Hi, im new to this website, completely alone in dealing with this,have never spoken to anyone else with this condition and have a millon questions.
One of them is, could my back right tooth, that has half crumbled away be causing attacks to start or worsen? My attacks are also made worse if i put any pressure on the tooth even touching it with my tounge. And also, when they start, they start at that tooth. I have no other trigger points other than this? Although during an attack I obviously cant stand the cold.
A second question is about something thats really scaring me, my neurosurgeon wants me to have MVD. I'm terrified that its going to kill me or that ill have bad things happen, or worse....it wont work. He has told me that i have 90% pain free chance for ten years....what about after??? do they re do the surgery or give me something else? Ill only be 31...what do they do then?? Please help, i know the pain can be controlled for now but im worried about the distant future.
Ok worried isnt the right word, terrified and feeling like there is no hope.
A lower crumbled back tooth would not be causing upper facial pain. an upper one could cause everything you describe especially if there is infection. is this a wisdom tooth?
Mica, the Dentist I just saw last week told me just the opposite. He said if a lower crumbled tooth is in bad enough shape than it most certainly could cause upper facial pain, it just depends totally on how bad said tooth is. I had two extractions done last week when all my pain was on the left upper jaw, area of the tooth that came out and now all my pain is upper right jaw where that tooth came out, you know, like phantom tooth pain.
I would be scared of MVD at your age too, heck, I am 46 and would still be scared of it. I am also atypical like you so it's strange to hear a Neurosurgeon give you 90% pain free chance, as they do not usually give those good of chances for us atypicals. I am also seeing a Neurosurgeon, was supposed to be Aug 25th, but I had to switch it to Sept 8th because I couldn't afford the gas, as it's 2 plus hours away. But if he offers me MVD I will be jumping at the chance because even though it's a scary surgery at any age I think living with this pain is even scarier! Good luck and keep us posted. Love Ali
I had MVD surgery a year ago this Aug. 30th. I am 54 years old. I would not hesitate to have the surgery again. I was in so much TN pain and was having to take 1200mg of tegretol, Lyrica and I had to make sure this was taken every 6 hours are "horrible" TN shocks would happen. The surgery was not at all as bad as I thought it would be. I was up and going the next week, in the hospital 2 1/2 days. Some headaches, that were controlled with extra strength Tylenol. I still take a very small amount of medication (100mg)for the little "twinges" I get from time to time, and have numbness from time-to-time but I have had none of the horrible shocks "attacks" that I did have. It takes a while to fully recover, as for as the healing process goes, but, it is so worth it.
I will add , my sister thought she had TN for two years. She hurt more in her gums, and her Dentist could not find anything wrong, some of her teeth began to crumble also. She took tegretol for 2 years and finally she had to see another Dentist and he found where she had and abcess tooth and had , had it for quite sometime. He pulled the abscess tooth and treated two others and she has been TN free ever since. For me, my TN pain was in the face, the skin, she kept saying no it was in her gums. Not sure if this helps but good luck to you.
If you have a tooth crumbling, then it seem to be time for an extraction. Regardless of whether you have TN pain or not.
As for statistics on MVD: Reports published since 1995 suggest an initial success rate of 90-95% in patients with Type I (Typical) TN, with persistence of good outcomes beyond 15 years for about 70% of Type I patients. Type II (Atypical) TN patients don't do quite so well in most of the literature reports, though patients whose pain began as Type I and evolved into Type II seem to do about as well. In both cases, re-operation to correct for pain recurrence is almost always an option.
Among all MVD patients, about 10-15% have some type of initial undesireable side effects. The most common are persistent facial numbness and temporary CNS fluid leaks. Much less common are loss of tearing reflex in the eye, compromise of hearing, or Anesthesia Delorousa, a painful condition of parasthesia combined with numbness and underlying burning pain.
There is reason for anyone to be prudently aware of the risks with MVD. But there is no good reason for terror, and specifically none for terror over the non-existent possibility of dying during the procedure. In a series of over 1200 MVDs performed by Peter Janetta and his team at Alleghenie General Hospital and reported in New England Journal of Medicine, I believe there was only one case of stroke fatality noted -- and that case was assessed as unrelated to the MVD procedure itself.
