not even my family they try but cause there no physical evidence they think there nothing wrong. Thank you so much as now I know am not crazy.
Wow!! It has been almost 2 years since your surgery and you are having these feelings also. My neurosurgeon told
my husband and I that I would most likely have a side affect after surgery and it would be some facial numbness. He said most everyone of his patients had, had some form of numbness afterward. It was a relief to me to hear that you also have experienced this because i sometimes fear that the pain will reoccur because of these feelings or twinges. I also have a sensation above my lips that it wants to "shock" but it doesn't, like a very tiny pinch and Because of this my neuro told me to stay on a small amount of medication 200mg of carbamazepine for at least 6 more months maybe even forever. I was very disappointed, in that fact. My Primary Dr. said it was more than likely "parasthesia" and not related to the actual TN, hopefully he is right. I get so afraid, when I have these horrible feelings, that the TN pain will come back.
I, am so sorry to hear of all your complications. My TN was typical TN and was caused from one blood vessel that was putchering the nerve, some what like and arrow pushing against the nerve. I have not had one pain since my surgery but my surgeon has had me to come down very slowly off of the carbamazepine. I am coming down from 1200 mg to now 200 but come Aug. 30th it will be a year since my surgery. I had no complications from surgery and everything seemed to go like clock work, my surgery lasted 2 1/2 hours and he said, the surgery went very smoothly. I did have a very good Neurosurgeon and I had my surgery at Dallas Presbyterian Hospital, which the ICU there was wonderful. The head aches I had afterward didn't last very long and were controlled with extra strength Tylenol. By the 2nd week, I was going out for lunch with my sister, which now I know I probally shouldn't have done so, but I made it OK. I have found out though, that MVD surgery does take a long time to get over. I think I am still in the healing process, as for as where my incision is, sometimes my head gets very sore, I have a numb,(hollow) feeling above my ear and sometimes I have a clicking noise when i walk a lot from the incision.
I am so glad though, that this post seemed to help you! Your post has also helped me so much to, to know, that you also are experiencing the same feelings, and have for almost two years, and you have not had any of the horrible TN (electrical shocks). I don't think I could have made it through all of this without the help of my support groups.
Take Care and God Bless,
Linda
Thank you so much, for your reply to my post. It really does make me feel so good to know this. As, that I have been so afraid that it was the pain beginning to recur. I can handle the parasthesia, which is what my primary Dr. thinks it is. Thanks again for your posts.
Linda
Richard A. "Red" Lawhern said:
A lot of former MVD patients report lingering facial numbness as a side effect of surgery. Although nobody can tell your personal future, most of those whose reports I've read indicated that the tingling ("parasthesia") and numbness didn't seem to be directly related to any return of pain. Others who have been MVD patients might have different experiences to report, of course.
Go in Peace and Power
Red
Linda, I appreciate your discussion question on this topic of MVD surgery since I am considering surgery. I started a discussion a while ago asking everyone who had MVD surgery to comment on their experience and I had 15-20 responses. I am so happy you don't have anymore facial shocks since the surgery. I hope you receive some good feedback on your discussion question. That is what is so beneficial about this site; the sharing of all of our experiences with TN. Take care.
Jim
I had mvd surgery 2mths 2 wks ago and woke up w vertigo, numbness on my left side of my face, tongue, roof of mouth and lips also (as well as hearing loss). the numbness has lessened in area a bit but still in cheek are and below. With me its not just a numbing sensation but also burning and tingling obviously due to nerve damage. I’m not sure if the nerves are trying to wake up or it might just stay this way. My dr doesnt’ seem to positive as this is considered the 5% can go wrong in surgery. I am told by my acupuncturist that the first 3 mths are the most important for recovery and when most of your healing is done although the next 3 mths you can heal but slower. I am curious if anyone has healed from the numbness and burning sensation or is it most likely to be with you for the rest of your life. I did read this today: Anesthesia Dolorosa
Following injury to the trigeminal nerve, a painful area of numbness may develop that is diagnosed as anesthesia dolorosa. This pain is severe and constant and described as burning, gnawing, or stinging. The most common cause is from destructive interventions for trigeminal neuralgia.
