Should every TN patient undergo MVD surgery even though MRI shows nothing ? Are all TN conditions related to nerve compression?

Living with type 2 & type 1 Trigeminal Neuralgia on both sides for past 10 years and experiencing facial pain from the age of 12 years old, you could say I am pretty much fed-up with all this pain and the not knowing how and why I have this awful disease is so upsetting.

What is the cause of Trigeminal Neuralgia, some people say its caused by dental procedures, infection, demyelinating diseases, or compression of the trigeminal nerve.

A few questions!

Q1: If TN pain is caused by compression of the trigeminal nerve, why and how does this happen ?

Q2: If TN is caused by a dental procedure, what exactly could be the problem or damage ? (could it still cause nerve compression or is it nerve damage or something else) ?

Q3: If TN is caused by an infection, what infection would it have been and what exactly can happen to the nerve to cause TN (what damage has been done) ?

Q4: Should every TN patient undergo MVD surgery even though MRI shows nothing ?

Q5: How does the TN patient know what caused their TN ? was it a dental procedure, was it an infection, was it demyelinating diseases, or was it compression of the trigeminal nerve ?

Q6: or is it hereditary, what decides when the TN develops at what age ?

Hi Dalles

on Q4 I am not a candidate for MVD surgery and not really surgery of any kind. The drs said that gamma knife for me would be the only one that might work but it could take 8 months to work and an 80 percent chance of it coming back with a vengeance. the drs advised against it so not a choice at all.


Hi Scott, my doctors also advise me not to have surgery, they said the success rate is low and there's a high chance of the TN condition to be made worst.

The trouble being now, the treatment of long term medication can cause other conditions which aid to suffering.

There is certainly not a god, why would such a god permit a world of war, sickness, pain, and death (human suffering is not love).

Hi Dallas,

I don't have too much to add except that:

I have seen two neurosurgeons and one said I had TN1 and the other TN2. My MRI did not show any compression but I knew something had to be touching the nerve because in one year I had gone from no medication to 3200mg gabapentin and 600mg tegretol a day and still had pain. We decided to go ahead with a MVD anyways. As it turns out I had a vein wrapped around the nerve. I am now off meds for almost a year, pain free.

Good luck,


My MRI 2 years ago and my MRI about a month ago both have shown no compression on the nerve. Despite this I'm on the waiting list for an MVD. I was thinking am I putting myself through this for nothing but having talked to a lot of people online and reading up on it 95% of people who have an MVD end up finding a compression regardless of MRI results. My neurosurgeon said he could damage the nerve by clamping it if I wanted if he doesn't find anything as an option (not sure about that one!). I have heard of people even having veins growing through the nerve. I think if there is a clear compression of the nerve on MRI then balloon compression is a good option because they already know what to do (for lack of better words) ... whereas with me they kinda need to get in there and have a look. TN can be caused by shingles though I am pretty sure I haven't had shingles. Demyelinating diseases usually show up on MRIs (one reason for an MRI is to check for multiple sclerosis) and you tend to have symptoms in more than one place. I hadn't had any dental procedures nor is there anything like this in my family history.

In answer to your questions.

1. They really do not know. I had bone compressing my nerve. Oh, the joys of having abnormally thick skull plates.

2. It could be everything from the nerve being damaged during the pulling of a tooth, to a root canal being over filled. I know between having my teeth moved back to fast with braces, which stretched the nerve, and chipping all four of my upper front teeth more that 50% away, I have bad TN pain in the front of my mouth.

3. The most common infection I have seen mentioned as a cause of TN is shingles.

4. No. Unless their signs of compression, most doctors will not recommend MVD surgery.

5. It can be all of the above. I knew I had dental caused TN in the front of my mouth, but until I had my first MVD I did not know about the bone in the base of my skull pressing on the nerve. If you have a diagnoses like MS, it will be apparent that would be a TN cause. If you got TN after having facial shingles, that would be look at as a cause, but the reality is often one does not really know.

