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Coping with long-term Bell’s palsy and Ramsay Hunt Syndrome

Having Bell’s palsy or Ramsay Hunt Syndrome for a long time can be one of the most difficult and life-changing obstacles in your life. It is very easy to lose hope and feel alone in this situation. Feel like no one can understand what you are going through, and that there is little or no help to be found.

We hear you.

We walked this path with each and every of our patient. Almost every patient that comes to our clinic arrives with broken spirits and with little or no hope.

That is why, with every patient, our very first step is to rekindle your hope. We believe that the best way to do that, is through sharing knowledge and helping you understand what happened. That is what we will cover in this article.

Estimated reading time: 9 minutes

Please note, in this article we are speaking about the classical case of peripheral facial palsy, such as Bell’s palsy and Ramsay Hunt Syndrome. We will use the term “Bell’s palsy” to imply both facial palsy and Ramsay Hunt Syndrome.

Bell’s palsy’s long-term emotional effect

Even if you just got Bell’s palsy, or if you have been suffering from it for many years, you are afraid to believe that nothing can be done, and it will remain like this forever. Especially when you read online or hear from your physician that you simply have to learn to live with it.

Bell’s palsy is hard. It is very hard.

For now, you do not have your smile. And nobody can understand how it feels, unless they have been through it themselves.

You do not need to pretend that you are okay just to make others feel more comfortable. You do not need to rely on your willpower alone to get through this situation.

Our face helps us to express our emotions, to convey our message to the world. When half of your face is affected, it also affects our emotional condition.

So it is okay not to be okay in this situation.

It is okay to take time off and seek emotional support. A good idea is to reach out to the community of other facial palsy sufferers, who understand what you’re going through.

It might also be helpful to seek professional help if you do not know how to handle this. Especially, if you do not get enough emotional support from your family and close friends.

It does not matter what your other regular daily challenges are, you need to take care of yourself first in this difficult time.

What can help you cope with long-term Bell’s palsy

Your best friend is knowledge and understanding. We are here to answer your questions and to help you on this difficult journey.

It is estimated that there are about 15 million people in the world who have not fully recovered after facial paralysis. At our clinic, we might not have sufficient capacity to help each and every one who needs clarity, support and help to achieve recovery.

What we can do, is share our knowledge and experience, provide you with the understanding of what happened to you and that it is NOT the end of your hopes for recovery. When you know and understand what it is and what you can expect, it reduces your fears and shows some light at the end of the tunnel.

Understanding long-term Bell’s palsy

First, let’s establish what is a long-term Bell’s palsy and how long it can actually last. For simplicity, we will call “Bell’s Palsy” all peripheral facial palsy types including Ramsay Hunt Syndrome, post-operational and post-traumatic facial palsies.

Bell’s palsy process

If the damage to the facial nerve was only superficial, your Bell’s palsy will be rather short. You should recover fully within 2 to 3 weeks, close the chapter, forget about it, continue living as you were.

Long-term Bell’s palsy happens when the damage to the facial nerve was more severe. Then, degeneration of facial nerve fibers takes place, followed by regeneration, after the damaging factor has been removed. The process of regeneration takes a substantial amount of time, because your damaged and degenerated facial nerve fibres have to grow back.

Complications can develop as a result of long-term recovery. These may include synkinesis (involuntary facial movements), increased tone of facial muscles, tightness of the face, facial pains, dry eye or excessive lacrimation and some others.

To explain it in relatively simple terms, the whole process of recovery after Bell’s palsy happens like this:

  1. The facial nerve sustains a damage and cannot conduct signals going from the brain to the facial muscles. This is called a conduction block.
  2. Option 1: if the damage was superficial, your facial nerve will recover within 2–4 weeks, and you will forget it ever happened. This happens in about 70-85% of all Bell’s palsy cases.
  3. Option 2: if the damage was severe, the regeneration of the facial nerve will require anywhere within 4 weeks to 4 months. This is the most likely scenario in Ramsay Hunt cases and some cases of Bell’s palsy. First movements will appear within this time.
  4. Once the first movements appear, your facial paralysis finishes. Why? Because the facial nerve is not disconnected from your face anymore. Your face can receive signals again.