Treatments: Treatment of anesthesia dolorosa is often ineffective, and medications will often not relieve the pain.
If you have already noticed a decrease of numbness within the first two weeks, then the trend is at least in the right direction. Some patients do report long term healing or further reduction of sensations like these after MVD overf 3 to 6 months.
Hearing loss could be a different matter.
Sorry I can't offer much at this stage beyond "wait it out for a while".
Go in Peace and Power,
Red
Hi, JDE
I just read your post and I wanted to reply back. It has been almost 14 months since my MVD surgery which was Aug. 30 2010. For me the numbness is slowly getting better. I still have numbness in my tongue, in the end of it mostly and at times it seems like a burning sensation, I have noticed, that when I lift something, strain a little more, are, I am just more active, my tongue will become numb. My lips and the side of my face very seldom have numbness. The numbness slowly disappears. My neurosurgeon told me to expect some numbness and he did smile and say, but,"You will get use to it", I couldn't imagine it then, but, I understand now, I have gotten so use to it I don't even notice it much anymore. This is a surgery that does take time to get over. I would say at least a year. I can now sleep on the side I had surgery on and every-now-and-then I will get the "tingles" around my nose, but, I know now what to do when I get them, I just move my neck and head around(re-position my self) hard to explain, but, you will see. I did start doing things such as riding the lawnmower at about 5-6 months out, I think that might have slowed my progress down, but, it does get better it just takes time. MVD surgery was wonderful for me as I can live now without living in fear, of the next painful attack. I have had some of the burning, twinges on the other side of my upper lip, that started about 3 months ago , but, if it continues to progress, I will consider surgery again are what ever my neurosurgeon suggests.
Take Care and God Bless, Linda
JDE said:
I had mvd surgery 2mths 2 wks ago and woke up w vertigo, numbness on my left side of my face, tongue, roof of mouth and lips also (as well as hearing loss). the numbness has lessened in area a bit but still in cheek are and below. With me its not just a numbing sensation but also burning and tingling obviously due to nerve damage. I'm not sure if the nerves are trying to wake up or it might just stay this way. My dr doesnt' seem to positive as this is considered the 5% can go wrong in surgery. I am told by my acupuncturist that the first 3 mths are the most important for recovery and when most of your healing is done although the next 3 mths you can heal but slower. I am curious if anyone has healed from the numbness and burning sensation or is it most likely to be with you for the rest of your life. I did read this today: Anesthesia DolorosaFollowing injury to the trigeminal nerve, a painful area of numbness may develop that is diagnosed as anesthesia dolorosa. This pain is severe and constant and described as burning, gnawing, or stinging. The most common cause is from destructive interventions for trigeminal neuralgia.
Treatments: Treatment of anesthesia dolorosa is often ineffective, and medications will often not relieve the pain.
Thank you Linda..definitely gives me hope which I am in need of right now. I am anxious to get back to my normal life so might be a bit inpatient thinking my recovery should be faster, but from what you tell me I can still be getting better for the next year. This is good news. I am trying to find a medium on how to take care of myself in the meantime. Still going to work to keep my mind busy and exercising for about 45 minutes 5 times a week..hopefully not to much but enough to keep myself in well being. Of course my fear is living with the burning sensation as it is quite dibilitating but know that staying positive is half the battle. Did you experience vertigo at all?
Thank you again, Janet.
Hi, It sounds like you are doing good! And, having a positive attitude helps so much because of the time it takes to heal. I did have some vertigo, yes. It did seem that my vertigo didn't last but a few weeks, but, I have heard of others who have had vertigo that did last longer. I did have more of a burning sensation in my mouth and tongue,at first, very aggravating, but it slowly did improve.
