Pain management patient information videos

Introduction to the Leeds Pain Team

Hello my name is Dr Ganesan Baranidharan i’m one of the pain consultants at Leeds Teaching Hospitals. You’re here today because the pain team has felt that you’re suitable for a spinal implant to manage your chronic pain.

Leeds teaching hospitals is a tertiary care centre we cater to patients within Leeds for pain management and we also look after patients outside Yorkshire and outside leads for tertiary. Cat spinal cord stimulation is one of the tertiary care services that we provide at Leeds Teaching Hospitals.

Leeds teaching hospital is a cluster of hospitals which is located at different parts of Leeds such as leech general infirmary in the city centre. St James’s Hospital Wharfedale, Leeds Dental Institute, the Cancer Centre within this and St James’s hospital and Chapel Allerton Hospital.

Pain services are currently located at four sites which includes Leeds General Infirmary, St James’s hospital and the cancer institute cancer services within the saint James Hospital, Wharfedale general hospital and Seacroft hospital.

You might be expected to visit these centres for your specific pathway and we can’t move to different hospitals depending upon your accessibility. If you are asked to come to a certain hospital that means there are services located in that particular hospital and you have to make your way for that appointment.

Leeds pain service consists of pain doctors and there are five of us at present we have specialist nurses who look after both the clinical side and the research side.

We have administrative team who actually manages the whole pathway by offering you the appointment at the appropriate time. We have our pharmacists our psychologists and our physiotherapists who work within our team the aim of this presentation is for you to understand what spinal cord stimulation is.

Is this the right treatment for you and to understand the various things that goes with the spinal cord stimulation. This also helps you because you can watch it with your family so it could be made as a decision together for the suitability of this procedure.

The video is divided into five sections and this flows in the way of how your pathway is going to be initial introduction followed by pre-operation details and what happens in the operation period and what happens immediately after the operation and the long term changes so we’ve split them into five groups you should be able to dip in and dip out of each individual sections.

As you need at any time you want but the first time we would prefer you to watch the whole video as much as possible so you can get a clear understanding of what commitment we expect from yourself to go through this treatment pathway.

Types of Pain

My name is Dr Andy Whelan and I’m a pain consultant working for Leeds Teaching Hospitals I’d like to discuss the different types of pain we can experience and the reasons why spinal cord stimulators are implanted.

Pain usually exists to warn us of harm that is occurring to our bodies and is there to protect us. We call this type of pain acute pain and it can be felt when we stub our toe twist our ankle or break a bone this is the type of pain that usually disappears as the injury heals.

In some people this pain can continue for a prolonged period of time after the initial injury and this type of pain is called chronic pain and it can be more challenging to treat. Chronic pain can be of two different types the first is called nociceptive pain or non-nerve pain and it does not respond to spinal cord stimulation this pain describes the pain from physical damage or potential damage to the body and good examples of what no septic pain can feel like are pain from a sports injury a dental procedure or pain from arthritis.

The second type of pain is called neuropathic pain or nerve pain this is the type of pain that does respond well to spinal cord stimulation and this type of pain often occurs during sciatica shingles or in diabetes related pain neuropathic pain is more complex and is associated with an injury or a disease of the nerves that provide sensation it is therefore very different from noceptive pain in how it feels and how it develops.

People with neuropathic pain often describe it using words such as burning shooting stabbing and prickling light touch and gentle movement can feel very painful sometimes. Even things like clothes touching the skin can cause severe pain nice are the national institute for health and care excellence and provide guidance on which treatments have evidence to support their use in the NHS.

NICE have recommended spinal cord stimulation as a treatment option for adults with chronic pain of neuropathic origin who continue to experience chronic pain measuring at least five out of ten and have done so for at least six months despite conventional medical management.

In summary we have discussed that pain can be acute or chronic and it can fill no susceptible or non-nerve pain or neuropathic nerve pain we have explained that neuropathic nerve pain responds well to spinal cord stimulation and we have also covered the national guidance that spinal cord stimulators should be considered to treat moderate to severe chronic neuropathic pain.

Introduction to SCS Cancer Pain

Hello my name is Dr John Titterington i’m one of the pain consultants you just heard from my colleague about how there’s mechanical pain and nerve pain and how nerve pain is something that’s well treated by spinal cord stimulation.

We also split patients into two groups by what caused the pain whether it’s cancer, cancer-related or non-cancer related. So what I’m going to speak about now is how to treat cancer pain with spinal cord stimulation so if you haven’t suffered from cancer then this section won’t be relevant to you.

What causes cancer-related pain clearly it’s important to differentiate between people who have active and ongoing cancer where unfortunately it might be a life limiting problem compared to patients who have had their cancer treated and when patients might expect to have a normal or near-normal life expectancy in patients who’ve got active cancer the pain is often caused by the cancer itself pressing on nerves whereas in patients who’ve had their cancer treated the pain is more often due to the actual treatment of the cancer.

So you may have had your surgery and been left with a nerve injury following this or you may have had chemotherapy or radiotherapy and been left with a neuropathy cancer pain can be either due to the cancer itself in active cancer.

Most commonly or from the treatment of your cancer what’s different about patients who’ve been affected by cancer patients who’ve got active cancer have got quite busy lives lots of appointments to get to they might be having chemotherapy or radiotherapy.

These are important life-saving treatments we need to fit in our pain relieving treatment around these treatments patients with cancer often have other things going on as well. They might have ongoing infections they may have blood clotting problems due to chemotherapy or they might have dvts or pes so they are relatively a more complicated group people with treated cancer things are much more routine. The treatment the cancer’s all been treated and hopefully cured or they’re in remission and we have a lot more time to to sort out.

Our pain treatments the main thing is whether they need or you will need surveillance in the future particularly mri scans let’s have a brief a few words about scans. Because scans are covered elsewhere in this video first thing to say is ct scans are completely safe. It’s just mri scans where there can be a problem there’s a whole range of spinal cord stimulators or types of spinal cord stimulator and if we know that you need mri scans then we will choose a system which is maximally compatible with mri scans.

Once you’ve had your spinach stimulator implanted is very important to let the radiographer know what type of smartphone stimulation you’ve got as they will have to adjust the type of scan that they do. Also in leads they’re a bit more experienced about scanning people with sparkle stimulators so if it is possible try to have your scan done in leads one final word about mri scans is that once we put a maximally compatible spinal cord stimulator in.

If there are technical problems with the spinal cord stimulator occasionally it means you can’t have an mri scan. So one of the most common questions I get is will having a spinal cord stimulator affect my cancer treatment and the truth is that we’ll do everything we can to minimize the effects of the spinal cord stimulator on your cancer treatments but it can affect affect it in some small ways.

First is if you’re planning to have or plan to have further radiotherapy then the battery of the spinal cord stimulator is a big metal box and that can block the radiation from the radiotherapy also the radiotherapy radiation can damage the battery so it’s important for us to put the battery far away from any potential radiotherapy sites.

Secondly chemotherapy is can be a problem chemotherapy doesn’t do anything for wound healing and we need to make sure that there’s a quite a good interval between your surgery and any planned chemotherapy.

If you’re concerned about any of these things then it’s important to discuss these with us or you can discuss it with your haematologist or oncologist and please let us know if there’s any concerns about this.

So in in summary spinal cord stimulation can be a really very effective treatment for cancer pain patients with active cancer quite a complex group and it does take a bit more liaison between ourselves and your oncology team to get things going.

We will try to get things done urgently and expedite your care patients who’ve had their cats are treated things are more routine but we do need to think about the need for any mri scans in the future.

In general I find spinal cord stimulation a very effective treatment for cancer pain patients can reduce the pain medications we can sleep better and can be happier following their spontaneous stimulator i wish you all the best with yours.

Medication

My name’s Lis and I’m the pharmacist that works as part of the chronic pain team. Here in Leeds I’m going to talk for a few minutes about medication and how it fits into managing long-term pain. I’m going to look at what to expect from a medicine the challenge of balancing benefits and side effects and a bit about how you can go about reducing your medication. Firstly what can you expect from a painkiller sounds like an obvious question really you’d like it to take away all your pain but real life experience shows that, that’s not actually what happens.

Most people with chronic pain are unlikely to find one or a combination of medicines that take the pain away totally. I’m guessing that that may be your experience too when researchers look at how well a painkiller works. Reducing pain by 30 percent is counted as a successful result this is the same as saying that your pain has reduced from 10 out of 10 to 7 out of 10. So if we look at this diagram it shows that even if the medicine is working well. There’s a strong chance that you will still be left with some pain.

