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This page has been written by the Spasticity Team at the National Hospital for Neurology and Neurosurgery.
This page contains information for patients (or their family or carers) who have been referred to our service or are under the care of the team at this hospital. It is not intended to replace discussion with your consultant.
Spasticity can be described as involuntary muscle stiffness. It is a common symptom of neurological disease, and can range from mild to severe and change over time, often from day to day or hour to hour. Other associated features can include spasms, pain, weakness and clonus. Unfortunately prolonged spasticity may result in shortening of muscles and changes in the ligaments and joints which limit range of movement of limbs, these changes are called contractures and can co-exist with spasticity. Contractures however are not usually responsive to drug treatments.
Most people with mild to moderate spasticity can control their symptoms with exercises (including standing and stretches), phyiotherapy, prevention of trigger factors and oral anti-spasticity medication. However, despite appropriate treatment and management of trigger factors, spasticity can become severe and affect all aspects of daily life. Intrathecal phenol may be considered at this stage.
Trigger Factors
- urinary retention or infections
- bowel impaction, constipation
- red or broken skin areas
- poor positions in lying or sitting
- tight fitting clothes or splints
- pain
- infections
- low mood.
‘Intrathecal’ refers to the space surrounding the spinal cord; this space is filled with cerebrospinal fluid (CSF). Phenol is a drug which, if expertly injected into the intrathecal space of the spine, damages motor nerves and relieves persistent and sometimes painful spasticity and spasms in your legs. This can make your legs easier to position and more comfortable when you are sitting or lying down. It is important to realise that the phenol destroys the nerves to the legs and therefore paralyses them; this is why it is a permanent solution to treat severe spasticity.
The potential benefits are to reduce:
- Spasticity, often described as a feeling of stiffness in your legs.
- Spasms, or involuntary contractions of muscles, which can make your legs suddenly move towards or away from your body and can be painful.
Minimising these symptoms can have an impact on the way you can be positioned in your bed and chair. It can make you feel more comfortable and ease the effort of washing and dressing your lower half.
The phenol injection damages the nerves leaving the spinal cord, this is how it treats the spasticity and spasms.
- Your legs may feel very weak and loose but you should not feel weak above the waist. This means extra care must be taken when handling your legs to ensure they are well supported and the hips are aligned properly in bed, this will avoid any trauma to the joints.
- As your legs will now be loose, there is a possible increase in risk for clot formation (deep vein thrombosis). We recommend your legs are regularly moved by a family member or carer to reduce this risk.
- The injections are targeted to the nerves which move your legs (motor nerves). However they can sometimes affect the sensory nerves and may cause your legs to feel different or numb. Most people don’t notice any change but for some people this different sensation can take time to get used to. The numbness may increase the risk of pressure sores as it may prevent you from noticing an area, which would previously have been uncomfortable or painful. It is important that someone is able to monitor your skin for any signs of redness or breakdown on a regular basis. In addition you may not be able to feel when someone touches your legs or lower body.
- Intrathecal phenol may interfere with bladder or bowel control. If this occurs it tends to be temporary (four to five weeks) but can have a longer-term permanent effect. If these functions are already affected (for example if you use an indwelling catheter or regularly use suppositories or enemas), the injections are unlikely to cause any extra problems. Options to manage your bladder and bowels both in the short and long term following the intrathecal phenol will be discussed with you. Community nursing teams often have expertise in supporting people to manage their bladder and bowels; it may be helpful to involve them in the discussions.
- The injections can affect your sexual function. For men it can reduce the effectiveness of erections and for women the reduction in lower half sensation may minimise what they feel.
The team will discuss these side effects with you before the Doctor asks you to consent to going ahead with the treatment.
The initial treatment requires an inpatient hospital stay or daycase admissions. During the initial assessment a doctor, a nurse and a physiotherapist all who specialise in managing spasticity will assess you.
The assessment will identify the main problems your spasticity and spasms cause you on a daily basis. In addition the specialist nurse and physiotherapist will want to move and stretch your legs so as they can gain a better understanding of how your legs feel when moved. They will also measure the position your legs are in when you are sitting and lying. If you have pain when being moved you will only be moved within the limits of your pain, in other words you will guide how much your legs are moved.
The assessment and measures enable the team to give you clear guidance on how they think the intrathecal phenol may help you. Together with the team you, and your carers and family, will identify a goal amenable to treatment with intrathecal phenol that would have a positive impact on your daily care and quality of life.
Throughout this process the spasticity management team will discuss all the information with you, and if you wish your family. The decision of whether intrathecal phenol is the right treatment for you can then be made together.
There are two distinct stages to the treatment:
- A trial injection of anaesthetic
- The phenol injection(s)
Each phenol injection targets one leg, so if you have spasticity in both of your legs you will need two phenol injections; one to treat each leg. The most effective way to target the whole leg is to inject the drugs into your spine. Both the trial anaesthetic and phenol are injected into the CSF filled cavity surrounding the spinal cord called the intrathecal space.