My surgeon told me after surgery, he was keeping me on a smaller dosage of tegretol for about 6 months, because , he said after surgery it would take awhile for the trigeminal nerve to heal from all the irritation it had. He said I could have the TN pains from it just healing. I was very disappointed, but, with absolutely no pain, I couldn't complain and from coming from 1200mg a day of tegretol and still break through pains, I was doing great. Everything he told would happened, as, just has he said.
I have friends on another support site that have had the surgery since me and it seemed to take a little longer for them to recover, at first, but, they are doing good now. One of my friends and I are doing just about the exact same as for as recovery. She and I both are taking a very small amount of carbmazepine still for the twinges and small burning sensation's that we have above our lips, but, we have decided we are so much better than we were that we can deal with it now. I take 100mg of medication and probably always will if the pain doesn't start back up again. Oh, yes, if you exercise very much you might notice a clicking noise in the area of your surgery. This happened to me, and the surgeon told me to cut back on my walking and take it easy for awhile. I did and I haven't noticed it in a long time now, so hopefully that as stopped to.
Good Luck to you, Linda
JDE said:
Thank you Linda..definitely gives me hope which I am in need of right now. I am anxious to get back to my normal life so might be a bit inpatient thinking my recovery should be faster, but from what you tell me I can still be getting better for the next year. This is good news. I am trying to find a medium on how to take care of myself in the meantime. Still going to work to keep my mind busy and exercising for about 45 minutes 5 times a week..hopefully not to much but enough to keep myself in well being. Of course my fear is living with the burning sensation as it is quite dibilitating but know that staying positive is half the battle. Did you experience vertigo at all?
Thank you again, Janet.
This post really has helped me thank you! I am Nicole in VT and I just had my surgery two weeks ago. I am totally numb on the right side including my eye, tongue, lips and throat. No ear issues. Little pain. I am scared. Worried I will be left with this paralysis forever. Trying not to panic. And grateful I found this blog. TY! Nicole at nicolemardin@hotmail.com
Linda Kindle said:
Wow!! It has been almost 2 years since your surgery and you are having these feelings also. My neurosurgeon told
my husband and I that I would most likely have a side affect after surgery and it would be some facial numbness. He said most everyone of his patients had, had some form of numbness afterward. It was a relief to me to hear that you also have experienced this because i sometimes fear that the pain will reoccur because of these feelings or twinges. I also have a sensation above my lips that it wants to "shock" but it doesn't, like a very tiny pinch and Because of this my neuro told me to stay on a small amount of medication 200mg of carbamazepine for at least 6 more months maybe even forever. I was very disappointed, in that fact. My Primary Dr. said it was more than likely "parasthesia" and not related to the actual TN, hopefully he is right. I get so afraid, when I have these horrible feelings, that the TN pain will come back.
I, am so sorry to hear of all your complications. My TN was typical TN and was caused from one blood vessel that was putchering the nerve, some what like and arrow pushing against the nerve. I have not had one pain since my surgery but my surgeon has had me to come down very slowly off of the carbamazepine. I am coming down from 1200 mg to now 200 but come Aug. 30th it will be a year since my surgery. I had no complications from surgery and everything seemed to go like clock work, my surgery lasted 2 1/2 hours and he said, the surgery went very smoothly. I did have a very good Neurosurgeon and I had my surgery at Dallas Presbyterian Hospital, which the ICU there was wonderful. The head aches I had afterward didn't last very long and were controlled with extra strength Tylenol. By the 2nd week, I was going out for lunch with my sister, which now I know I probally shouldn't have done so, but I made it OK. I have found out though, that MVD surgery does take a long time to get over. I think I am still in the healing process, as for as where my incision is, sometimes my head gets very sore, I have a numb,(hollow) feeling above my ear and sometimes I have a clicking noise when i walk a lot from the incision.
I am so glad though, that this post seemed to help you! Your post has also helped me so much to, to know, that you also are experiencing the same feelings, and have for almost two years, and you have not had any of the horrible TN (electrical shocks). I don't think I could have made it through all of this without the help of my support groups.
Take Care and God Bless,
Linda