So this helps to show that relying on a painkiller is the only way to manage your pain is probably not a helpful strategy. If you’re expecting your painkiller to take away all of your pain you’re very likely to be disappointed. Now that probably sounds really very negative and you might well be thinking well why bother.

With them painkillers can play a useful part in managing pain although they’re unlikely to make the pain stop totally they may ease the pain so that you’re able to do more. For example it may mean that you can do an activity that wouldn’t have seemed possible before you might be able to do something for longer without having to stop because of the pain or you may also be more comfortable at night time and sleep better and therefore you feel better the next day to manage whatever comes your way.

I think sometimes it will be more helpful to think of the medicines as pain reducers rather than painkillers the reason for taking a painkiller is to improve your quality of life so it’s also important to think about any negative effects the medicines cause what are the costs of taking it all medicines have side effects.

Some are obvious and others can be more subtle a good example of this is the memory loss that can happen with opioid medicines when you take them long term things like morphine oxycodone and fentanyl it happens gradually over time and people don’t often realize what’s happening but the effect on everyday life is significant forgetting appointments plans conversations things that you’ve promised you’ll do.

Which will impact on you how you do life and your relationships with the people around you. So it can actually end up reducing your quality of life there needs to be a balance between the benefits and the side effects of the medicine that works positively for you.

You may feel that you want to take less medication but aren’t sure where to start depending on how many medicines you’re taking or how long you’ve been taking them for it may be useful to discuss this with your doctor or pharmacist.

First my general advice would be only make one change at a time that way you’ve got a good idea if something changes why it might be and take a slow and steady approach.

Remember it’s probably taken you a long time to get to this point so it’s also reasonable to expect it would take time to change and expect a time of things. Being more unsettled depending on which drug you’re taking you may experience withdrawal symptoms these can take time to settle and can make pain feel worse.

You need to work with your body and give yourself time to adjust it’s helpful to remember that for most people pain can vary from day to day anyway so you need to let things settle before you can properly assess what pain is like at the new dose.

Opioid Reduction

Why reduce your opioid medicines you may have been asked to look at reducing the amount of opioid that you take you may feel yourself that you want to stop taking them or you may actually be quite happy with what you’re taking and aren’t totally sure what all the fuss is about.

I wanted just to give you a summary of the situation that might help you understand things better opioids are strong painkillers that have been in use for a long time.

They’re used a lot to help with short-term pain for example following on from an accident or an operation then as the body heals itself and the pain reduces the painkillers are stopped.

The other place they’re used a lot is in end-of-life care helping to make people as comfortable as possible in both these situations we’re not looking at long-term use and haven’t been studying the side effects about 20 years ago. Doctors began to question why we weren’t using these effective medicines for people who have long term pain and so for the last 15 to 20 years they’ve been more widely used as we’ve used them more we’ve learnt more about them and what happens if you take them day in day out year after year.

Unfortunately the picture that we’re seeing and we’re building up of them is not particularly good the first thing is that they tend not to stay effective for most people their experiences the the start the medicine works really well it reduces their pain and they’re able to do a lot more but over time this wears off so you go back to the doctor and the dose is increased and for a while it’s good again but then it wears off so you go back the dose gets increased and so on and so on and eventually you end up taking high doses of opioids but find you’re still experiencing high levels of pain so opioids don’t really live up to their promise.

The second thing is knowing more now about what side effects might happen when these medicines are taken longer term there’s a few things that we now know opioids can affect hormones within your body there are many different hormone systems that work to keep everything in check one set of hormones that we know are affected because there’s something we can measure easily are the sex hormones so for women you find that periods can stop and for men testosterone levels can drop leading to problems with sexual function.

We suspect that other hormone systems can be affected too for example your thyroid which keeps your metabolism in balance and also those involved in keeping bones healthy the next one is a weird idea but opioids can actually start to make pain worse.

I know that sounds wrong but they can make the more painful areas sensitive and make you experience pain in new areas we don’t really know why this happens or how but there have been enough cases to know that it does the bizarre thing is that the pain actually gets better by taking less painkillers this seems to happen more often in cases where people have been taking high doses.

For a long period of time opioids can lower mood too it’s not that they cause depression on their own but they can definitely drag me down lower than it might otherwise be they tend to cause a general lack of energy.

Opioids can have a big effect on what we call your cognitive function so that’s how your brain takes in information how it processes information and then how it stores it so taking in information often your concentration is affected.

People find that they can’t concentrate or focus on anything for long so doing activities like crosswords or knitting stop being enjoyable and the same thing for reading.

People find that they can’t actually remember what happened on the previous page and so by the time they finish the book it it’s not enjoyable anymore and the same thing for watching tv programs and films also the idea of being properly involved in what’s going on around you.

You’re in the room but you’re not actually really there and somebody described it as possibly like being on standby processing information people often describe their thinking as being slowed they’re not as sharp as they used to be someone has described it as like trying to walk through treacle another thing that can happen is difficulty finding the right word in a conversation.

You know what you want to say but it’s kind of it’s on the tip of your tongue and you can’t do it and the third one is storing information short-term memory tends to be affected and remembering conversations that you had five minutes ago and that you’re supposed to be at an appointment that you said that you’re going to do something for somebody all of these things on their own might sound quite small but are yet another thing that you have to manage on a daily basis and they all affect your quality of life the aim of any type of pain intervention should be to improve your overall quality of life.

We’re looking to help you not just have a lower level of pain but to be able to do more of the things that make life worthwhile so that means for medicines we need to look at not just the benefits that they have but also at the side effects that they have too.

What are the costs of that benefit and how does that stack up for you opioids often offer the promise of doing great things for you but actually end up rubbing you of your quality of life we’ve worked with lots of people who started off taking really high doses of opioids and eventually are taking less but they feel that they’re in a much better place they still have pain.

But as the amount of medicine that they’re taking drops their quality of life has actually increased so how would you go about reducing an opioid medicine there isn’t really one correct way to do this it’s important to think about doing it in a way that feels manageable for you now.

It will depend a little bit on what medicine you’re taking the size of tablet and patch that it comes in you want to aim for a slow and steady reduction maybe a small drop every two to four weeks remember it’s probably taken a long time to get to the point where you are so it would seem reasonable to expect it to take time to change.

It it can be helpful to have the support of a healthcare professional a your GP or a pharmacist or a specialist nurse while you’re doing this process the other thing would be to expect the possibly getting some withdrawal withdrawal is something that happens when you stop taking an opioid it’s a physiological reaction from your body that you cannot control it’s not a sign that you’re addicted or that your body can’t manage without the drug.

I sometimes think of it as a little bit like your body having a tantrum your body has been used to having the opioid and it likes it if you stop or take some of it away it tends to let you know I don’t know if you’ve ever had the experience of taking a toy away from a toddler when they’re in the middle of playing with it usually all hell breaks loose for a few minutes and then after a bit they give up and move on to something else.

Your body tends to be a bit the same the withdrawal process can be intense and usually peaks around three to five days in and can take up to about 14 days to settle fully a really unhelpful thing is that often pain can feel worse as part of the withdrawal so the obvious thing is to think oh my goodness my pain is so much worse at this dose I must need that five milligrams but actually that’s not true.

You need to get through the withdrawal phase and let things settle and then you can properly see what your pain will be like at the lower dose this is the reason why we tend to suggest making changes every two to four weeks so that your body has time to adjust and then you can genuinely see what your pain is like at each dose level.

It can be helpful to think ahead about how you might manage some of the withdrawal symptoms and possibly talking to the friends and family around you really the question that you’re trying to answer is do I still need this medicine if so how much do I really need where’s the tipping point for me you.

Opioid reduction: Lisa’s story

How was it when you weren’t taking medication? it got to a point I was basically sipping morphine from a bottle and it still didn’t touch the pain I was in I didn’t measure it out anymore. I just drank it as it came and then the doctor would increase the fentanyl so I would need less morphine and then the fentanyl wasn’t enough so I’d need more morphine.

It was just back and forth like that for a good few years I practically slept through a good few years I practically slept for the full five years that i was on it I had no quality of life at all I had no energy I had no interest in anything I had no motivation for anything and the worst about it was it wasn’t doing anything for my pain relief.

I tolerated the dose when it went up it would feel worse physically. It wasn’t doing anything for my pain really ultimately it was a vicious circle what was the trigger for reducing your opioids? My son. 5 years of dealing with that and everyday it was like a little piece of me got taken away.