Feel free to come back with questions. And likewise, take a look through the material in our "Face Pain Info" tab, on the menu above. Another worthwhile book is "Striking Back, the Trigeminal Neuralgia Handbook", available through Amazon.
I found your post REALLY helpful. I'm on 1200mg of gabapentine a day and HAVE to take them every six hours also or i start getting more pain. Youve made me feel a little more optimistic about the surgery.
In regards to the tooth. Its interesting because mine is both in my gum and then, once the attacks really kick off it goes all over my face into my sinus, the back of my throat my cheek my forhead ect!
Linda Kindle said:
Hi, Mica
I had MVD surgery a year ago this Aug. 30th. I am 54 years old. I would not hesitate to have the surgery again. I was in so much TN pain and was having to take 1200mg of tegretol, Lyrica and I had to make sure this was taken every 6 hours are "horrible" TN shocks would happen. The surgery was not at all as bad as I thought it would be. I was up and going the next week, in the hospital 2 1/2 days. Some headaches, that were controlled with extra strength Tylenol. I still take a very small amount of medication (100mg)for the little "twinges" I get from time to time, and have numbness from time-to-time but I have had none of the horrible shocks "attacks" that I did have. It takes a while to fully recover, as for as the healing process goes, but, it is so worth it.
I will add , my sister thought she had TN for two years. She hurt more in her gums, and her Dentist could not find anything wrong, some of her teeth began to crumble also. She took tegretol for 2 years and finally she had to see another Dentist and he found where she had and abcess tooth and had , had it for quite sometime. He pulled the abscess tooth and treated two others and she has been TN free ever since. For me, my TN pain was in the face, the skin, she kept saying no it was in her gums. Not sure if this helps but good luck to you.
Glad I could help out! I do know there are issues with every surgery, especially, thinking of brain surgery. My neurologist kept saying , NO, but I just got so tired of living with the pain , the fear and feeling so bad from the medication I just decided I had to take the chance. My surgeon was very positive, he looked at my MRI and said that the best way to fix my problem was with MVD and explained that he just went under the brain an put the packing between the blood vessel and nerve and he did not go into the brain.
I joined a support group called "Daily Strength" and they were very helpful with info and very encouraging. I think it has been for me , one of the best decisions I have ever made, even if it doesn't last but a few years, and maybe I have to take a small amount of medication, I am not where I was this time last year. Linda
Mica said:
Hiya Linda,
I found your post REALLY helpful. I'm on 1200mg of gabapentine a day and HAVE to take them every six hours also or i start getting more pain. Youve made me feel a little more optimistic about the surgery.
In regards to the tooth. Its interesting because mine is both in my gum and then, once the attacks really kick off it goes all over my face into my sinus, the back of my throat my cheek my forhead ect!
Linda Kindle said:
Hi, Mica
I had MVD surgery a year ago this Aug. 30th. I am 54 years old. I would not hesitate to have the surgery again. I was in so much TN pain and was having to take 1200mg of tegretol, Lyrica and I had to make sure this was taken every 6 hours are "horrible" TN shocks would happen. The surgery was not at all as bad as I thought it would be. I was up and going the next week, in the hospital 2 1/2 days. Some headaches, that were controlled with extra strength Tylenol. I still take a very small amount of medication (100mg)for the little "twinges" I get from time to time, and have numbness from time-to-time but I have had none of the horrible shocks "attacks" that I did have. It takes a while to fully recover, as for as the healing process goes, but, it is so worth it.
I will add , my sister thought she had TN for two years. She hurt more in her gums, and her Dentist could not find anything wrong, some of her teeth began to crumble also. She took tegretol for 2 years and finally she had to see another Dentist and he found where she had and abcess tooth and had , had it for quite sometime. He pulled the abscess tooth and treated two others and she has been TN free ever since. For me, my TN pain was in the face, the skin, she kept saying no it was in her gums. Not sure if this helps but good luck to you.
Again Linda thank you, my fiancee has noticed a change in my attitude and the replies to this post, especially yours are helping me to accept my condition and what comes with it. I feel a lot more hopeful and optimistic right now. Gotta say this website is the best thing I’ve ever found!
Linda Kindle said:
I Mica,
Glad I could help out! I do know there are issues with every surgery, especially, thinking of brain surgery. My neurologist kept saying , NO, but I just got so tired of living with the pain , the fear and feeling so bad from the medication I just decided I had to take the chance. My surgeon was very positive, he looked at my MRI and said that the best way to fix my problem was with MVD and explained that he just went under the brain an put the packing between the blood vessel and nerve and he did not go into the brain.
