Have not been on here for a while, wondered what symptoms people have had when TN has returned after MVD. I had my op in Jan 2010 and it was a success. Now starting to get frequent niggles in my face. Hoping it's not coming back!!
Tell us about "niggles" . Do you mean low-level twinges of pain? Or something else?
Regards
Red
Hi Richard my niggles vary from a tingling (which is how my TN started) to low stabbing pains. Just as though to remind me it’s still there. Have been virtually pain free since op. Tracey
Perhaps you need a low dose of meds? You should talk to your doctor. It's possible that you can get by with a very low dose, which will keep those niggles away, and since it's so low it won't give you too many side effects.
Maybe it's just a fleeting thing. I hope so!
I would agree with Crystal on this one, Tracey. It's not unusual for MVD patients to find that although they are much improved, they still need some low level of meds in their systems, to control breakthrough pain. Contact your primary physician or the neurosurgeon's office that did the MVD, and schedule a follow-on appointment.
Go in Peace and Power
Red
So sorry to hear this. I am not sure about niggles, I am thinking it might be like the little twinges I got are the little feelings of maybe a hair moving around on your face. My surgery will be one year old come Aug. 3oth. I have never been off of my medication and I am sure now I will never be. I missed one of my tablet’s and I awoke with a dull headache this morning then 2 hours later I had about 4 mild strikes, then later about 5 or 6 strikes, they were not that bad but I took an extra 200mg of carbamazepine. I’m sorry to say I am afraid my TN pain is slowly coming back again. It is also happening on the other side of my face now to.
Definitely time to call your doc, Linda. Keeping the breakthrough pain under control will help you to avoid going into full-fledged TN attacks. He or she can help you do that.
Likewise be advised: though nobody would want to do multiple operations voluntarily, some patients find that they become necessary. When needed, a second MVD is sometimes successful for a longer time than the first. Teflon can shift around in your head, leaving a compression to do its evil work. MRI may show what's going on, or whether anything new has developed. Go talk with your doc, Hon.
Regards, Red
Hello everyone,
I just read these posts and though I would contribute. I had MVD in April and have never been quite pain free, but much, much better. I am off all medications and am very happy about that. However, as time goes on I am beginning to feel more and more pain in my face as if the TN is coming back. I have headaches most of the time, just on the side of the TN. I have sharp "stinging" and stabbing pains in my face, not as bad as before, but they seem to get worse as time goes on. I have my final appointment with my dr next week and they will also do an MRI, I'm hoping this is normal and the pain will stop.
Just thought I'd add my experience with it in here so that you know your alone.
Wishing everyone the best!
Donna
Hi, Donna
I found your posts so interesting. In just a few days it will be a year since my MVD surgery. I have experienced the exact same things that you just described. I have been told that by Aug. 30th I could stop my medication but because of the "stings" I continue to get, I have chosen to stay on my medication. I have also had friends on another support site that have had surgery since I have, that also experienced the same "stings "and the "tingles" along side of the nose, also. Some days they are worst than others. A friend of mine said she went on a strict low-calorie diet for two months and so for she hasn't had any stings for a month now. I am trying to do this now myself.
I have had cat scans done since my surgery and so for every thing looks good, so, I am not complaining. Thanks to the surgery, I am not where I was this time last year.
Donna Mills said:
Hello everyone,
I just read these posts and though I would contribute. I had MVD in April and have never been quite pain free, but much, much better. I am off all medications and am very happy about that. However, as time goes on I am beginning to feel more and more pain in my face as if the TN is coming back. I have headaches most of the time, just on the side of the TN. I have sharp "stinging" and stabbing pains in my face, not as bad as before, but they seem to get worse as time goes on. I have my final appointment with my dr next week and they will also do an MRI, I'm hoping this is normal and the pain will stop.
Just thought I'd add my experience with it in here so that you know your alone.
Wishing everyone the best!