So there was another thing I couldn’t do another activity. As he got older he wanted to do things go places and all his friends were doing these things and I couldn’t I met my husband at this point and we wanted to get married and there was no way in this world that I was starting my married life in that state because I wanted a family for Logan There was no chance I was starting my married life in that state I wanted a family for Logan.

There was no point in giving him a family if it was going to be as dysfunctional as it had been when we were on our own how did you find it coming of opiates? I always knew it was going to be hard I didn’t know how hard that was a shock to the system in a lot of ways. I was very open to trying and I did expect it to take a long long time once i was off them there were more good than bad days.

It was the worst thing I had to go through in a lot of ways but the best thing. There were more good than bad days where as before it was normally all bad days so it was the worst thing I had to go through in a lot of ways but the best thing i’ve done but it had the most amazing outcome when I got off them because it started to feel like me I think I started coming off fentanyl in the April.

By December I was off everything, I got off 36 tablets a day in about 6 months i would say it was a good 6 months to get there and it was a good 6 months again before I started feeling back to normal but everyday I felt a bit better everyday I was encouraged to stay off it and look at an alternative because I think I felt so awful in myself and ill the pain felt more manageable what difference has it made to you? I think its because I can be a mum again. All these things taken away for me.

I can take Logan to his karate classes I can take his to school everything taken for granted I can become a good mum and one he has deserved for all these years but out of everything that is the biggest thing that has come from it all I’m now sleeping at night time and only at night time I don’t get a lot of sleep because of the pain and maybe that’s just me but I sleep at the right time of the day what would you say to others taking similar medications?

Get off it as soon as possibly you can because ultimately it’s not going to help you. there are other treatments that can help you this won’t and the longer you take it the harder it’s going to be it is difficult and one of the hardest things you ever do. yes you will still have pain but you will cope with it in a different way many thanks to Lisa sharing her story

Introduction Psychology and Activity

Hello my name is Alex Puchala and I’m a clinical psychologist today I’m going to tell you how we think about long-term pain and psychology and what is it that we offer as a part of the leads pain service pain is a powerful biological mechanism designed to protect us there are many different types of pain.

Like nerve pain mechanical pain pain comes with a lot of tension in our body when muscles want to protect the sight that is hurting pain is also by design grabbing our attention making it very difficult to focus on anything else and when pain is severe we cannot even engage in a simple conversation.

Pain is by design extremely unpleasant we share the experience of pain with animals but as human beings we developed extra things on top of that experience most people that we work with comment about sadness and suffering that comes with pain a very common experience is constant worrying worrying even about things that we typically look forward to like family holidays or wedding people might worry months or years in advance on how they’ll be able to get there whether they’ll be able to sit through it or enjoy it long term pain also comes with a lot of frustration the diagnostic processes and waiting lists can make people feel very frustrated.

Also the ignorance or lack of knowledge of friends family or healthcare professionals can be extremely frustrating it is normal for people living with long-term pain to experience a lot of anger it’s often anger at other people and they lack of support but sometimes that anger is internalized and people start to hate themselves and hate the life that they’re living and hate what their life became it’s normal to experience a lot of fear when it comes to long-term pain fear of certain conversations or meeting people being asked how are you busy places or activities that can trigger pain.

It’s also normal to experience avoidance of things and activities that might trigger pain what also people tell us about is a grief they experience over their life that they feel have lost or the part of self that they feel they have lost and also long term pain can lead to isolation and a lot of grief and guilt and shame over the things that the person is no longer able to do.

What people tell us often is about the experience of burden managing long-term pain is a burden for the person because there’s so many different things that the person have to look after or do or plan or problem solve managing long term pain is a burden for the family but what we often hear is after a while of living with long term pain the person themselves is starting to feel like a burden long-term pain can lead to isolation and loneliness and withdrawal from activities previously enjoyed and there is many other experiences that people share with us who live with long-term pain.

 So you see what has been developed as this really protective and helpful biological mechanism when it comes to long-term pain sometimes called chronic pain there is no protective function and there is no helpful function anymore it just becomes extremely difficult to manage and becomes a massive and complex difficulty for the person and people around them so what we know from scientific research and also from my experiences working with people of long term pain is that our mood how we think about pain.

How we understand it and knowledge about pain and the environment that we are in if these factors are negative they can put up the volume on pain the opposite is also true if we feel supported cared for and safe that can help us to manage the pain better in the leads pain service we use the model of holistic pain approach. 

What we mean by that is that we look at not only the person’s medical history but also on their social support on their beliefs on their value system what’s important to them and we take all of that into consideration when thinking about the best way to help and support the person one way of explaining what a holistic pain management is might be a use of a metaphor that we came up with in Leeds called the Leeds chair model so the lead chair model is a metaphor to explain what a good long-term pain management should look like imagine a really well-constructed chair a very well-designed chair that is very comfortable for you to sit in so let’s start with the back of the chair the back of the chair is all of the different treatments and investigations that you might have tried out to help you manage your pain better.

For majority of people that we work with it starts with trying different types of medication or injections another thing that people often use might be smaller but not less important it’s use of a hot water bottle massage or warm baths when you’re listening to this video one of the options that you and your pain team are considering is the use of spinal cord stimulator so it’s good to have that really well designed back of the chair but no matter how much padding goes into the back of the chair the most important thing about a comfortable and stable chair is the base of the chair so what do we understand by a good base of the chair in the pain management mode.

The first leg is diet what we eat how we eat how often we eat the frequency of our meals and how we hydrate our body is extremely important not just for our physical health and pain but also for our mental health another very important part of the chair model is sleep hygiene on purpose we didn’t just title it sleep because sleep for majority of people living with long term pain will be of low quality because pain can make it not only difficult to fall asleep but pain can wake people up and make it extremely difficult to fall back into sleep so what is the sleep hygiene sleep hygiene are all of the different strategies and things we can do throughout the day on the evening and during the night that can help us to get a better quality of sleep.

There is plenty resources about sleep hygiene and other strategies on our website the third leg of the chair is activity finding the right level of activity finding an exercise form a gentle form of exercise it’s essential to prevent pain from getting worse and to also give people a good quality of life the fourth lack of the chair is a little bit of a mix it includes and recognizes the importance of social interaction and social support but also the importance of things like having a hobby or being able to relax so imagine that one of those legs or maybe more of those legs of the chair are unstable of crumbly no matter how much we invest in the back of the chair you’re not going to be able to sit comfortably so remember one of the legs of the chair was the activity so we have an excellent team of physiotherapists who specialize in chronic pain and it’s very important that you think about optimizing your level of activity before.

Considering a spinal cord stimulator for best results so if you have concerns that maybe your level of activity is not what you would like it to be please ask your team for a referral to our pain physiotherapists to find out whether there is anything we can do to help you get a better level of activity.

I’m going to briefly now tell you about what is it that we do and offer in Leeds pain service from psychology we offer a living with pain group as name suggests it’s a group for people living with long term pain we also offer individual sessions with psychologists we also have an excellent opioid reduction clinic run jointly with our pharmacology and psychology and we also offer a psychological assessment of suitability for spinal cord stimulators.

If this short talk made you curious about psychology and how can it can help you to live the best life you can with your pain please go into our website the link will be in the description and see we’ve got breadth of resources about the sleep hygiene and other strategies that can help you live a better life with pain also if you’re interested in how psychology can help you better prepare for the spinal cord stimulator you can read about what we offer there thank you for your attention.

SCS Nursing Service

My name’s Jenny I’m the team leader for the clinical nurse specialist. I’m just going to tell you a little bit more about our service with regards to spinal cord stimulators. We are a service of nurse specialist clinical support worker and we work closely within our multi-disciplinary team. We will provide you care and support before you have your spinal cord stimulator implanted and then in the follow-up period afterwards we will provide you some information education about spinal cord stimulators and do an individualized assessment following an implant of a spinal cord stimulator.

We will then individualize your care as to when you need follow-up this may include follow-ups such as wound reviews reprogramming of your spinal cord stimulators which we do we will do in face-to-face clinics and then we may also give you some follow-up via telephone and video calls as well if you are doing well with your spinal cord stimulator.

It may be that we don’t need to see you in face-to-face clinics and that you can contact us if you have any problems at all. We also provide rapid access clinics for these occasions when you can contact us on the telephone and we will arrange to see you face to face where appropriate. We have a telephone service where you can ring us and leave us a message so if you need anything at all this service is available Monday to Friday 8 till 4. If we are unable to answer the phone please leave us a message with your name date of birth or NHS number and a short message of what you need us for we do try to get back to you as soon as possible.

