Trigeminal Neuralgia

[jbodington]

Trigeminal neuralgia (TN) has been mentioned in various categories and, for those who do have it, the pain is intense and this topic justifies its own category.

I had an acoustic neuroma removed in 1986.  11 years later I had the first signs of TN.  The cause was scaring inside due to the 1986 surgery and various things getting pulled around.  After 6 years of Tegretol, Carbatrol, Trileptal, Neurontin, Topamax, Baclofen, Chiropractic, Acupuncture and wishful thinking  - I had another surgery.  This surgery is called microvascular decompression (MVD), it worked, I have been pain and drug free for 3 years.

To manage the drugs, I saw Dr. Graff-Radford at Cedars Saini's Pain Clinic in LA.  The MVD was done by Dr. Shahinian, also a Cedars.  I was very impressed by both, chose them after considering many others, and I would go back to each.

[jbodington]

There have been several requests for more information on the surgery.

First, the pain is usually casued by a blood vessel touching and irritating the trigeminal nerve.  The pain is supposed to be worse than kidney stones (yes, I had those too) and child birth (I do not know about that 'cause I'm a guy).  An MVD involves another hole in your head.  The surgeon goes in, separates the blood vessel from the nerve, pads the space between the two, glues things in place and then closes up.  Dr. Shahinian did mine with an endoscope, the new hole is the size of a dime, post-op was not a picnic but life got very good fast.  No pain, no drugs.

An MVD on an acoustic neuroma patient can be a challenge becasue you may not be "fresh".  You may have scar tissue and altered anatomy inside your head that make a sugeon's job more difficult.  Go to a pro.  I interviewed four neurosurgeons before deciding on Dr. Shahinian.

[Battyp]

Interesting info, thanks for sharing!
If you've had kidney stones you have experienced childbirth I worked on the surgical floor and saw the pain the guys went through with that and all the women said now you know how your wife felt having your kids  LOL

[Sue]

This one scares me to death. Every little twitch and ping and odd feeling I get on my AN side, I pray isn't the start of Trigeminal Neuralgia.

Sue in Vancouver

[Captain Deb]

Guess I'll have to google trigeminal neuralgia.  I've been a post-op headache sufferer for almost 4 years and some of my headaches are unbelievable.  Always on the AN side and around the surgical site.  I've had some relief with injectable Imitrex, but I have a headache of some sort daily, and a "brainwreck" about once a week in spite of trigger point injections and 1800 mg of Neurontin daily! I'd love to hear more about your symptoms, j-bod.
Capt Deb

[Sue]

Boy, I think this is a whole 'nother kettle of fish.  Hopefully, nothing I will ever have to experience first hand.  Or anyone, for that matter.  My sympathies to anyone suffering with this.  And the headaches.  No fun.
 

Sue

[Kilroy1976]

I did some research on Trigeminal Neuralgia a while back, when I first started to have pain in my face after radiosurgery. It may (or may not) be of interest that there is a gamma knife procedure to relieve the pain.

http://www.irsa.org/trigeminal_neuralgia.html

[jbodington]

Capt Deb:

A good web site for those with TN is http://facial-neuralgia.org/.  The organization is fantastic and has been very helpful to many suffers. 

Now, Capt Deb, you and others asked for more info about the symptoms.  It is NOT pain around the AN surgical site.  It is generally a very sharp, intense, shooting pain that feels as though it is inside your jaw, upper cheek or forehead.  These loci are the three brances of the trigeminal nerve.  For me, the pain dropped me to my knees.  It is quite strong and can come in short bursts.

If you think you have it, go to a neurologist and ask.  If he/she puts you on Tegretol to confirm a diagnosis, that is fine.  If he/she wants you to take it long term rather than one of the newer and better drugs, my advice is that you should find a new neurologitst.

[jbodington]

A previous post refered to gamma knife treatment for TN.  I did a lot of research on this and must comment.  Gamma Knife seems OK to me if you are too infirm to withstand a crainieal surgery or are comparatively old.  Its success rate is lower than that of MVD, no one knows why it works some of the time and the long-term safety of radiation to the head is still not proven.  TN is a mechanical problem, and MVD is a mechanical solution.  The notion of doing more damage (that is what gamma does) to stop a mechanical problem seems hard to justify in many circumstances. 

[Kilroy1976]

Its success rate is lower than that of MVD, no one knows why it works some of the time and the long-term safety of radiation to the head is still not proven.  TN is a mechanical problem, and MVD is a mechanical solution.  The notion of doing more damage (that is what gamma does) to stop a mechanical problem seems hard to justify in many circumstances. 

But the local Gamma Knife facility's commercial calls it "201 rays of hope..."

At any rate, I make no claims about the success rate of the Gamma Knife procedure or its dangers. I just thought that it might be of some value to mention that it is out there.

[marystro]

Hi J-bod,

In the website, it says TN may stop suddenly for weeks, months, years and then return.  In your research, have you come across the reasons of the cessation and recurrence?  I had short sharp stabbing pain for a week on and off right before my CK.  Then it disappeared "miraculously".  The doctors all suspected it was caused by irritation of the trigeminal nerve by the AN.  I am keeping my fingers crossed that it will never return.  I am praying it's not the onset of TN.  It was the most excruciating pain I ever experienced in my life.

Mary

[jbodington]

Mary:

Your "short sharp stabbing" pain does sound like TN but I am not a doctor.  Mine started that way, it did not happen again for a few months, then it started to occur more and more.  Eventually it was nearly constant.  It woke me in the morning.  I encourage you to visit an experienced doctor.  If you can go to LA, I was very impressed with Graff-Radford.

Yes, TN can go away.  I'll defer to doctors for the potential reasons. 

But, my understanding is that it usually does return.  During the 6 years that I had TN, I did have one "vacation" of about 6 months.  It then came back and eventually could not be controlled with drugs.  My only option at that point was some kind of intervension and I chose an MVD.  Gamma Knife and other options ought to be considered, everyone is different.

[marystro]

Hi J-bod,
 
My pain that I experienced was in my nose on the AN side.  I only had it for about 1 week between AN diagnosis and CK.  May be a total of 5 or 6 times lasting a second or two only.  And it has been gone for over 2 months since CK started.

The doctors said my pain was possibly caused by irritation of the trigeminal nerve by the tumor since it is quite close to the brainstem and other nerves.  I am hoping it's the case and that its disappearance is an indication of AN is under control or my stress is reduced...

Mary

[Windsong]

Hi Marystro,

How did that nose thing feel pls? You said on the An side but where on the nose?? And in what way? Thanks.

Windsong

[marystro]

It felt like shooting pain inside the nose transversing up on the AN side.  It was like electric shock.  It happened a total of 5 - 6 times for about a second or so and mostly when I was chewing food on that side.  It was so painful that it brought on tears .  I guess nerve pain is the worst.  I was very stressed out by that during that week when it happened.  Then the weekend before I went to Stanford for CK, it stopped and hasn't re-occured since then for over 2 months.