Donna
Thanks, Red
I did call my surgeon in fact and he just suggested talking with my neurosurgeon about medication, pain management. I have heard that a second MVD is usually more successful, but, this time I think I might try another procedure if necessary. I am glad though I did have MVD, for the relief it as given me, just hope it lasts a little while longer.
Thanks, Linda
Richard A. "Red" Lawhern said:
Definitely time to call your doc, Linda. Keeping the breakthrough pain under control will help you to avoid going into full-fledged TN attacks. He or she can help you do that.
Likewise be advised: though nobody would want to do multiple operations voluntarily, some patients find that they become necessary. When needed, a second MVD is sometimes successful for a longer time than the first. Teflon can shift around in your head, leaving a compression to do its evil work. MRI may show what's going on, or whether anything new has developed. Go talk with your doc, Hon.
Regards, Red
My GP wanted me to go back on meds to see if it would help, but I can't stand the thoughts of going back on it, so I'm going to try to deal with it until I can't. I'm hoping it will get better with no meds.
Like you I am in a much better place than a year ago or even 6 months ago, although I would like to be pain free...:)
Some days are worse for me than others, if I get nervous or stressed I have more stings and tingles and pain.
I'm wondering why the low calorie diet helps?? Worth a try, I need to lose some weight anyway.
Thanks for the information.
Take care
I do hope it gets better for you soon. I'm, not sure how the diet could help either, but, I just finished a bowl of blue bell ice cream, ha! I am not very good at sticking to diets. I am not sure where she read it at , but, she said so for it was working for her and I am very proud for her.
Donna Mills said:
My GP wanted me to go back on meds to see if it would help, but I can't stand the thoughts of going back on it, so I'm going to try to deal with it until I can't. I'm hoping it will get better with no meds.
Like you I am in a much better place than a year ago or even 6 months ago, although I would like to be pain free...:)
Some days are worse for me than others, if I get nervous or stressed I have more stings and tingles and pain.
I'm wondering why the low calorie diet helps?? Worth a try, I need to lose some weight anyway.
Thanks for the information.
Take care
Have you tried prescription Lidocaine patches or lidocaine cream?
I'm pre-MVD and hate my meds -- lowered doses - I can think more clearly and I can use patches or cream for breakthru
pain
hang in there
kimberly in kc
An update on my TN twinges, started back on tegretol yesterday with the hope that it gets no worse. Not looking forward to that spaced out feeling. Will be 2 years in jan since my MVD. Tracey
Hi Tracey,
I am so sorry to hear this. I hate that spaced out feeling as well. I had MVD in April of 2011 and I having twinges and pain and so scared I am going to have to go back on meds. I talked with the nurse at my surgeon's office and she said to wait a couple weeks since the twinges got worse as the feeling was coming back in my head, she said it could just be an adjustment, but the pain seems to be getting worse. I'm so aggravated and depressed at this point because I do not want to go backward.
Just thought I'd share my experience with you and let you know you are not alone. It's so hard for people to understand this horrible disorder since you can't see anything. However my family and friends say they can see the pain in my eyes.
Take care and keep me updated.
Donna
Hi, Tracey
I had MVD surgery in Aug. of 2010. I have never been completely off of the tegretol. I do think that you and Donna are so brave because I have never been able to come completely off of the medication. One is because my Neurosurgeon told me to stay on the medication for at least 6 months to a year and the other is because of having the "twinges" and "niggles" above my lip and beside of my nose. I was however, completely pain free for about 5 months then I started having these feelings. I have had numbness at the end of my tongue mostly since surgery. Fortunately, I had dropped down to taking only 100mg of tegretol a day and 5 months following my surgery I had decided to stop the medication when these feelings started. I called my Neurosurgeons and spoke with his nurse and she told me to stay on tegretol and take Aleve, 2 in the morning and 2 at night for 2 weeks. This she said was for inflammation, and it did seem to help. It has been 14 months since my surgery and I am having to do this again. I couldn't sleep last night for the "niggles" and my tongue was so numb it felt as if it was burning. Also , the "twinges" are happening more often and to me it is a feeling of I want to shock , but so for hasn't. I to am so afraid my TN is coming back. I am also experiencing a burning feeling on the other side of my lip, I know it is TN to, but, I am hoping it will not become the hard electrical shock type.