Your doctor will discuss the risks and benefit and gain your consent for the trial and subsequent injection if the trial is found to be helpful and you decide to proceed.
This consists of a test injection of anaesthetic. This allows you to experience the likely effect of the phenol injection with an anaesthetic drug that has a temporary effect (30 minutes to two hours). The trial injection takes place in the radiology department or theatre so that an X-ray machine is available if necessary and an anaesthetist is present to monitor your blood pressure. The injection is given via a lumbar puncture, (which you may have had before) but instead of taking fluid (CSF) out from around the spinal cord a small amount of drug is injected.
You will be asked to lie on your side; if this is difficult do not worry, there will be equipment and team members to help you get into position and to support you.
Once you are lying on your side a small area on your lower back will be made temporarily numb with local anaesthetic and then the test anaesthetic will be injected via a lumbar puncture into your spine. There should be little or no pain during the procedure.
Following the injection you may need to be repositioned and tilted slightly forward so the drug reaches the right area in your spine. Your blood pressure and pulse will be recorded very regularly during this time.
You will need to stay in this position for five minutes after the trial injection. You will be supported to do this and a nurse will be with you at all times. After the time for the injection to work has elapsed the nurse specialist and physiotherapist will reassess the effect on your legs with you. A family member or carer can be present for this assessment if you wish. The temporary effect can last between 30 minutes to two hours or sometimes longer. This period is the main decision making time, as you will now have had all the information and be experiencing the effect of the injection. Most people find it helpful to have a significant other with them at this time so you can discuss the outcome with them and the team and decide whether permanent injections (phenol) would be beneficial to you.
After returning to the ward your blood pressure, pulse and temperature will continue to be monitored for a short time. You will be able to eat and drink and if possible sit out of bed.
After the trial you will be given an opportunity to discuss the outcome and your goal for treatment with the consultant or a senior member of the medical team. You, together with the whole multidisciplinary team, will then decide whether to proceed with the phenol injections.
If you decide to go ahead with the phenol injections the procedure is the same as described above for the trial injection, although the drug injected is phenol and you will need to maintain the position that you are put in after the injection for 20 minutes. These injections are generally completed at your bedside on the ward. They can be a bit uncomfortable but we will do everything we can to support you and there will be a nurse with you throughout this time.
Once the intrathecal phenol injection is completed (20 minutes) the phenol will have worked and you will see the effect with reduced stiffness and spasm.
In the past, people considering intrathecal phenol injections have asked us the following questions, which we have included here for your information.
Oral doses of antispasticity drugs e.g. baclofen and tizanidine - do I keep taking them?
Yes. It is important that your oral anti-spasticity medications are slowly reduced under the guidance of the spasticity team whilst in hospital and following discharge. Sometimes if your arms have a lot of spasticity you may need to stay on some oral medication for spasticity long-term.
Will Intrathecal Phenol cure my underlying condition?
No - it is important to appreciate that the phenol injections are useful only in managing the symptoms of spasticity and spasms in your legs. They will not cure your neurological condition or influence its course.
Can I take other medications?
You may need to take other medications but there are no interactions with the intrathecal phenol injections.
Are the injections safe?
During the trial, or less commonly after the phenol injections, your blood pressure could drop. This can make you feel slightly light headed or nauseous. If this occurs it tends to do so just after the injection and is usually short lived; the doctor and nurse will closely monitor you during this time.
A headache may occur after a lumbar puncture but should last no longer than a few days. It can be eased by staying well hydrated.
How long will I be in hospital?
In total it is common for people to require three injections, a trial injection, and two phenol injections one to target each leg. Each injection is done on a different day and you are normally able to go home the day of, or after, the last phenol injection. Most people are in hospital for three to five days. Sometimes the injections are completed one at a time as a day patient as you may not require all three, the team will guide what is right for you.
Does the treatment work right away?
Yes. Once the procedure is completed (20 minutes) the phenol will have worked and you will see the effect.
Does it always work?
Most people (more than two thirds) get an excellent result from the injections and do not need any further treatment. However, although the effects of intrathecal phenol can be permanent and there is no method of reversing the procedure, the effect can sometimes wears off over time in some people. If the spasticity, spasms or pain return there should be no problem about repeating the phenol injections. Normally this is done as a day case. You can re-access the service by either you or a member of your family or community team contacting the specialist nurse for spasticity management.
If you have any questions about spasticity or intrathecal phenol please do not hesitate to contact a member of our team on the number below, we will be happy to answer them for you.
Spasticity Service
The National Hospital for Neurology and Neurosurgery Box 113
Queen Square London WC1N 3BG
Spasticity Admin email: uclh.
Spasticity Admin: 020 3448 3112
Spasticity nurses: 020 3448 3439
If not available please leave a message on the answer phone / voicemail and your call will be returned as soon as possible. The line is confidential.
Spasticity physiotherapists: 020 3448 3170
UCLH Switchboard: 0845 155 5000 / 020 3456 7890
Website: www.uclh.nhs.uk/nhnn
Services
Page last updated: 24 September 2024
Review due: 01 September 2026