First I wanted to know why you were diagnosed with TMJ to begin with and this is very important. Was that done by a dentist? most likely because dentist treat TMJ. I have suffered from TN caused by a dental implant procedure and the inexperienced dentist suggested TMJ aloing with VDO and myofecial and muscle spasm and anything else you can imagine. I did lots of study in this area and did my own diagnosis and I was right. Removing the implants stopped my TN symptoms, the dentist did not know what he was talking about, I filed a lawsuit against him. If you have TN then it is mostly on one side of the face, usually the right and it affects the entire side of your head. If you do have an abnormal blood vessel, this means that maybe this vessel compresses one of the Trigeminal brunches (there are 3) and we have one on each side of the head. Before you say to the doctor which side of your head is in pain ask him where this "bad" blood vessel is, if it is not on the side that you feel the pain then the problem is not the vessel. I have gone thru 4 years with the worse pain of my life and feel your pain.
Just for the record, I never considered doctor suggestion for surgery for the simple reason that most doctors are shooting in the dark.
I was told a similar diagnosis as Shelly Michell that the MRI would rule out MS. My neurosurgeon told me an MRI is usually not helpful in seeing the cause of the TN, I don't know if that has anything to do with my age. All my reading and research tells me after the age of forty you will probably never know what caused the TN. The biggest thing I've found out is TN is like a snowflake and no two cases are alike and what works for somebody else will never work for me!!!!!
It's a winding road and may require a lot of experimentation with meds, I'm lucky my Dr. works with me in that area, I hope all of yours will as well.
I diagnosed myself after having what I thought was the worse toothache ever! (I was told after that that toothaches don't come and go, they just stick around until something is done - useful info). It waxed and waned over the years, sometimes dreadful and sometimes not quite so much. As time went on, it was just dreadful. I did have an MRI, which showed a very small abnormality. After researching the potential treatments, I opted for MVD, mostly because of the threat of numbness. Luckily, I got an extremely experienced neurosurgeon, and the deed was done three years ago. The TN disappeared until about six months ago. It has come back, sometimes with a vengeance, but also intermittently, and I'm able to control it with Tegretol. I do a lot of public speaking, so I try to keep the meds in check, as they cause me to feel a bit intoxicated and fuzzy. I would do the surgery again if I had to (but I really hope I don't). What's interesting about my case, I think, is that severe neuralgia seems to run in my family. Six out of the 12 members of my immediate family have some sort (mine was the worst, and I hope it stays that way).
That's not unusual wording "abnormal blood vessel" when diagnosing TN It generally means that the offending blood vessel is irritating the trigeminal nerve. It sounds to me that you may be soon be presented with the option of a Micro Vascular Decompression or MVD. It may sound scary, but based on my own experience it could be the best and most successful option. I was delighted to end the pain and get off the various meds that had been tried and to which I had allergic reactions (one that almost killed me) for a period of 10 years prior to my MVD. Do the research. I suggest you purchase the book "Striking Back! The Trigeminal neuralgia and Face Pain Handbook" available from The Facial Pain Association at http://fpa-support.org There is much information on the site including other books as well. For me "Striking Back" has been my bible for exceptional information about the condition and other related conditions and about traditional and non traditional approaches to treatments.
Good luck and breath ...." abnormal vessel" is often a good clue to the source of facial pain.
Yes my mother had an MRI and the Cyberknife surgeon, (different from Gamma Knife, no head brace or puncture wounds) told her it was probably that blood vessel that was putting pressure the nerve. They did the radiation and she felt nothing initially while still on her meds, then after 3 weeks the nerve reacted like crazy, she suffered terribly for three weks before it subsided. She is now taking 1Trileptal a day down from 7 a day, (which were making her a zombie) and is down to a "knawing" tooth pain. She is afraid to repeat the procedure for fear of waking up the nerve again. But if the pain slowly increases, that will need to be reassessed. The procedure was effective, it just did not eliminate the pain. Hope this helps...
I wanted to share my story to give you hope and encouragement. I am a retired chiropractor that 8 years ago first felt the beginning stages of my run with TN. It start in the ophthalmic branch affecting my right eyeball. Over a period of a few months I began to experience maxillary branch involvement affecting my upper right cheek, nose, lip, and teeth. The attacks were relatively minimal and infrequent to begin and I had periods of 4-5 months of remissions. Over a 6 year period the remissions became less and less, the symptoms increased to nearly constant, and of course I could not go on with my life as it was becoming. With my background in natural medicine I knew from the start what it likely was and tried treating it with various forms of remedies, including purchasing the best cold laser I could affordably purchase and various other herb/vitamin combinations and physical medicine including acupuncture and manipulation). As my symptoms spiraled out of control I finally gave in and had an enchanced mri showing clearly an intrapment of the trigeminal nerve by the internal carotid artery. Basically the fat padding protecting the nerve had moved away or receded from the artery pulsating over a period of years directly on this area (it was slightly malformed). This was enough to wear away the myelin sheathing that surrounds the nerve and cause the irritation and inflammation of the nerve so that any tactil stimulation from that side of my face like brushing teeth, touching face or eye, or even the virbration of talking would be perceived by the nerve as a noxious stimulation and set the symptoms off similar to a jolt like electrical feeling in those areas.