I joined a support group called “Daily Strength” and they were very helpful with info and very encouraging. I think it has been for me , one of the best decisions I have ever made, even if it doesn’t last but a few years, and maybe I have to take a small amount of medication, I am not where I was this time last year. Linda Mica said:
Hiya Linda,
I found your post REALLY helpful. I’m on 1200mg of gabapentine a day and HAVE to take them every six hours also or i start getting more pain. Youve made me feel a little more optimistic about the surgery.
In regards to the tooth. Its interesting because mine is both in my gum and then, once the attacks really kick off it goes all over my face into my sinus, the back of my throat my cheek my forhead ect!
Linda Kindle said:
Hi, Mica
I had MVD surgery a year ago this Aug. 30th. I am 54 years old. I would not hesitate to have the surgery again. I was in so much TN pain and was having to take 1200mg of tegretol, Lyrica and I had to make sure this was taken every 6 hours are “horrible” TN shocks would happen. The surgery was not at all as bad as I thought it would be. I was up and going the next week, in the hospital 2 1/2 days. Some headaches, that were controlled with extra strength Tylenol. I still take a very small amount of medication (100mg)for the little “twinges” I get from time to time, and have numbness from time-to-time but I have had none of the horrible shocks “attacks” that I did have. It takes a while to fully recover, as for as the healing process goes, but, it is so worth it.
I will add , my sister thought she had TN for two years. She hurt more in her gums, and her Dentist could not find anything wrong, some of her teeth began to crumble also. She took tegretol for 2 years and finally she had to see another Dentist and he found where she had and abcess tooth and had , had it for quite sometime. He pulled the abscess tooth and treated two others and she has been TN free ever since. For me, my TN pain was in the face, the skin, she kept saying no it was in her gums. Not sure if this helps but good luck to you.
thanks! Funny you should mention having a baby, the main driving force behind a decision to have the op for me is to be able to have a baby without worrying about medication. The last part pc your message was really inspiring. Thank you for such great advice. I have until November to decide wether or not I want the surgery. To he honest I’ve pretty much accepted that its inevitable so I think ill use the next few months to accept it and prepare myself. I’m just scared of the risks as I’m sure everyone is!
Jackie said:
Mica Have you thought about joining the Sub-Group - MVD, for people who have had or considering the op. I know there is much great info there and on the face pain info tab to help you make a choice about surgery. I know I should give it some serious thought if I were such a young woman. There is also your future. You have said you are to marry soon, maybe soon you will want a baby and then you have to take into account drugs and pregnancy. Then again if you get good results with medication maybe you will not bother.
When I am having really bad pain I have one tooth too which kills when anything touches it. I cannot brush or floss. I have to drink with a straw and only slurp soft food. I feel sorry for you as I know just what it feels like.
Please don’t feel terrified sweetheart, I hate to think of such a young woman as you being that way. You still have so many wonderful things to happen to you in life.When you have more knowledge and experience TN wil take it’s rightful place as a part of your life and NOT your whole life.
Hi there! I joined the MVD group on here, and read the book Striking Back - AND watched the 2 hour video of Dr. Casey explaining so much about the mysteries of TN.
I just started a journal on here because I am doing MVD late Oct.
Make sure your surgeon has done these often / many
To of dancer, I think I will invest in that book! Thank you! And to jackie, your right no one in this country knows much about nueralgia! I’ve yet to speak to a dentist yet as I’ve only just registered with one but years ago when I went to an emergency dentist about the pain in my face (i didnt know I had nueralgia then) he gave me an x ray which came up clear and kept injecting my gums to see if the pain would stop. In the end I’d had 10 injections in my gums on my right side before he declared he had no idea what was wrong. He was rude too and told me to make my mind up cus as we all know the pain moves from top to bottom. Anyhow I’ve decided to have the surgery pretty much as I don’t wanna be on these tablets all my life.
I’m going to keep reading about peoples experiences and check out the face pain info you’ve told me about! Although at the moment I’m all over the place as my wedding is next week and I start a new job only one day after that! I refuse to let nueralgia ruin either of these happy events! I hope everyone is well? Xxx
I know! Useless eh!? He was incredibly rude and well known where I come from for being miserable. I’m looking forward to seeing a new dentist and discussing my condition with him.