However due to clinical commitments it may be that we cannot get back to you immediately if you have any more urgent problems or concerns and it’s important that you get seen then please do contact for other medical attention. We also have an email address and we advise you to look at our website for more information.

Research

Hello my name is Tracy Crowther and I’m a clinical research nurse I work in the pain and interventional neuromodulation research group or the pain research group as we often call ourselves. We’re a team of consultants research nurses research fellows and clinical trials assistants we’re all working together to try and find the best treatments to treat your chronic pain.

We are interested in improving your experience of chronic pain treatments one way that we can do this is by inviting you to take part in our clinical trials. Most of the clinical trials that we study in our pain research group are investigating medical devices similar to the spinal cord stimulator you have been invited to find out more about the aim of these studies is to improve our understanding of chronic pain conditions and to see if we can help find better treatments to treat your pain.

If you’re referred to the pain management service in Leeds you may be offered the opportunity to take part in one of our clinical trials this is totally voluntary you don’t need to do this if you don’t feel comfortable doing so.

But if you do decide you’d like to take part it may involve you needing to complete a few extra questionnaires and maybe attend a few extra visits in addition to the standard care pathway visits you’ll be asked to come and see us for you may not want to take part in one of our clinical trials but may still be interested in research.

If that’s the case please let us know because we have a patient and public involvement group that you could be a member of the group that we have review new studies that we’re designing and read all the paperwork and give us feedback on whether or not we are designing the studies in a way in which patients will be happy to take part.

If you’d like to get involved in this please let us know we’re always looking for volunteers.

SCS Pathway

My name’s Jenny I’m the team leader for the clinical nurse specialists. I’m just going to tell you a little bit more about our spinal cord stimulator pathway the pathway starts with an appointment with your consultant that you may have already had. This will be where your consultant assesses you and tells you a little bit more about spinal cord stimulators following that if they feel you’re appropriate for a spinal cord stimulator they will refer you for this video session where you will find out more about spinal cord stimulators.

You will then have an individualized assessment with the nurse specialists this may be either face-to-face in clinic or this may be via a video link and we will let you know about that we also within our service have psychologists physiotherapists and pharmacists they all form part of our pathway and you may be referred to any of these services it is really important that you attend these appointments if you are giving them after you have had the nurse assessment you will then be referred to.

Our mdt meeting this is a multi-disciplinary team meeting at this meeting your care will be discussed as whether you’re appropriate for a spinal cord stimulator following this if you are not appropriate for a spinal cord stimulator and your consultant will discuss this further with you and if you are appropriate for a spinal cord stimulator.

You will be added to the waiting list for this to be done in theatres this may be a trial or this may be a full implant and this will be discussed with yourself and discussed at the mdt meeting.

After you have had the implant done your follow-up will be as previously discussed with the nurse specialists and your consultant the process from referral to the implant of a spinal cord stimulator can take some time and a number of months but it is important that you attend all aspects of the pathway we want to make the service as fair as possible to everybody and therefore we are unable to expedite and patients appointments and treatment but we will implant you as soon as we possibly can.

NNR Pre Op

Hello my name is Dr Ganesan Baranidharan I’m a paint consultant at Leeds Teaching Hospitals registry is an important part of collecting data you might have heard about breast implant, hernia repair related, mesh problems.

The government is now focused on keeping a central registry of all implantable devices so if there is any problems in the future these could be brought back and the patients could be contacted appropriately so what is national neuromodulation registry.

This is a registry specifically designed for collecting data on patients and the devices that had been implanted in each of these patients you will be asked to take part in this data collection and this is purely for safety reasons as if there is any problems with these devices in the future it will be easy for us to contact you and do the appropriate management from our end.

We would be able to collect outcome data and also help other people in the future on the appropriate selection of devices and to improve the patient outcomes.

So once you sign this we would collect your demographic data such as your patient details, your email address your mobile number. We will then add details about the implantation into this you will be asked to give certain selected questions to be done before and you would get an automated email at about six months time where you would fill these in and this could be emails or text messages we will also hopefully have a patient application which meant you could possibly do all this using your smartphone or your iPad.

This way we improve the improve the safety of the device in summary we hope you would consent for having your data input into the national registry which is a key information that we collect and we would kindly ask you to fill the outcome data before and after to help us offer this therapy appropriately and effectively for patients in the future also.

What is a spinal cord stimulator?

Hello my name is Craig Montgomery I’m a pain management consultant at Leeds teaching hospitals.

In this video I’m going to talk about what is spinal cord stimulation. So a spinal cord stimulator is a medical device which is surgically implanted and it’s used to treat neuropathic or nerve pain. It consists of implantable pulse generator also known as a battery an electrode and a patient controller.

So how does a spinal cord stimulator work it works through a form of neuromodulation. This is where a stimulus is applied to a target area which causes a change in nerve activity with spinal cord stimulators.

This is the application of electrical stimuli to the epidural space which runs next to the spinal cord causing a change in pain signals transmitted to the brain causing a reduction in the perception of pain as you can see in the diagram we have a number of different points labelled explaining how a spinal cord stimulator work.

The first relates to pain signals which are transmitted from the painful area into the spinal cord the second is the implantable pulse generator or battery which generates the electrical stimuli which is transmitted to 0.3 the electrode which is located in the epidural space adjacent to the spinal cord point four relates to the pain signals which are altered after the application of electricity and these are then transmitted up to the brain hopefully reducing the perception of pain.

So when considering spinal cord stimulation we need to think about what is success the literature refers to success as being greater than a 50 reduction in the severity of pain which would mean going from a pain score of 10 to 5 or less.

But when considering patients we need to think a little bit more holistically we need to think about improvement in function improvement and quality of life reduction in medication and improvement in overall well-being so when considering success rates in spinal cord stimulation we quote the figure or approximately 70 but the literature can vary and be anything from 50 to 80.

What this means is that for every 10 patients having a spinal cord stimulator inserted seven will get improvement in their pain scores and out of that seven some will get significant reduction in their pain and others will get a modest reduction and the final three will get no improvement in pain whatsoever.

So what are the problems with statistics in pain pain is subjective it is what patients say it is there are multiple different causes of pain there are other factors which can affect people’s perception of pain such as general health medication usage.

Psychological well-being and patient expectations so why is this important it allows patients the opportunity to make informed choices balance risks against potential benefits it allows people the chance to maximize their chances of success and also prepare for potential failure thank you for watching.

SCS Equipment

So my name’s Jenny I’m the team leader for the clinical nurse specialist and I’m going to talk through and show you some of the equipment involved with spinal cord stimulators.

So first of all we’ve already discussed about that you may or may not have a trial if you do have a trial of a spinal cord stimulator you will have the lead that goes internally into your back already discussed and then that will be connected to an external battery or device the external batteries.

Examples are here and here so as the lead comes out of your back you will potentially have one connected to a belt so you have the belt around your tummy and this will just sit in the belt another example is here and this will just sit underneath a dressing so the next bit of equipment is a remote control your spinal cord simulator will be programmed by either one of the reps from the company or one of the clinical nurse specialists.

You will then have a remote control with that remote control you will be able to switch your simulator on and off to switch it up and down and to change between programs.

We’ll show you in more detail of how to use your remote control these are just some examples of some of the remote controls we have and the type of spinal cord stimulator you have will depend on which remote control you have some of the remote controls use Bluetooth technology and in order to do that you will switch the remote control on and then you will be able to connect that to your internal battery just by holding it relatively close to your battery.

Other examples of the remote controls you will have to hold it relatively close to your battery to switch it on and then you will be able to control it by switching it up and down and on and off depending on whether your spinal cord stimulator is rechargeable or not will depend on the type of stimulator that you’ve got.

We will discuss that with you in more detail if you have a rechargeable spinal cord stimulator that will mean effectively you have to recharge your internal battery again depending on the type of stimulator will depend on how often you have to do that.

That will range between once every day or once every few days or a week examples of recharges some of them will look like this will need to be plugged in via an adapter to the wall you then unplug it from the wall the paddle goes over your internal battery and you will switch the charger on and charge yourself other types of stimulators will have a device that gets plugged in the charger goes in that gets charged up it then comes out and sits in a belt and then charges your internal battery you.