I contacted a neurosurgeon who has had a great track record with neuro vascular conditions as well as TN. His name is Michael Alexander and he is at Cedar Sinai in West Los Angeles. I was of course very concerned and scared after reading a lot of stories of patients worsening, but I knew in my heart that this was my best option. I had the surgery 2 years ago and I have been pain free since the day I left the hospital. Basically he entered the area from the back of my ear removing a small circular piece of occipital bone and with a small scope got to the site where the trigeminal nerve and internal cerebellar artery were and place a Teflon padding there to prevent the vessel from contacting the nerve. I would not hesitate to have this surgery again. The recovery was not remarkably hard and within a couple of weeks I felt very stable and basically back to normal.
I would recommend this to anyone who has mri evidence that the trigeminal nerve is contacting a blood vessel. You can meditate, have acupuncture, take every vitamin/herbal combination, or use other therapies, but until that contact is prevented from happening you will not get better and likely over time it will just worsen. I know there can be complications and in rare instances it can worsen following surgery but that is a risk I was ready to take and I felt that the surgeon I selected had the skills and confidence that he could and would be able to relieve at the very minimum 85% of the symptoms related. He surpassed that with a 100% perfect outcome!
Investigate the findings of the mri with your neuro surgeon and if is confident that you have typical TN caused from compression of the nerve find a surgeon that has a successful track record! Keep me posted and I will pray that your steps will be guided to that right person to be able to give your life back to you.
Dokie, I attended the National Facial Pain Association Conference that was held in New York just over a week ago. Some of the top neurosurgeons spoke there. The new advice from neurosurgeons is to undergo surgery sooner, rather than later. TN get progressively worse over time; the greater the progression, the more difficult the surgical correction. Do look for a neurosurgeon who has a track record of success. If you have to travel, do it.
Definitely read Striking Back. Get informed about the different surgical options for TN and find a neurosurgeon who is willing to discuss alternatives in depth.
You've gotten excellent advice in all these posts. Study up, get informed, find a neurosurgeon with an astoundingly good track record. Mark Linskey is in California, I believe Dr. Casey is in Pittsburgh, and Jeffrey Brown is in New York. They are the shining stars of neurosurgeons who specialize in TN care.
I have suffered TN for a few years on and off the pain got so bad I did not want to live anymore ,after visiting the doctor everyday and seeing a Neuro Doc I finally had a MRI scan cutting a long story short they put me on tablets 100 gm every day to slowly increase to 300 a day I was like a Zombie I couldnt work and my TN got worse every day ,
I thought this is not a life if im like this on 100 whats it going to be like on 300 and i want to work as my financial side was not good being on sick for 6 months
One day after taking my meds and having an attack i decided i did not want a life like this
My sister and i started to see a pattern with my TN it was certain words which caused me stress and vibration stress being the main factor so i decided a life with no stress would stop the attacks
So i started meditating every day without fail avoiding anything that would normally cause me stress ,i covered up my face when i went out (tied my hair back ) as one hair blown on my face triggered attacks
Stopped all medication and started leading a peaceful life if anyone wanted to argue i would walk away i started speaking
in a Quiet manner .Acupuncture as a alternative medicine and hay 6 months later im completely TN FREE my life is back to normal :) i still keep up my meditation and keep stress out of my life im not saying this would suit everyone as TN can vary but i had strong faith i could cure myself and my belief was so strong as i wanted to have my normal life back and kiss my husband which has been impossible .I was only able to do this with the help of my family as it is a very difficult disease to live with .As for you please dont stress over your MRI as this will without you realising make your tn worse ,start keeping a diary of what triggers attacks and times fod etc as this helped me GOOD LUCK
Hello Eli Girl,I have just somehow lost my reply to you…here goes again! I was I inspired by your story as this is the way I have decided to go.I have just come off yet another medication where the side effects were too much and now I am coming off my two other meds.I too see a pattern of stress equalling pain…Now I meditate and do breathing exercises,eat healthily and walk.I have faith in healing myself with help from my husband.I know it will not be easy especially as I say yes too often !Did your acupuncturist treat you for stress? I have just started working with a homeopathist.So thank you for that posting as it really has given me hope that I will get there.Namaste.
