Wednesday, 9 April 2014

It's Not Just About Trigeminal Neuralgia...

We said in a post at the beginning of our blog that when we say we want an end to TN, we actually mean we want an end to all facial and head pain. It is simply a lot easier to say End TN than to list all the various types of pain. Besides, End TN does have a bit of a ring to it.

There is actually a long list of conditions causing facial pain.....and a lot of confusion.

The confusion is not just amongst the patients involved, but the medical profession too.

A person could consult several doctors and be given a different diagnosis each time. The fortunate thing is that very often (but not always) the same medication is used to treat the pain, no matter what it is called. However, when it comes to surgical options, people really need a correct diagnosis. For example, surgery such as an MVD (micro-vascular decompression) will only help if there is a compression on the Trigeminal Nerve. Therefore it would only help if the patient actually has classic TN due to a compression. But some patients are told they have Trigeminal Neuralgia, when in fact, they don’t. They then chase after surgeries which would do no good at all. In fact, they could come out worse than before.

We, as patients, need a name for our pain. With a name, we at least feel as though a doctor believes us. We need that. We also need a name so that family, friends and colleagues can learn about the condition. It almost feels as though we can justify our pain if we have a name for it.

And doctors need to have enough knowledge about facial pain, to be able to give it the correct name. Some of the names given are very generic and sometimes sound as though the doctor is not really too sure what to call it.

The book “Striking Back” by George Weigel and Kenneth F. Casey MD, is known as the bible in the world of facial pain. In it, there is a long list of various types of facial pain. 

No wonder it is so confusing.

And since the publication of that book, there have been changes made to the names of some of the conditions.

If some of the medical profession are as confused as their patients about those names, can we do anything to help?

Possibly trying to find a neurologist or facial pain specialist who really is a specialist would help. But perhaps that is not always possible. If this is the case, try to find a doctor/dentist with whom you feel comfortable, someone who listens and doesn’t rush you. One who even admits they don’t know too much, but they are prepared to learn can turn out to be one of the best.

Keep a pain diary. Write everything that happens. Try to describe the pain accurately, because they need to make a diagnosis based on how you describe your pain. You may think that your cheek flushing when you are in pain is unimportant, but that fact could possibly be the key to a correct diagnosis.

One day, hopefully there will be more knowledge out there......and hopefully there will be enough knowledge to actually treat and manage all of the head and facial pain conditions successfully.