6.Yes, it can run in families. While doctors will say TN is a disease of the elderly, I have read of a case where a four year old was diagnosed with TN, but she had been born with a blood vessel problem. The youngest patient I know to have had a MVD due to TN1 was 11 years old. This shows me it can happen at any age, but it is seen more often in older people.

There are several reasons why it occurs. An offending blood vessel could be rubbing against the Trigeminal nerve wearing the protective sheath away, and basically short-circuiting your head and face. I think I had a combination of a blood vessel issue and adding insult to injury 3 root canals within a three week period done that literally had the nerve above my lip and cheek jumping. It jumped for several hours after the procedure. I had years of TMJ issues. An endontist made a plastic mouth plate with a metal bar that snapped onto my bottom teeth so my upper and lower teeth couldnot touch. I wore it in my late thirties and into my forties. I had several root canals with no pain resolution over the years also. Things would quiet down and then flare up again. I recently bought the book Striking Back which is helping to piece this mess together for me. It’s become so complicated for me that I’m reading everything I can now. One thing for sure is that I am fed up with it robbing me of my joy!!

Mine was within 24 hours of extraction of tooth. I went to ER.

Tried meds for one year…

at the one year mark,
I had two compressions, not seen on MRI, found at MVD.

For now ,
MVD was right for me

Reply by Marv

Let me see if I can answer most of your questions.

I have had TN for 30 years or so. Over the past number of years

the cause has evolved from a disruption of the myelin sheath of the trigeminal nerve

by a shingles related virus, to a pulsation of a vein located behind your ear.

An MRI of that area does not always show the vein/nerve relationship. But,

if it does exist a wedge is placed between the vein and the nerve to stop the pulsation.

An actual cause and effect relationship is difficult to pin down.

In the case of damaging a healthy nerve by a dental procedure, that may exacerbate a

TN condition that already exists not necessarily cause it.

Nerve compression was probably discovered by serendipity in that various decompression

Techniques, balloon for example, seemed to work.

In my case I chose Gamma Knife which is none invasive specifically focused radiation beam

which does not affect surrounding organs but damages the nerve and prevents its conduction.

After 4 years have little or no TN response, down from 2 seizures 1200mg of tegretol and 600mg

of gabapentin to only 200mg of tegretol. Periodically I feel some low level jaw pain but all subsides

after a few days.

The both sides issue troubles me. I would proceed by taking an MRI and a brain scan to find out if

there are any other neurological issues impinging on the nerve. At this point you need a definitive


I have ATN. I recently started a discussion about MVD for people with Type 2 TN. I met with a neurosurgeon a couple of months ago. He offered me no help and gave me a referral for yet another specialist. He told me that I have "neuropathy" not "neuralgia". It confused me and still does.

After listening to other peoples' experiences with MVD I am convinced that surgery of any kind is not always a good thing for Type 2. Most doctors will not even offer it but some do.

My ATN was not caused by a dental procedure or an injury. I have had two MRI's that were both clear. I am also the fourth person in my family to have TN.

I am a year and a half into this and now have bilateral ATN. It seems the more questions I have the fewer answers I get.
You may have to read this a few times to really “get it” but this piece was written for doctors by a TN specialist / Neuroscientist from The UK.
Specifically read the part under " Pathogenesis"

As to your questions there is NO one cause…there are several proven causes and some that are suspected…and then in some cases cause is unknown.

Here is another thing I copy/pasted but lost where I got it from…

“The role, if any, of remyelination in initial symptomatic recovery after microvascular decompression is unclear. Clearly, remyelination cannot account for the immediate relief from neuralgia. In the longer term, however, it is possible that remyelination helps to ensure that relief of symptoms is sustained. Remyelination may also be responsible for spontaneous remission of trigeminal neuralgia in some patients. Failure of microvascular decompression to relieve symptoms is most common in patients with very long-standing disease, in whom severe local depletion of oligodendrocytes and astrocytes may prevent effective remyelination after decompressive surgery. A further possibility is that the aberrant remyelination that is occasionally seen in the compressed nerve root (Love et al., 1998) may, by preventing the separation of groups of apposed axons after decompression, contribute to the failure of this procedure in a few patients.”

