Overview

Understanding Parsonage-Turner Syndrome and Your Options

Living with Parsonage-Turner Syndrome (PTS) is not easy; it is challenging and you may feel frustrated and saddened by the effects of muscle loss and muscle weakness. However, there is hope. The good news is that there are surgical options available to help restore movement in your muscles and improve the quality of life. This article will go through these options including nerve grafts and muscle transfers, to help you feel more well-informed and confident about your prospects.  

What are the surgical options for Parsonage-Turner syndrome?

Surgery becomes an option for PTS when symptoms carry on, persist and the person affected by PTS does not recover for a long period of time. Thus, there is no restored muscle function and or nerve regeneration by 6 to 9 months.¹ For instance, if someone with PTS has been experiencing chronic muscle weakness and has long-term paralysis of over 18 months then muscle transfer is seen as the best option.² 

The main options for surgery include:

• Nerve grafts: Are used when a nerve end has been damaged, leading to gaps between the nerve endings. So, a healthy nerve is stitched between the ends of a damaged nerve to bridge the gap and restore the signalling pathway³
• Nerve transfers: Are a form of surgery that reroutes a healthy functioning nerve or part of a functioning nerve to a nerve that is damaged and is close to the muscle which needs restored movement. As a result, the muscle can work faster because the nerve is closer to the muscle, so the nerve signal can travel faster to stimulate the muscle⁴
• Muscle transfers: If the nerve has not recovered and there is significant muscle weakness, then surgeons can take a healthy muscle and its tendon and attach it to where the damaged muscle used to connect to. This means the healthy muscle can now contract and create movement where the damaged muscle could not⁵

Now that you know the main surgical options, it’s important to understand when surgery is considered and your options in more detail so you know what to expect. 

Understanding Parsonage-Turner syndrome

Parsonage - Turner Syndrome also has other names which you may or may not know. PTS is also known as neuralgic amyotrophy or acute peripheral neuropathy. PTS mainly affects the brachial plexus, the network of nerves that control your shoulder, arm and hand,  causing sudden pain.⁶ It is considered a rare condition with only 1 to 3 cases per 100,000 people diagnosed each year. However, this number is likely much higher in reality because many people live with symptoms for a long time without getting a diagnosis or any medical attention, meaning PTS is an underreported and underdiagnosed condition.⁶ Experts believe the true number may be closer to 20 to 30 cases per 100,000 people each year, with another study claiming it to be even higher with 1 in every 1000 people.^7,8 It mainly affects men more than women and is more frequent in people in their thirties and forties.⁷ 

Symptoms of PTS include:

• Muscle weakness 
• Tingling or numbness 
• Extreme, one-sided pain in the shoulder starting at the top of the shoulder blade and moving to the neck and arm⁷

Why timing and treatment choice matter

Why surgery is not always immediate

You may be thinking why can you not get surgery straight away for PTS? The reason for this is because doctors wait before opting for surgery as those affected with PTS typically spontaneously recover. They can recover after 6 months and even randomly after a year of having symptoms, and full improvement can take two years or even more.² So, surgery is not the first step in treating PTS. Hence, first-line treatment for PTS is the management of symptoms, possibly using steroids and rehabilitation, i.e. through physiotherapy.⁹ The management of PTS is also often divided into two phases: acute and chronic. 

During the acute phase, the first few weeks, the focus is on treating the pain and protecting the arm. To do this, pain relief like opioids and anti-inflammatory medicine will be prescribed. Medications for nerve pain, like certain antidepressants or anti-seizure drugs, usually take longer to work and do not provide much relief at the start of treatment. Due to this, fast-acting pain relief is preferred because the severe pain usually lasts only for a few weeks.¹⁰ Furthermore, corticosteroids like oral prednisone can reduce the pain more quickly and cause more efficient recovery in those with PTS, but only in the first 2 weeks of treatment.^7,10  To protect the arm from further pain and worsening the condition, it is important to avoid using the arm. This is done by immobilisation therapy and using a shoulder brace.^10,11

The chronic phase can occur between multiple weeks to several months. During the chronic phase, the muscle tissue is lost, and fat replaces the muscle.¹² In the chronic phase, after pain has improved, physical therapy and occupational therapy are both carried out. Physical therapy helps to improve flexibility, retrain the nerves and muscles to work together, and gradually build strength by exercising the muscles and joints.¹³

Surgery becomes a viable option when there is prolonged muscle weakness even after management, so no natural recovery has occurred. Another factor is if imaging techniques show that the nerve is severely compressed and narrowed, especially in several areas.^2,9  However, this is all on a case-by-case basis, so your doctor will evaluate your specific situation and discuss whether surgery is appropriate based on the muscles involved and the severity of damage.

Surgical options in detail

Nerve Grafts

As mentioned, nerve grafts bridge the gap between the two ends of a damaged nerve using a healthy nerve. PTS can narrow the nerves to a great extent and this can leave a gap and when this narrowing exceeds 75% that is when a nerve graft is considered.² There are many different types of nerve grafts: artificial, non-artificial and autologous. An artificial nerve graft is when a man-made implant is created because there may be a lack of donor nerve tissue. This brings us on to an autologous nerve graft, which is when the nerve tissue is taken from a donor. Non-artificial nerve graft is another term for autologous nerve graft, meaning it is not man-made and comes from a human body.³ Donor nerve grafts cannot always be done as there is limited donor tissue available. 

The type of nerve graft and its success is dependent on the distance of the gap. The smaller the gap (less than 3 cm), the more successful the graft is, and it leads to a better outcome for the patient, if they are not elderly and the graft is done early on from their initial symptoms.^3,14,15 The most common nerve used in a nerve graft is the sural nerve, a nerve that originates from the upper leg.¹⁴   

Nerve grafts may be unsuccessful as the nerve fibres may fail to grow, causing incomplete regeneration and recovery.³ Other drawbacks are that where the nerve has been harvested, there can be loss of sensation in that area, a painful nerve bump forming at that site, as well as scarring.¹⁵

Muscle Transfers

Muscle transfer or tendon transfer is for instances of non-recovery for more than a year.² Thus, it can be considered as a last resort for PTS treatment. This is due to the fact that it is too late for nerve transfer, as the time taken for the nerve to grow back can cause the muscle to completely lose its ability to respond. A healthy tendon from another muscle replaces the lost function. Another type of muscle transfer is microvascular muscle transfer, whereby a healthy muscle is transplanted along with its nerve supply to restore movement. Sometimes this can be done alongside a nerve transfer from outside the bundle of nerves in the shoulder to give the muscle proper nerve signals. Intensive rehabilitation is required after a tendon transfer, beginning with preventing movement of the operated area. Tendon transfers can lead to repaired motor function and joint movement. This leads to a better quality of life for those with PTS as they can gain back independence in carrying out tasks.

Summary

Parsonage-Turner Syndrome is a rare condition affecting the nerves in the shoulder. Surgery is considered when recovery has not occurred naturally, and with non-surgical methods like pain-relief medications. Surgical options include nerve grafts and tendon transfers to restore nerve signalling, and treatment is best done early before the muscle has suffered significant damage, such as loss of muscle tissue. Muscle transfer is when long-term muscle weakness occurs and recovery takes time and can happen spontaneously. The timing from the onset of symptoms and the extent of the nerve damage impacts what treatment is opted for.