Hi Dokie, I had the Fiesta MRI right off the bat luckily and they saw a compression which led to an MVD after I had a glycerine Rhizotomy. I was never told when I went to the original neurosurgeon that I had any issues with blood vessels, but when I went to the surgeon, Dr, Brown that did the MVD ( the first surgeon refused because I had "atypical" TN) he remembered that I said I had horrible migraines on my initial paperwork and found a blood vessel on my cartoid ( spelling?) artery that he said was causing my blood not to be flowing to my brain , therefore causing the migraines. Dr. Brown never mentioned the two were related, only that he could not believe I could function at all when I had a migraine, let alone TN because the artery was so strangled.
As a side note, I had the MVD in 2013 and he removed the artery and I have had zero migraines since and the TN pain is only about 5% of the original amount of "kill me now". I have a bit of orbital pain right now from my allergies and an occasional slight lightning strike, but its an annoyance more than anything and will subside one it gets really cold out and my allergies get better.
It;s funny, by the time I got the MRI, I was the opposite of you, I was hoping they would find something so I could have the surgery!! I just wanted the pain to end, and surgery doesn't really scare me, so I guess I am weird that way, among other ways, lol.
Hope this helps, but the main thing you need is a true diagnosis, and treatment plan, and if you can have surgery, I highly recommend it!! It really wasn't bad at all!!
Looking back now, I was misdiagnosed by my primary doctor and dentist with TMJ for some seven years. I never had lightening shocks like classic TN, just the boring pain. But my pain developed the lightening shocks. At that point, the pain drove me to the hospital where a bright ER doctor who did a residency in neuro knew exactly what it was and referred me to OHSU.
I actually think there are more of us out there misdiagnosed then we all realize. I have horrible teeth anyway and have grinded them for years so there were stress fractures in my back molars which is why initially they said TN. And the mouth splint actually helped the pain --- I think it helped not trigger something.
Hang in there and please consider yourself blessed. They saw an abnormalty which means that you may have an option for healing. They can't see one in mine although I have some nerve bundles around my teeth that I guess are "extra" they are not near the trigeminal nerve. You have hope. Rock on!
First I wanted to know why you were diagnosed with TMJ to begin with and this is very important. Was that done by a dentist? most likely because dentist treat TMJ. I have suffered from TN caused by a dental implant procedure and the inexperienced dentist suggested TMJ aloing with VDO and myofecial and muscle spasm and anything else you can imagine. I did lots of study in this area and did my own diagnosis and I was right. Removing the implants stopped my TN symptoms, the dentist did not know what he was talking about, I filed a lawsuit against him. If you have TN then it is mostly on one side of the face, usually the right and it affects the entire side of your head. If you do have an abnormal blood vessel, this means that maybe this vessel compresses one of the Trigeminal brunches (there are 3) and we have one on each side of the head. Before you say to the doctor which side of your head is in pain ask him where this "bad" blood vessel is, if it is not on the side that you feel the pain then the problem is not the vessel. I have gone thru 4 years with the worse pain of my life and feel your pain. If you like to contact me for more info please email kyrnick@yahoo.com.
Just for the record, I never considered doctor suggestion for surgery for the simple reason that most doctors are shooting in the dark.
The neurosurgeon I was referred to said the same thing, that I had abnormal blood vessels. Before I scheduled for the MRI he stated that's a good (yes he said it) sign of TN and that for some people that's how it's really diagnosed and for some people you can't see it on an MRI. My MRI he looked at it and went wow, I can see why you have so much pain. I am 6 weeks out of surgery and not to scare you but I have never regretted a surgery so much than this one. But this is my experience with it and it may help for you. He told me just a few stitches on the side of my head and it wouldn't be that bad, oh and that I would feel instant pain relief. The liar. I woke up to 18 staples and almost half my head shaved. I have extremely long hair, almost down to my butt so it's noticeable. I have worse pain now than before. Before I had breaks between the episodes and now it's constant. I was scared I wouldn't make it in life with the pain and now I fear that the pain will cause me succumb to the deadly statistics. I couldn't take it before and that's why I begged for the surgery and now that it's worse I am really scared. I think my surgeon was a complete idiot tho. He sold me on the miracle surgery and in the hospital he was a completely different person. We had two major arguments. He took me off my original pain meds, I also have major back problems too, and gave me Vicodin. I've been on oxy and methadone for over 4 years. And when I told him I still had bad pain he told me I was lying and that I was better. So hopefully ur surgeon is better and explains things a lot better to you. Please remember every persons results are different, what works for one doesn't work for someone else. Hopefully things go better with you. Good luck
I hope your visit with the neurosurgeon this Thursday goes smoothly for you! I had an MRI years ago where the radiologist said that it looked like there was a blood vessel pressing on the nerve so based on my history and the outcome of that MRI, I was diagnosed with TN. The biggest question I have though--if a blood vessel is really pressing on the nerve, how come I don't have daily pain and have gone into remission for long stretches of time?