SCS Procedure and what to expect

Hello my name is Dr Ganesan Baranidharan i’m a pain consultant at Leeds Teaching Hospital in this video I will be explaining the procedure of spinal cord stimulation as a patient what you can expect on the day of operation plus the difference between what we mean by a trial stimulation and full implantation there are some graphic pictures of the procedure being done.

If you are a bit squeamish you might want to try and skip those bits first is the settings as you walk into the theatre the theatre environment has plenty of people around as there will be a staff nurse who would have to scrub up to assist with the operation to the surgeons there will be an extra person to bring things

While the operation goes on an anaesthetist and an anaesthetist helper and possibly one more person with the surgeon so you are expected to see quite a few people inside a theta environment these cases are done under local anaesthesia and sedation so we will walk you into the theatre and get you to climb on to the table as you can see the table is a very narrow table and will help you position yourself in a comfortable place as you will have to be on this position for at least an hour or so.

There are some equipment’s around the theta that you’d look at like anaesthetic machines and various equipment’s that we use for the operation you’re more than welcome to ask us any questions because this is not a very serious place and if you come in and you have any doubts about things around the theatre you’re more than welcome to ask a question we would explain what that is for this is the trial video one this animation shows how the procedure is being done you’re on your belly and a needle is placed from your back under local anaesthetic to a specific pace inside your spine called as an epidural space

You might have heard about epidurals when women give birth to babies for pain relief we then pass an electric wire through the needle to the desired level in the spinal cord at this point we might even ask you to tell what you feel when we stimulate the spinal cord once this is done then this is either tunnelled out to be connected to a battery externally or it will be connected to a battery internally this is trial video 2.

This is a live demonstration of a patient undergoing the procedure as you can see the needle has been passed with a direct x-ray guidance and once the needle is in the appropriate place we then pass an electric wire to try and get to the appropriate level in your spine

At this point as you can see these wires can move either to the right side or the left side and if it goes too much to the side it can touch the nerves that are going down to your legs and to your groin if this happens this can cause a mild nerve injury which will recover but it’s important for us not to do that it is important for you to be awake during the procedure for this reason and also some of the systems we use we would like to put the electricity through and ask you what you feel what we’re expecting to hear from you is a nice pleasant tingling sensation and we are expecting to map this on your painful area

The more of your painful area we cover the better the outcome can be so hence it is important for us to keep you awake during the procedure once these wires are placed and if you’re having a trial implantation you don’t have any further surgery the wires come out of your back and we either stitch them as shown in the picture or we use a special device to hold it in place sometimes these can be a little bit uncomfortable during the trial period

Which can last anywhere between 5 days to 15 days and sometimes up to 30 days unfortunately you have to put up with this and ignore the the discomfort that you get from either the wires or the stitch that we put on but concentrate on your pain and how the stimulation has changed your pain a full implantation means that we are placing the whole system in place which includes the wires the wires being fixed in your back and connected to a battery you might have had a trial before or you might have been chosen to have a full implant depending on the mdt discussion

So while we do the full implantation the wires are placed similar to we’ve shown in the trial implantation we then open the back by about two one to two inches and then we anchor this to a fascia or a plane where it does not move this is then connected to a battery which would be placed either in your buttock your chest wall or in your abdomen

The position of your battery will be discussed by the doctor with yourself and the best position will be chosen majority of our patients have the implant either in the chest wall or in the buttock abdomen is extremely rare the wires come in different sizes and shapes as you have seen the video was very much focused on the percutaneous electrode which is placing an electrode without opening up your back very

Occasionally I think in Leeds we probably would say four to five out of 100 patients might need what we call as a surgical paddle lead these are much bigger bigger as shown in the picture and these will be placed under direct vision by opening up your spine and going to the area where we need to place these wires these are done by our neurosurgical colleagues and you will have a consultation with a neurosurgeon to talk through the pros and cons and the complications associated before you undergo this procedure

But you will be looked after under the pain services for the rest of the appointment as discussed in our video sessions things to take away from this video you’ve seen the setup you you know what to expect this is not a simple procedure as people think it’s just a tense machine this is actually a surgical procedure which carries risks and possible complications which will be discussed further down and if you have any questions at all make sure that you write it down and ask the nurses when you have your face to face or video consultation following this information session

Complications and MRI Considerations

Hello my name is Dr Sheila Black i’m one of the consultants in Leeds Teaching Hospitals and i’m going to be talking to you today about the complications which can happen after your spinal cord stimulator implant and some considerations regarding mri scanning.

All medical procedures carry some risk of complications and these need to be weighed up against the potential benefits in your individual situation this is an individual decision and i’m going to run through some of the considerations which you might want to consider whilst contemplating this type of therapy.

The things you might want to consider might include your personal situation your expectations of how this treatment is going to benefit you how you would cope if this treatment wasn’t going to fulfil your expectations and give you adequate pain relief or if you were to encounter any of the complications which i’m going to explain to you the limitations in terms of what you can and can’t do in the weeks following the spinal cord stimulator implant and your commitment to moving forward with this type of therapy.

So serious complications after spinal cord stimulator implant are rare most of these complications are very manageable and it’s very rarely that you will be left in a worse position after a spinal cord stimulator implant than you would have been before.

Some of these complications can occur early after the implant and some can be later the early complications might include headache bleeding wound infection nerve injury or neurological infection or allergy to drugs or reaction to the anesthesia regarding headache this can occur when the epidural needle moves forward into the spinal space and makes a hole in what’s called the juror and fluid comes out through that hole which results in a headache this headache can be minor or can be very severe and usually lasts between one to two weeks.

This is usually manageable with painkillers and will pass in time bleeding and bruising can occur following spinal cord stimulator implant normally this is superficial just under the wound but can be more serious deep within the spine it’s very rare for this to require further surgery but if this was was to occur you should report this to the pain team and this will be kept under review.

Wound infection also can occur after spinal cord stimulator implant there are some medical conditions such as diabetes which might make this more likely to occur we try to minimize the risk of this by administering antiseptic wash and nasal cream before you come into hospital antibiotics administered at the time of the implant strict asepsis to make the actual operation clean and strict wound care instructions which will be provided to you at the time if wound infection was to occur this is usually superficial and will normally respond to antibiotics.

More deep-seated infection can be more difficult to treat with antibiotics and it may require the spinal cord stimulator implant to be removed to avoid more serious infections such as meningitis neurological complications are extremely rare after spinal cord stimulator implant these might include numbness weakness or even paralysis.

It’s extremely important if you were to experience any signs of weakness or numbness in your limbs or loss of control of bladder or bowel function that you immediately seek medical advice for this to be investigated allergic reactions can occur to drugs most usually antibiotics and this can be a minor reaction or a severe reaction late complications can include battery site pain movement or breakage of the internal leads resulting in loss of pain relief allergy or reaction to the implant material and need for revision surgery.

Battery sight pain is the most common late complication the choice of battery site is individually selected based on your personal preference and areas of pain uncommonly you may need to come back for revision surgery to either move the position of the battery or remove the implant entirely the internal leads are held in place by special plastic anchors and sutures occasionally the leads may either move and slip or break at the point of the anchor and this would commonly result in loss of pain relief,

This again might require coming back for revision surgery to replace the lead hypersensitivity or reaction to the implant material can occur even though this is specially designed for internal use it is very rare and it’s impossible to predict it occurring or to diagnose it it can often resemble infection it may require removal of the whole implant if the reaction was to persist loss of pain relief can occur even after the spinal cord stimulator has been working well sometimes reprogramming might help although if it is a result of lead breakage or the battery running flat then these can be fixed and finally considerations regarding having an mri scan.

Once the spinal cord stimulator is implanted it’s perfectly safe for you to have x-rays ct scans and ultrasound scans with your spinal cord stimulator implant but mri scanning needs more careful consideration due to the powerful magnet which is used within the scan older spinal cord stimulators may not be safe within any mri scan patients with newer spinal cord stimulators might possibly be able to have an mri scan depending on the system which is involved and this will be decided by your responsible consultant it’s important to tell people about the presence of a spinal cord stimulator for them to either make special arrangements regarding the mri scan or undertake alternative imaging thank you for listening

Information before your surgery date

Hello my name is Dr Ganesan Baranidharan i’m one of the pain consultants at Leeds teaching hospitals once you’ve been through the ses pathway and your case has been discussed in an mdt.