My pain started when an endodontist worked on my back left molar. He did an injection error and may have even gone too far into the canal to hit the nerve underneath. It is believed that he caused a traumatic nerve injury that has now resulted in constant pain in my face. ( I wish I could go back and not have gone to him. Perhaps I would have never come to this world of facial pain. I know -- never look back.) So, what you are saying makes perfect sense to me.
Another neurologist is telling me that I have TN and if I do then I too am wondering about MVD. It scares me too because I fear I'm going to wake up with pain in both sides of my face or double vision. In general, worse. The meds aren't helping that much but I did get an injection and after 10 days of hell pain then I had relief for several months. Still with that I worry about injecting steroids and the effect it is having on my bones.
I feel there is hope because others have bcome pain free. If they can be pain free then I can be too.
hi this is an update on my progress after having the mvd aug 2009. I had the surgery for the 3r 5 th and 7th nerve atypical problem. i was using the medications but at the high doses i had to take toget them to work they gave me bad reactions so i had to stop taking them. when i decided to get the surgery i was also scared at the thought of having my skull opened and someone moving things around in there. the joke was that now i really will have a hole in my head to ease the tension at the time. the surgery went as well as it could have. the dr told me that my nerves and arteries were a mess. they were all tangled up and twisted where they shouldnt have been. he did his best at making things straight and put the teflon in to seperate the two. i recovered quickly and was going home in 3 days. i was pretty much back to normal except for some headaches and soreness at the site from the staples.
now the downfall. i was left with numbess on half my face. when i eat i still at times bite my cheek or tongue which has no feeling. i get a burning sensations on my cheeck bone up to my eye. my eye has to be checked every 6 mths and i use restasis eye drops daily due to dry eye. at times my eye gets pain in it and i still get headaches. but the pain is gone the sharp very painful electric shocks. the fans or wind and my blowdryer heat still bother me but in a different way.but again that pain like no other that no one can understand but us with the pain can is gone. the pain that takes you to tears is gone and replaced with a burning numbing 24 7 feeling i can handle.
someone at my husbands work the other day said his mom in law was just diagnosed with tm. he asked who my dr was and if i would do the surgery again was it worth it. the answer is yes i would because what i have now is 24 7 but is no where as painful as what i had and this is one of those things that happens to 1 in a 1000 and i won the lottery i was that one but i was lucky cause im still here to talk about it and maybe someday they may have a surgery to take away the numbness but then again maybe i would be feeling pain so for now i will be thankful and live my life the way i am pain free and numb. good luck to everyone who is deciding to do the surgery. go for it life is to short to live in terrible pain.
Thank you for that update, and sorry for the late reply, i got married last month then started a new job a day later so ive been really distracted. Since i Last wrote on here my neuralgia has kicked off again (like now for instance) and im certain that im going to get the surgery, I cant bare this pain any longer and would rather be numb too!!! Ill be seeing my surgeon soon so ill let everyone know what he says.
I had the MVD done in February 2010. I was pain free until Feb 2011. It came back in full force. So they tried the Radiation procedure on me in May 2011. That lasted 3 months. When I saw my neurosurgeon a month ago, he has told me that he does not feel confident that any procedure would work for me. Very disappointing. But yes, my neurosurgeon told me 90% too....Guess I was part of the 10% Good luck to you and really think long and hard on the surgery. I was petrified also. to the point of panic attacks so they gave me an anxiety med to calm me down. I will say that the year of being pain free was wonderful.......
You are not alone....I got chills reading your posts and the replies of others. We have all been in your shoes and still are. Scared, worried, confused, medicated and not sure where to go. This site saved my life. I stubbled into the right spot and was supported by everyone here.
I just turned forty and have 3 little kids. I couldn't handle anymore meds and the pain just kept increasing...
I sourced out the best TN Neurosurgeon in Canada, travel out of my province and had the MVD. That was 41/2 half months ago. It was the best thing I ever did. I gained my life back. For me "brain surgery" was a breeze compared to living with the pain and meds of TN . I would encourage everyone to take a chance if you are at your wits end...but....make sure you have the best doctor.
I wish you luck and peace in your search for answers.