So far I have found that supplementing with Methyl B-12 1000 mcg 2 tabs per day (chewable) has kept my TN at bay quite well. Recently though, it kind of "woke up" (just a couple of stabs so far) and I think it was due to additional stress, so I am working on getting that stress back down. Called the neurologist to ask what I can do for breakthrough pain and she has prescribed Lyrica. I'm waiting to see if it goes back into remission again before I start the med.
This site is loaded with suggestions, from medications to surgery and everything in between. The biggest help? Knowing that others understand what you're going through and can relate. I'm certain you will find the right path for you and don't ever give up searching.
Best wishes and just know that a lot of people will be rooting for you from the sidelines!
I am assuming your MRI was fairly standard for TN, as in it is in 2D. I hear so many people state on MRI Neuros say it shows a compression. They may well see a vessel but it does not mean it is compressing anything. Plenty of folk given an MRI without symptoms of TN would show a vascular component in the vicinity. Take a picture of me in front of the White House doesn't mean I am interacting in any way with the White House. I would ask what he means by an abnormal vessel.. Abnormal in the sense it can possibly be demonstrated in any number of non TN patients? I realise I am not being overly helpful but an MRI 2D means nothing. As in please don't stress but ask questions.
Hi Dokie, Wow, what can i say! This TN is something else. I have suffered from it for years, never had any surgery of any kind. To be honest i am simply afraid to have any type of surgery concerning this TN. I am on Tegratol 200 mg twice a day, Neurotin 400 mg 4 times a day, oxy pain pills as needed at least 2 times per day, and zanaflex 4mg 2times per day. The doctor has me under pain management right now. Long story short Dokie, I am a believer of Jesus Christ and i dont believe there is nothing too hard for him to do. I have been to the ER so much they almost know me when I come through the door. They give me morphine and try to get my pain under control. I have not had any pain attack since Oct5th so far.....thank you Jesus. I am believing i am healed. If God dont heal me its not because he cant!! I will keep trusting and believing until he does. Like everyone else say TN is different for everybody, and everybody get what ever treatment they believe in. My treatment is JESUS CHRIST!! I will take my meds and keep believing. God is a rewarder to those that deligently seek him. I will be praying for all of us concerning this TN. You be blessed my friend and keep the faith, let God lead you as to what to do. We are always here for you!! I am so grateful for this web site. Be blessed!
I had a normal MRI but then had an abnormal MRA. The Dr’s thought I might have an aneurysm so they did a cerebral angiography & fortunately didn’t find any problems. I have had TN for about 5 years, have had Gamma Knife & MVD. Neither worked for me even though they did place a Teflon pad between a vessel & the nerve just as it comes out of the brain stem. I used a Dr that has done the surgery many times & been quite successful. So I continue to take drugs & I do acupuncture which has helped me some. I only take 2 drugs now instead of 3.
I don’t know this is absolutely correct. I had a 4D mri flow scan. They put an iv in and contrast dye is injected. It is incredibly accurate in noting compressions. I think it is helpful to know what procedure you had and what the strengths and weaknesses of it is.
aiculsamoth said:
Dokie,
I am assuming your MRI was fairly standard for TN, as in it is in 2D. I hear so many people state on MRI Neuros say it shows a compression. They may well see a vessel but it does not mean it is compressing anything. Plenty of folk given an MRI without symptoms of TN would show a vascular component in the vicinity. Take a picture of me in front of the White House doesn’t mean I am interacting in any way with the White House. I would ask what he means by an abnormal vessel… Abnormal in the sense it can possibly be demonstrated in any number of non TN patients? I realise I am not being overly helpful but an MRI 2D means nothing. As in please don’t stress but ask questions.
My first neurosurgeon said that a blood vessel pressing on the Trigeminal nerve was usually the cause of TN and ordered an MRI. The MRI didn't show anything abnormal which in my case is really bad news. I've been on 1200 mg of Tegretol for almost a year, but the jaw and mouth pain persists. The earaches and face pain are helped, and I can how brush my teeth, so I guess the Tegretol has helped with some symptoms. But there is a horrible day long "attack" of extreme pain 3 or 4 times a month and nothing helps. I take 1 hydrocodone every hour for 5 or 6 hours before there is even the slightest relief. Then the next day the jaw and mouth pain goes back to a 3 or 4 level which I have tried to live with. I've become a virtual shut in for over a year now. Am seeing a new neurosurgeon next week for a second opinion. I can't face living like this. If you have something that can be treated with surgery, please try to be grateful, even though it is very frightening. Other people on this site have had the surgery and it was a success.