I am wondering if inflammation, or due to tension in the neck, could be causing these twinges and if the Aleve helps could this be something that we might have to consider doing from time-to-time to keep the twinges at bay.
Linda
Hi Linda and thank you for your reply.
As I was reading your letter, it sounded so familiar. I have the twinges and niggles and small shocks and get so scared that it's coming back. I've been taking ibuprofen, tylenol and Aleve. I rotate and can't seem to tell that one does much different than the other, except that they don't seem to be as effective as before. I get so tired of taking something all the time. I guess I shouldn't be thinking so negative but I almost know that I will have to go back on the tegretol and I dread it so much. I have not had any numbness except in my head and that is starting to have some feeling in it recently. I too have had some burning. It's just so frustrating to go through the pain then surgery, recovery and still have to deal with it. I know it could be worse and I keep reminding myself of that.
Take care and have a great day.
Donna
Donna, you're taking three different over the counter meds that are known individually to cause stomach and gastric upset at higher doses. I would advise that you consult your physician concerning how much of these drugs you can take safely in combination. For whatever this is worth, for most people most of the time, this class of anti-inflammatory drugs is usually not effective against facial neuropathic pain. In a few cases I've heard of over the years, anti-inflammatories do seem to promote the effectiveness of other meds such as the anti-seizure meds, just as cortisone shots have also helped a few face pain patients. It's presently unclear to medical researchers why either class are useful in this disorder or exactly what they do.
Obviously it's worth trying anything that isn't actively harmful. High doses of anti-inflammatory drugs unfortunately can cause both ulcers and liver compromise. So go with care. That way be dragons.
Regards and best,
Red
Thanks, Donna for your reply. I think you are so brave to have these feelings and to have not started back taking tegretol. I am so afraid of the pain. I have never come completely off of the medication because I am so afraid at some point the ''twinges" or small shocks will turn into major ones. These feelings "twinges, niggles", are also coming more often for me. It is, so.....frustrating! And I to, know that it could be worst and that I should be thankful to God everyday for being able to get by as well as I do.
Take Care, Linda
Donna Mills said:
Hi Linda and thank you for your reply.
As I was reading your letter, it sounded so familiar. I have the twinges and niggles and small shocks and get so scared that it's coming back. I've been taking ibuprofen, tylenol and Aleve. I rotate and can't seem to tell that one does much different than the other, except that they don't seem to be as effective as before. I get so tired of taking something all the time. I guess I shouldn't be thinking so negative but I almost know that I will have to go back on the tegretol and I dread it so much. I have not had any numbness except in my head and that is starting to have some feeling in it recently. I too have had some burning. It's just so frustrating to go through the pain then surgery, recovery and still have to deal with it. I know it could be worse and I keep reminding myself of that.
Take care and have a great day.
Donna
Linda and Donna, there is a sort of persona Mantra that I've always found helpful when dealing with fear. It is something you say to yourself repeatedly in the silences of your own mind. The following is expanded from something Frank Herbert wrote in one of the "Dune" series of science fiction novels:
I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me,
to disappear into its native nothingness.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain.
The idea here is that fear doesn't come from outside yourself and is not beyond your ability to control or set aside. We can change what we feel emotionally, in any of a hundred ways. Rational Cognitive Therapy tools are one avenue of approach. For some people, prayer is another. The Yogas offer centering exercises for mindfulness that are powerfully effective for millions of people around the world in bringing relaxation and freedom from fear.
I note these effects, because fear is fundamentally not good for anybody, and perhaps more so for pain patients. It is a stressor that you manufacture with no external help. And stress is a facilitator for pain. If you wish to create a greater possibility of freedom from pain, then face the fear and relinquish it. You can, you know.
Go in Peace and Power
Red