You will get a letter through the post to say that you’ve been placed on the waiting list when the date for surgery is decided for you you will receive either a letter or a telephone call to check if this date suits you as you will have to make arrangements for the operation you will then receive further appointments and these appointments would be to have a final check with the consultant and also pre-op assessment from the anaesthetic team

The surgical booking letter will contain clearly your date your name your NHS number the consultant that you are going to be operated on by and the fasting instructions it is very important to follow the fasting instructions at this point if you are on any blood thinning medications or you suffer from diabetes you will have to follow the instruction given by the pre-assessment team final check

You will either have a face-to-face consultation or a telephone consultation with your consultant this will give you an ample opportunity to ask questions and to give a verbal consent at this point that you’re happy to go ahead with the treatment as planned pre-assessment will be done either over telephone or in person face-to-face depending upon your medical condition.

You will have further tests in the lines of ecg blood tests they will also discuss the pros and cons of aesthetic remember you’re not going to sleep you’re going to have a mild sedation with local aesthetic for the procedure you will also be able to speak to an anaesthetist on the day of the operation to go through your concerns from the anaesthesia you will be given some drugs for decolonization and this is important you will be asked to use this to shower five days before the operation there are occasions that five days might not be possible but the key is the moment your date is known you should start using this decolonization wash.

You will also be given some ointments to be applied inside your nose this is to prevent infection during the operation once all of these has been performed you would know which hospital you’re going to come and what time you are expected to come unfortunately there might be some delay from coming into the hospital to when you would be inside the operating room and there is nothing we can do to change as we operate from morning to evening you have to wait for your turn and that means there might be a little delay so bring something to read or watch on the day of the admission

Make sure that you’re in the right hospital at the right time you might have a long wait before your turn is up for operation when you come in you will check in in the front desk you’ll be given identification band and you’ll be asked to get changed to the operating clones

Once your time is up they will get you into the theatre you’ll be introduced to the theta team and we’ll do all the checks again before we start the operation you will have an anaesthetic review on the day and if you have any concerns about sedation or you want to ask any further questions about the anaesthetic implications you will be able to ask this question without any status if you have any concerns about the admission pre-assessment you can always ring our admin team and they will advise you appropriately

Post Op Care

Hello my name is Tracey Crowther and i’m one of the nurses in the Leeds pain team i’m going to talk to you about your post-operative care following the insertion of your spinal cord stimulator please listen closely as this will help you recover in a timely and safe manner you are probably wondering how soon you’ll be able to get up and about you can start to mobilize when you get back to the ward after the scs has been implanted.

It’s going to be painful yes but you’ll be able to have some pain relief if needed just ask the ward staff don’t over exert yourself don’t sit or stand for long periods of time but remember that gentle mobilization and normal daily activities will help healing and your general well-being for the first six weeks avoid heavy lifting bending twisting or raising your hands above your head always think about keeping your elbows below your shoulders.

You are understandably going to be concerned about the small surgical wounds that you have on discharge from your procedure you will be given advice regarding your sutures and the dressing you will need to book an appointment with either your gp or your practice nurse to have your wound checked at two weeks after your procedure if this cannot be done you will need to call the pain nurses here at Leeds we may ask you to send us pictures of your wound therefore please ensure you have the ability to do so these reviews are very important.

You will not be able to shower until the dressing is removed which will be after approximately three days following the operation once you can shower you can allow clean water to run over the wound and pat it dry but please do not scrub or pick it as tempting as that may be we also ask that you do not bathe swim or use a hot tub a sauna or a steam room for at least six weeks as with any department in the trust we are very keen to avoid any type of infection therefore we ask you to be vigilant and monitor for signs of infection

These may include redness on or around the wound excessive swelling increased pain or fluid or pus leakage if you develop a temperature or generally feel unwell then please contact the pain nurses on 013 seven 3922178 we can advise you at that point of what needs to be done if you are not available contact your gp or visit your local a e if you were to experience a new leg or arm weakness if you are unable to stand or walk

If you cannot lift your arms or if you experience new bladder or bowel incontinence then you should attend a e immediately if you have stopped medication before the surgery for example warfarin or clopidogrel then please ask when it can be restarted continue to take all of the medication we ask you not to alter your regular pain medication until things have settled down following the procedure.

In relation to driving you are able to be a passenger in a car immediately be careful about your battery and lead as the operation site may be tender

If you are having a trial of spinal cord stimulation which is usually approximately two weeks we stress you cannot drive during this period you should not drive a car for at least four weeks after a full implant as you need time to heal after four weeks when you can do an emergency stop make emergency maneuvers and operate all controls of your car you should be able to be good to go

Some stimulators cannot be switched on whilst driving please check with the pain team to see if this applies to you and your system speak to your insurers before you restart driving as they may have additional restrictions if you intend to drive a motorbike commercial or heavy goods vehicles then you will need to speak to the dvla all of our advice has been discussed with the dvla medical advisors

Here are some key points for you to remember please make sure you are familiar with your system before discharge and that you take all of it home with you please keep your equipment safe please charge your spinal cord stimulator as you have been instructed if applicable and check the battery levels using your patient handset remember to stay on the program you have been given until you are reviewed by the pain nurse at your six-week appointment

As long as this is comfortable if there are still any questions the pain team website has a list of frequently asked questions which you may find helpful if you still have any issues or concerns regarding your spinal cord stimulator or your equipment

Please call the pain nurses on 013-392-178 we work Monday through friday 8 a.m to 4 p.m we have an answer service on that number so if we are in clinic and cannot take your call leave us a message and we’ll get back to you we ask that you leave your name NHS number date of birth and a contact number along with a brief message please can we ask you speak clearly and slowly we will endeavour to reply to your call

Life After SCS

Hello my name is Julie Firth i’m a clinical research nurse with the Leeds pain service i would like to talk to you about life changes following the implant of a spinal cord stimulator system we hope that by implanting this spinal cord stimulator we will help to reduce your pain we also hope that by implanting this spinal cord stimulator you will be able to reduce your medication our hope is that the spinal cord stimulator system will give you your life back.

Spinal cord stimulators are a drug free form of pain relief they are not a cure individuals get different levels of pain relief and nobody is expected to get 100 pain relief like everyone else you will still get aches and pains you’ll also get flares up of your chronic pain but over time these will settle our hope is that the chronic pain will be reduced.

At your information session the nurses will have discussed charging of your spinal cord stimulator some systems need it some don’t you’ll be advised which system you will be having and whether it will need charging charging the rpg is difficult to begin with you’ll need considerable patience to learn how to do this

If you do have a system where the battery needs charging we ask you to do this regularly if the battery loses charge it can become damaged if you’re having difficulty getting the good connection and recharging the system again advise you that you can contact us you can also try charging in a different position

You could try using a cushion behind your back to hold the paddle in place you could try using the belt that is provided by the company you can even ask a friend to hold the paddle over the battery but most importantly don’t panic have patience with yourselves

It does come with practice you will get there and we’re always here to help traveling with a spinal cord stimulator system we ask that you always take your handset and recharge it if required with you if you’re flying please pack them in the hand luggage these cannot go in the hold they won’t be damaged going through the x-ray machine your spinal cord stimulator is safe to have turned on whilst flying

You will be provided with a identification card by the nursing team or by the company representatives at the security we need to show the identification card that we’ve been provided to the security personnel this will enable them to send you through the correct scanning system if they don’t have a system that is safe for your spinal cord stimulator system they will hand scan you if this isn’t available unfortunately they would send you through the normal scanners don’t panic what we advise you to do is once you’ve got through security use your handset to ensure that your stimulator is still turned on

The worst the x-ray machines can do when the scanners is turn the battery off we suggest at that time if it’s being turned off turn it back on when you get to the gate to board the plane again just check that it’s turned on obviously in duty-free and around the airport there are scanners for metal to ensure everybody’s safety

You can leave the system turned on for flying it’s not going to affect the airplane I also suggest that once you’ve gone through the arrival airport again check that your spinal cord stimulator is turned on and please remember to bring all your equipment back after six weeks following the implant of your spinal cord stimulator system we ask you to restart your normal activities such as the bending twisting and lifting we ask you to do this slowly and to build up your activity levels

This is because you’ll have had a period of inactivity and your muscles will need re-strengthening the implant is still settling into place and the wound sites are still healing we ask you to pace yourself if you do too much activity you will know about it you’ll get aches and pains you could also get swelling around the wound site that is near to your spine if you do have any swelling or pain over the room sites we suggest placing a cool pack or ice pack over them this should reduce the swelling and reduce the pain all the healing should have settled about six months.