The following was taken from The Facial Pain Foundation…really interesting.

Dr. Mark Linskey is a Professor of Neurological Surgery currently practicing at the University of CA, Irvine, in Orange County, CA ( He trained in microvascular decompression (MVD) for 7 years with Peter Jannetta and in Gamma Knife stereotactic radiosurgery (GKSR), glycerol rhizotomy and radiofrequency lesioning for 7 years with L Dade Lunsford at the first US gamma Knife unit at the University of Pittsburgh. He has continuously served on the Medical Advisory Board of TNA - The Facial pain association since 2003; currently serving as their Western Regional Director. In practice and out of training for more than 20 years, he published the first prospective cohort comparative clinical trial of MVD versus GKSR for typical trigeminal neuralgia and is an internationally-recognized expert, and experienced surgical subspecialist, in trigeminal neuralgia. He is currently the American College of Physicians (ACP) Trigeminal Neuralgia module editor for their physician point of care decision support tool “Smart Medicine” (formerly PIER - Physician Information & Education Resource). He is also the Co-Editor of the Trigeminal Neuralgia module for the rigorous evidence-based medicine periodic systematic review tool and physician decision-support resource, “Clinical Evidence”, published by the BMJ (British Medical Journal) for the British Medical Association.

Facial Pain The Research Imperative

By Mark E. Linskey, M.D.

From a twisted and perverse perspective, among facial pain patients, patients with classical trigeminal neuralgia (TN), are comparatively fortunate. We at least have surgical treatment options with reasonable chances for successful pain relief when current medical therapy fails. Yet even for TN patients, not all patients fare well. While in expert and experienced surgical hands, microvascular decompression (MVD) can lead to durable complete pain relief in about 80% of patients, this still leaves one in five TN patients still suffering. Patients seeking care in the general medical community are not so fortunate. MVD results can vary significantly surgeon-to-surgeon. Empiric experience over the last 20 years in my practice, would suggest that the success rate among less experienced and expert surgeons might run as low as 50%.

For those patients with multiple sclerosis-related TN, or who fail MVD, their plight can be improved with palliative destructive procedures directed towards the trigeminal nerve [stereotactic radiosurgery (SR, radiofrequency lesioning (RFL), glycerol rhizotomy (GR), and balloon compression (BC)]. However, these procedures serve best as temporizing measures, with up to 50% of patients with classical TN recurring within five years of the procedure. Each palliative destructive procedure runs the risk of facial numbness with its associated risk of new de-afferentation pain from nerve damage, and these risks accumulate and compound as destructive procedures are repeated. Thus overall, across the U.S., even for patients with classical TN, surgical intervention may realistically not provide adequate or long-lasting relief in an estimated 30-50% of cases.

But what about those patients with other forms of facial pain? In 2008, after 18 years of existence, The Trigeminal Neuralgia Association (TNA) changed its name to TNA – The Facial Pain Association (TNA-FPA) in recognition of the fact that patients with facial pain other than classical TN also needed education, support and help too. These conditions include TN2, neuropathic facial pain, facial pain of obscure etiology, and anesthesia dolorosa, among many others. For these patients, MVD rarely leaves a patient pain-free. Furthermore, while palliative destructive procedures can, and do help, they not only are less successful than for classical TN patients, they may actually worsen the situation through increased de-afferentation, despite the best of surgical intentions. While surgical stimulator surgery can help these patients in very select cases, the overall percentage of patients enjoying significant and durable relief is disappointingly small. If we now broaden our inquiry to include all facial pain patients that seek help from TNA-FPA, it seems likely that only about half will achieve adequate or long-lasting relief from their suffering through surgery. Clearly surgery alone is not the answer for too many of our patients, friends, and family who suffer from facial pain.

The word imperative refers to something that is both necessary and of vital or crucial importance. It may also refer to the expression of a command. For facial pain syndromes new discovery and therapeutic breakthroughs through basic science research is an absolute imperative in the first sense and an imperative from our patients and their loved ones in the second sense.