You do not have a paralysis after 1 or more years since Bell’s palsy

This is THE most important point we want you to understand.

You may think that if even after 1 year, 10 years or 30 years your face still does not move as before, if your facial movements are too small, too rough or too disorganized, you still have a paralysis.

That is not the case. This is NOT a paralysis. These symptoms are complications.

Take a look at this patient’s affected side as she is smiling with a broad smile. Her facial palsy happened more than 30 years ago, when she was less than 1 year old.

It might look like there is little movement, so the assumption would be that this side of the face is still paralysed.

It is not the case. Lack of movements is not caused by the paralysis, but by disrupted balance in mimetic signals that your brain sends to the affected side.

Healthy and affected side of Bell's palsy patient after 30 years of facial palsy
Healthy and affected side of Bell’s palsy patient

Measurement tools help to reveal when facial paralysis ends

That is why for all patients who come to the Crystal Touch clinic, we measure their facial nerve. We do a Nerve Conduction Study (extended protocol), and we also perform a Synkinetic Correlation Test.

Nerve Conduction Study is meant to measure the level of recovery of the facial nerve. It is done with special equipment, which we have in the clinic. It helps to see how well the connection between the brain and the facial muscles has been restored.

Synkinetic Correlation Test is the test which we have developed in our clinic, and it is meant to measure the difference in the structure of the signals that the brain is sending to the healthy side compared to the affected side.

Here is the result of a Synkinetic Correlation Test for the patient from before. This shows clearly how the brain is managing signals on the affected and healthy sides. The blue graph reflects the activity of the eye area. The green graph reflects the activity of the mouth area. A flat graph means that the muscles are relaxed. Some activity in the graph means that the muscles are actively contracting.

Synkinetic Correlation Analysis
Synkinetic Correlation Test for a patient after Bell’s palsy

You can see that on the affected side, compared to the healthy side, the pattern of activity is different. You can see that when a patient is smiling, on her healthy side, the area of the eye remains relaxed (flat blue graphs on the left).

If you compare the activity of the mouth area (green graphs) on healthy and affected sides, you will see that activity on the affected side is much higher.

These measurements serve as a proof that after 30 years, this patient’s muscles are NOT paralysed, even if there is no visible movement. The muscles are active, they contract.

You can see that on the healthy side, the contractions are less intense, and produce much better results than higher levels of contraction on the affected side. This is because the balance of the signals becomes disrupted, and the muscles confront each other and stand each other in the way.

There are deeply rooted reasons that cause this disruption in signals intensity during the long recovery period while the facial nerve is regenerating. We will not go over them in detail now. What you need to understand now is that the lack of movement on your face after 1, 20 or 40 years since your facial palsy does NOT mean that your muscles are paralysed. It means that the muscles stand each other in the way. When you try to smile, the muscles that pull down the mouth corner contract together with the muscles that pull up the mouth corner. As a result, your mouth corner does not move, as it is being pulled in opposite directions.

Balance of facial movements after long-term Bell’s palsy can be improved

The mechanism behind the imbalanced signals sent from the brain to the facial muscles is similar to a habit. In simple terms, during a long recovery and after, your brain develops a habit to contract facial muscles on the affected side in this imbalanced way, causing synkinesis and other complications.

Through these quantitative tests, we can confirm that the facial nerve does not become injured forever. It recovers.

If it is not injured permanently, and it is a habit that causes imperfect facial movements on the affected side, it means there has to be a way to improve the situation.

As any habits, the habits on the face can be changed. It will take certain effort. It will require consistent work, regularity, dedication, commitment, and of course, it may require some guidance and professional support.

We have walked this path with hundreds of our patients, and we saw how they rise above their fears, their worries. How they learn to smile again from inside despite all the obstacles on their way.

Do not be scared. You can work on the Bell’s Palsy complications, and if you want to improve, you need to prepare to take an effort.

As Confucius once said, “A journey of a thousand miles begins with a single step”.

We are here to help you on this journey.

Alex Pashov

Alex Pashov

Co-founder of Crystal Touch clinic and Bell's palsy expert.

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