What we mean by pacing is to build up your activity levels if professional athletes like footballers have had an injury they do not go straight back to playing a full match they build up they play for short periods and this is what we’re asking you to do to build up your activities originally getting back to what you were doing prior to the implant and we hope that following this you’ll be able to do more activities beyond what you were able to do previously there are some restrictions

Once you’ve had a spinal cord stimulator implanted one such as scuba diving the companies will advise you per their system but in general you’re asked not to dive below 90 feet which is approximately 27 meters we also ask that you don’t take up physical activities such as rugby ice hockey things when there is a chance of heavy physical contact mig welding can also cause problems for the system we ask you to stay a distance away from any mig welding

Maybe give bungee jumping a miss also roller coasters they’re not advised for people with back problems so therefore they might not be best if you’ve got a spinal cord stimulator implanted very little activity is actually restricted walking cycling running dancing and even after six months you can play golf if you’ve got any concerns any questions please don’t hesitate contact us that’s what we’re here for

Peripheral Nerve Stimulation (PNS) 

My name is Jenny Jennings and I’m one of the clinical nurse specialists in Leeds Teaching Hospitals Trust. This video is to provide you with information about peripheral nerve stimulators, including what a peripheral nerve stimulator is, the implant procedure, the risks and benefits, and post-operative care and follow-up. If you have been referred for a peripheral nerve stimulator in Leeds, it is really important that you watch this video and understand all the information. If you have any queries or concerns, our team can be contacted.

What is a peripheral nerve stimulator?

Peripheral nerve stimulation, or PNS, is the stimulation of peripheral nerves by tiny electrical impulses. PNS works by delivering low power electrical stimulation to the peripheral nerves, masking the sensation of pain. PNS systems can be easily and painlessly programmed to best manage your pain. It is used for chronic long-term neuropathic nerve pain. It is often used when other treatments such as medication, physiotherapy or injections haven’t worked. Although PNS may allow you to reduce some of your medications, it can still be used alongside them. It can be seen as a tool to allow you to revisit treatment options that may not have worked in the past, such as exercise or physiotherapy. It may reduce your pain but it will not take it away. In the event that you no longer require PNS, the device can be removed.

How does PNS work?

When you have pain, pain signals are transmitted via nerves to the spinal cord and then to your brain. PNS is the stimulation of the peripheral nerves that supply the painful area by tiny electrical impulses. The electrical impulses modulate or change these painful signals and, when they reach your brain, they are often perceived as less painful or potentially painless. The electrical impulses are delivered through an implanted lead, which is implanted near the peripheral nerve that supplies the painful area, sometimes at a site away from the pain. The lead is a flexible insulated wire which is powered by a battery which is usually worn externally. The stimulation can be adjusted in terms of strength and area of coverage via an external programming device by either a nurse from the pain team or a representative from the PNS company when you attend the clinic.

Will PNS work for me?

Unfortunately, peripheral nerve stimulators do not work for everyone. There is approximately a 60 to 80% chance of PNS providing you with an average of 50% reduction in your pain. This also means that there is around a 20 to 40% chance it will not work for you. PNS will only work for neuropathic nerve pain. Your consultant will have already assessed some or all of your pain as being neuropathic. However, some patients have mixed pain. By this we mean you may have some mechanical pain — for example, joint, muscular or arthritic pain — or pain from other conditions such as fibromyalgia. The PNS will not help with these types of pain.

Hello, my name is Dr Sheila Black. I’m a Pain Management Consultant in the Leeds Teaching Hospitals. This section of the video is to describe to you the practical aspects of the peripheral nerve stimulator implant. The peripheral nerve stimulator device is a 15 cm thin plastic wire which is placed under the skin next to the nerve. It has small metal strips which are powered by the battery which is worn outside the skin and these produce tiny tingling sensations which stop the pain which you are experiencing in that nerve.

This little plastic wire can be placed in a number of places in the body according to where your specific pain is. Common places include the arm, neck or shoulder, the ankle, knee, thigh, groin or in the back. The procedure itself usually takes around 30 to 45 minutes to complete. It is performed in an operating theatre and uses local anaesthetic to numb the skin. You will have a cannula in the back of the hand to be able to give you antibiotics and a small amount of sedation if needed. You will lie in a position which is appropriate to where the PNS implant is going to go. Sometimes you will lie on your back with your arm or leg extended. Other times you may have to lie on your front or on your side. Your surgeon will use an ultrasound scanner to scan the area where the nerve lies and the wire is placed alongside the nerve.

You will usually require three small cuts in the skin to pass the little wire under the skin. These cuts will have dissolvable sutures which means they will dissolve by themselves and they do not need to be removed by a nurse. These will be covered by three small dressings which should be kept clean and dry for 3 days. After 3 days the dressings can be removed and the area can be cleaned with water.

You should limit your activity for the first 6 weeks, particularly in the area of the body where the PNS is implanted. For example, if the implant is in your leg or ankle, you should avoid prolonged standing or walking for long periods. Your pain nurse will be able to give you more specific advice depending on where your PNS device is placed.

Complications from the PNS implant are rare. Usually there will be some bruising and swelling which will settle quickly. Sometimes the wire can irritate the nerve it is next to, but again, this should settle once the therapy begins to take effect. Unusual complications like infection may require antibiotics, and as a last resort may require the PNS device to be removed. If it is causing you any problems, the device can be removed by a simple procedure to open the small cuts and simply take out the small wire.

Hello, my name is Holly Watson and I’m one of the clinical nurse specialists in the Chronic Pain Service. As already discussed in this video, peripheral nerve stimulators stimulate your peripheral nerves with the aim to help reduce your pain. In order to be able to do this, there are different components to the system that will now be discussed.

It is important that you understand that the individual components may depend on the type of pain you have, where the pain is, and which type of stimulator you’re having. So please ensure that you discuss this in more detail with your pain consultant, clinical nurse specialist or the company representative, and be aware that the examples given in this video may not be the exact ones for you individually.

The lead is implanted internally under the skin, and then there are usually external devices that need to be worn in order for the stimulator to work. It is really important that you understand this and how this may look or impact you day-to-day in order to decide if this is something that you would like to proceed with. Very occasionally, a peripheral nerve stimulator will have an internal battery implanted under the skin, but if this is the case, it will be discussed with you further.

If you are having a stimulator involving an external wearable device, depending on where your lead will be placed will depend on where the external wearable device will be worn. This may involve a strap that goes around your leg or arm, for example, or it may fit into an item of clothing, for example, a vest over your back. The representative from the company or your clinical nurse specialist will be able to explain this in more detail to you, and it may be that you need to try on some different wearable devices in the initial postoperative period to see which suits you best.

Dependent on the program you have and how much power it uses will depend on how often you need to change the external device. The representative and clinical nurse specialist will be able to explain this to you in more detail, and how to change and recharge your external devices.

Post-operative care and advice:

After the procedure, a company representative may visit you on the ward, but more often the stimulator is not programmed on the day of the implant and an appointment will be arranged with you to have your stimulator programmed and switched on at a later date. You are likely to experience some pain or discomfort around the wounds for at least a few days and sometimes a few weeks after your procedure. It is really important that you check your wounds daily for any signs of infection, or ask a friend or relative to do this for you.

If you have any sudden swelling, redness or leaking blood or pus from your wounds, or you think you have a temperature or are feeling generally unwell, you must seek medical advice. It is important to also contact the pain nurses to let them know. Please ensure this is done on the same day you notice these symptoms. If it is out of hours or you have been unable to speak to one of the pain team, please seek advice from your GP, call 111 or go to A&E if you are unwell.

We may ask you to avoid certain activities following your PNS implant, though it is important to try and maintain your normal activity level. We will advise you to avoid any twisting of your body near to where your lead is implanted, advise against any strenuous activity, and not to do any heavy lifting for at least 6 weeks following your implant. The pain team can discuss this further with you more specifically to your individual stimulator or can answer any queries or questions you have.

Programming of your stimulator:

When your stimulator is programmed, you may have more than one program to try. The company representative or nurse specialist will explain about the programs and will show you how to use your programmer, battery and any external wearables that you may need. Please follow the advice given by the company representative or nurse specialist about how and when to trial your programs in order to find which is the most beneficial for you. Please do not rush, as it can take time to recover following the implant procedure and time to find out which programs work best for you.

Sometimes the stimulator is set to give you a tingling sensation whilst it is switched on. Other programs are set so that you cannot feel any stimulation.