We know that vascular compression is a necessary cause for the majority of classical TN patients. Yet up to 40% of normal living patients and up to 50% of patients studied at autopsy have these vascular contacts without having TN. Clearly vascular compression, while necessary, is not sufficient. The logical additional factor, that many have speculated about, likely involves additional predispositions related to genetics and/or the biology of myelin nerve insulation, axonal damage, or both. In my opinion, studies of deferential gene expression comparing classical TN patients to normal population controls carry the highest chance of uncovering potentially new fruitful areas for investigation and future therapeutic exploitation for patients with classical TN.

While the hoped for discoveries from studying differential gene expression in cases of classical TN might be more generalizable to help patients with other facial pain syndromes, this is by no means certain. Thus, simultaneous additional lines of research inquiry are also desperately needed. These include the urgent need for a better understanding of the neurochemistry and the psycho-biology of chronic neuropathic pain and the fast-track development of new agents for clinical testing. It includes studies into the biology of nerve repair and regeneration, through both pharmacological means as well as potential cellular therapies including stem cells. It also includes the need to study safe means of modulating pain perception at the brain level through brain stimulation technology.

While it is simple and conceptually satisfying to talk about the search for one “cure”, this may be an elusive goal given the heterogeneity and wide variety of facial pain syndromes suffered by patients seeking help through the TNA-FPA. More than one “cure” may be needed depending on the individual circumstances of each patient. Yet the quest for a “cure”, whether one or many, all still depend on basic science research advances which are expensive and which take years to develop, test and realize.

As a surgeon, I long for the day when we have therapies that can increase our MVD results to near 100% success, as well as offer hope and more predictable treatment success chances to our non-classical TN facial pain patients. While I am biased by my surgical background, I doubt that these advances will involve a new pill distributing an agent non-specifically throughout our body. I strongly suspect that they will involve therapies that will be most effective locally and selectively at the site of pathology or damage, either through direct open surgical application, or needle or electrode delivery into the trigeminal nerve root, ganglia, or brain. Thus surgery will likely be an important component of any success realized through our research efforts.

If we wish the state of care for patients with facial pain to improve from the levels currently available, we are indeed faced with a research imperative. The need is great and the costs are considerable. The best way that most can help is through generous donation and ongoing, sustained, support for efforts such as those fostered by our own Facial Pain Research Foundation . We need everyone’s help and support to drive this mission forward and ultimately succeed.

I have had many questions about TN since my experience with it two years ago. I would like to share my thoughts with you. I understand completely if you don't agree with my conclusions, I truly believe everyone needs to be free to believe what they want and search for what works for them. I just want any who may have the same problem I did to get help because this seriously is THE WORST thing imaginable.

I am the kind of person who wants to see the evidence, I want answers that make sense, I want to know the mechanism of how things work. Some of my questions were 1. We have nerves and veins throughout our bodies intertwined everywhere so why does this happen only in one spot? 2. If this is a rare problem, why was I seeing new people with it(on the support groups) on a daily basis? 3. Why was I having so many other symptoms? 4. similar to yours above: how can neck trauma, dental work and MS tie in to the same problem? 5.I ran across a Dr., who had been an ER Dr. for over 20yrs. but was now only treating TN, his patients were showing improvement through change in diet.What? Why diet? 6. Why did NUCCA(may have that wrong) work for the guy in the book "What time Tuesday?"

So, long story short through research and a helpful doctor I came to my own conclusions. In my opinion there are different types of facial pain with slightly different causes, all from the same root problem. Mainly TN is not caused by the nerve/vein thing. It is caused by the nerves in the back of the neck having pressure put on them or being impinged either by a bulging disc or inflammation, the pain is then referred to the nerves in the face.( I hope that makes sense, I am not very good with explaining things through writing). Similar to why when my husband had a pinched nerve in his lower back he had pain in his big toe.

The root underlying cause to it all I believe is Lyme disease and it's co infections( some people who have had neck injuries, may not have an underlying disease). They affect the thyroid and adrenal glands as well as any other part of the body. This was the cause of my other symptoms that I had been told were from the seizure meds. After I was off the meds I still had the other symptoms. They cause inflammation and nerve and neuro problems. Lyme also causes dental problems.

I believe anything that gets rid of inflammation(anti inflammatory diet). and anything the aligns the spine/neck i.e. NUCCA will help and can completely get rid of TN pain. Personally I think regular chiropractic might be too severe and cause more problems.

I chose Mckenzie therapy because that is what the doctor I found uses. It took 4 weeks and my TN pain was completely gone. It came back a week ago on the other side slightly different area than before but started the same with tooth pain, and It is already gone, I was so glad I knew what to do. I can see a direct correlation between the exercise I do and the pain going away. I would wake in the night with my teeth and cheek throbbing, do a round of my exercises and the pain was gone and I could go back to sleep. It is important to address the inflammation. I know it sounds too simple and too good to be true but it worked for me, I hope it can work for others.

Not sure if you are having any other symptoms but You might find it interesting to read the website Stop the thyroid madness, or google symptoms of lyme, adrenal fatigue or thyroid.

Never be afraid to ask question or to believe what you believe. If you run into people or doctors who get annoyed at your questions or attack your beliefs be true to yourself and find new friends and a new doctor. Quality is always better than quantity.

I had mvd in March, it was unsuccessful and in fact, I woke up and the pain was so different and so much worse. The initial mri did show something but the pre-surgery mri showed nothing. My doc was confident he would find something when he went in and he found an artery and a vein both pressing on the nerve. A successful surgery in fixing that problem but definitely not the TN1. When asked why no success, he responded that sometimes that (arteries and veins) are not the problem and they dont know what causes it. I had a great experienced surgeon and believe he did whatever he needed to do but…

So I am still on meds and my recent flare up in June still has me on the meds from 2400mg of Tegretol down to 1200 and hoping to go less. I cant talk or chew without pain. Id like to hear more about a holistic approach…I will try anything now!

Hi Stella, So sorry to hear the MVD surgery did not work, you are most certainly a strong positive and brave person to give the MVD a chance.

I myself couldn't go through with such surgery even if my GP offered me that chance, strangely enough he advised me against such surgery because of the failure rate and the strong percentage of the pain always coming back.

I strongly believe my TN type 2 and type 1 originates from early dental procedures, you could say the UK NHS unawarely have caused my TN. If I could prove this was the case, I would actually prosecute (I wonder if this has ever been done before) ?

I just thought at age 58 that I was young, healthy, etc and was told that the younger you got the surgery done the more chance at success there would be. He said he had approx 80-90% success rate…I guess I never thought about the other 10-20%…high hopes!
Have you tried any other invasive options? I am thinking about radio rhizotomy but am really worried about the possibility of the anaesthesia
dolorosa…I am obviously not good with playing the “odds”, but this latest flareup is making me desperate!

I recommend you try Gamma Knife. But, it must be done by an experienced team consisting of, MRI specialists,

physicists, neurologists, and neurosurgeons. I had that kind of team for my success story. I too was as high as 2400 mg. of Tegretol and a high level 600+ mg Gabapentin. As I have stated before, I now take 200-400 mg of Tegretol and NO Gabapentin. Things have stayed the same for 5 years.

The team with TN experience is the key. They have to have done this procedure multiple times with a solid track record.



Marv…thx for your reply and sharing your positive experience with me. Where did you get your gamma done?
Any thoughts on the radio rhizotomy?


My GK was done at Washington Hospital Center in Washington, DC.

They have a team dedicated to TN.

RR is a destructive procedure which essentially eliminates conduction.

I am not aware of the long range affects of RR. Whether the nerve can reintroduce

itself through the myelin sheath is something to ask a physician.

GK is a disruptive procedure. The actual process is not specifically defined.

The results can last for 3 to 5 years or longer which can be extended with

a prophylaxis level of Tegretol as it is in my case.