Occipital Nerve Stimulation

Hello, I’m Dr. Ganesan Baranidharan, and I’m one of the consultants at Leeds Teaching Hospitals Trust. You’re here because you have been selected to have a therapy called occipital nerve stimulation. In the next few minutes, I will explain what occipital nerve stimulation is, when we choose to perform it, how it is done, what can go wrong, and the aftercare.

Occipital nerve stimulation involves stimulating specific nerves with small electrical wires to treat various kinds of headaches. Common reasons for this treatment include migraine, cluster headaches, and occipital neuralgia (nerve pain in the occipital region).

This procedure is done as a day case. You will have a pre-assessment to check your medical conditions and plan for anaesthesia and sedation. An anaesthetist will manage your sedation, and you will be given an antiseptic wash as per the hospital policy to reduce the risk of infection. The procedure is done under mild sedation and local anaesthesia, meaning you will be awake but comfortable due to painkillers and sleepy medications administered by the anaesthetist. You can discuss the details of sedation during the pre-assessment and again with the anaesthetist on the day of the procedure. Your pain consultant will call you 10 to 15 days before the operation to address any concerns or questions you may have. Once you arrive on the day of the operation, you’ll also have the opportunity to talk to your consultant if needed.

After you have given your consent, you’ll enter the operating room, which will have a team of professionals with specific roles. You will be positioned face down on the operating table. A needle will be placed in the back of your hand for antibiotics and sedation. The surgeon will shave the back of your head (please do not trim your hair prior to the procedure as it will help with the shaving). After the shave, a small incision will be made in the middle of your head, and wires will be placed over the nerves. These wires can be positioned in the middle or lower part of your head. Once the wires are in place, they are tunnelled under the skin toward the shoulder blades or sometimes underneath the head. The wires have four electrical contacts and tines (hooks) that help hold them in place. There is also an antenna at the back of the wire that receives the electrical signals. The wires communicate with a pad and a battery, which can be external, and occasionally we use implantable batteries, though this is very rare. If implantable batteries are used, the wire will be tunnelled to the chest wall or the buttock area, where the battery is placed inside the body.

After surgery, you might use the therapy for anywhere from one hour a day to as long as needed, depending on your response to electrical stimulation. However, this therapy is not guaranteed to work for everyone. If we start with 10 people, around six might experience significant benefit. The therapy can reduce the intensity and frequency of headaches, and it may improve your quality of life, allowing you to do things like go to the cinema, which might not have been possible before. If it doesn’t work, the wires can be safely removed. We typically allow 6 months to a year to assess whether the therapy has worked.

As with any surgery, there are potential risks. Infection is a common concern, with a risk ranging from 0.2% to 2%, meaning about two out of 100 people might experience an infection. Pain after the procedure is also common due to the placement of wires in the back of your head, which can cause tenderness and muscle spasms temporarily. The wires may also erode over time, especially if they move with neck movement. In some cases, wires may need to be trimmed or completely removed to prevent infections. Other complications can include bleeding, allergic reactions, and problems with the implanted hardware, such as battery failure or issues with rechargeability. Swelling, due to fluid or blood collection around the surgical site, can also occur.

Post-operative care is crucial. After surgery, you can begin mobilizing once you’re back on the ward. While some discomfort is normal, pain relief will be provided as needed. We advise against prolonged sitting or standing, but gentle movement and normal daily activities will support healing. You will need to book an appointment with your GP or practice nurse for a wound check 2 weeks after surgery. If this isn’t possible, you may need to contact the pain nurses at Leeds and send pictures of the wound for review. You will not be able to shower until the dressing is removed, which will happen 3 days after the procedure. Once the dressing is removed, you can shower, but be gentle and do not scrub or pick at the wound. Avoid swimming, hot tubs, saunas, or steam rooms for at least 6 weeks to reduce the risk of infection.

Be vigilant for signs of infection, including redness, excessive swelling, increased pain, or leakage of fluid or pus. If you develop a fever or feel unwell, contact the pain nurses immediately or seek advice from your GP or A&E if it’s after hours. If you have stopped taking any medications prior to surgery, such as blood thinners, ask when they can be safely restarted. Continue your regular pain medications until you have fully recovered from the procedure.

Regarding driving, you can be a passenger in a car immediately, but avoid driving for at least 4 weeks. This will allow the wires to settle and reduce the risk of them moving or eroding. If you have questions, feel free to discuss them with your consultant, especially regarding driving restrictions based on where the wires are placed.

It’s useful to watch this video with your partner or a caregiver so that both of you can write down any questions to ask during your next appointment. Thank you.

21. Multifidus (Back) Muscle Stimulation

Hello, I’m Dr. Ganesan Baranidharan. I’m one of the consultants at the Leeds Teaching Hospitals NHS Trust. You’re here because you have been selected to have a therapy called multifidus muscle stimulation, which is a back muscle stimulation.

In the next 10 minutes, I will try and explain what multifidus muscle stimulation is, when we choose to do this, how it is done, complications, and the aftercare.
What is the multifidus muscle?

The multifidus muscle is a long, thick, deep muscle in the back that helps stabilize the spine and your lower back when doing things like exercising or large muscle movement activities like bending over to pick something up.

This movement is consciously controlled from the brain. We also have subconscious control—where we don’t know, but the brain actually controls it—and these are called the deep stabilizing muscles for smaller micro-movements. Things like brushing your teeth over the sink, washing dishes, reaching out for something, or prolonged sitting and standing—we don’t physically try to control the muscle.

Imagine if this muscle is sprained: these involuntary motions can be affected. The signals between the brain and the muscle can be disrupted.

Let’s look at this slide: when you have an injury to your back muscle—either from bending down, lifting, or overloading your back—you sustain an injury.

Normally, with physiotherapy and core strength improvement, this gets better.
In a small proportion of people, the transmission between your muscles and the brain becomes disrupted. The neural control changes, and the muscle starts becoming dysfunctional. As it becomes dysfunctional, it can then start becoming atrophied, which is basically getting smaller and thinner. A fat layer starts building up within the muscle—as you can see in this picture—showing what happens when you initially have an injury and, as time goes on, how the fat infiltrates into the muscle.

Imagine having fat in a really functional muscle. The muscle becomes less functional as it can’t contract with the fat in between.

The multifidus muscle runs along the entire length of the back. This muscle helps with bending forward, bending backward, rotating, and moving onto the sides. These are the stabilizing muscles for your lower back.

A weak or atrophied multifidus muscle can cause back pain that ranges from a dull ache to sharp discomfort. This can sometimes even radiate down to your buttocks or legs.

These muscles, if they get injured, do not automatically get better. We will have to work on things such as exercise, physiotherapy, and Pilates. These things can help recover these muscles.

Who is suitable for the therapy?

Patients who have long-standing back pain where we feel the pain is arising from the muscle. They would have tried various treatments not suitable for surgery, including things such as physiotherapy, conservative medical management, and medications—and still have persistent back pain.

We perform a few clinical tests looking at the multifidus muscles. We are at quite early stages, as this treatment has only been available in the last two years or so. We also have quite a few research projects running to try and understand more about this therapy.

We will provide you with information about these clinical studies if you’re interested in taking part. If you have been put through the multifidus stimulation pathway, kindly ask the team about any specific research studies going on in this area. If you are willing to take part, that will be very helpful for future patients.

How is the procedure done?

This is done as a day case. You will have a pre-assessment to check your medical conditions and to plan for the anaesthesia and sedation. Normally, the anaesthetist will manage this.

You will also be given an antiseptic wash, as per hospital policy, to prevent and reduce infection a few days before your operation.

This procedure is done under mild sedation and local anaesthetic—not under general anaesthesia. We do not put you to sleep for this. You will be awake but comfortable, with strong painkillers and some sleepy drugs given through a drip by the anaesthetist.

You can discuss this at the pre-assessment, but more appropriately it would be on the day with your anaesthetist, who will visit you before the operation.

Your pain consultant will have a phone call with you at least 10 or 15 days before your operation to go through any concerns. Kindly write down any queries after watching this video so you can ask them on the day of your operation.

You will also have a chance to talk to your consultant for any further queries. Once you’ve been consented, you will come into an operating room as shown.
The operating room will have multiple personnel with specific duties. You will be placed on an operating table in a prone position, which means on your belly. A needle will be placed in the back of your hand for antibiotics and sedation.

The nerve that helps stimulate the multifidus muscle is outside the spine, and we specifically target one nerve at the third lumbar vertebrae. This is chosen because this nerve, when stimulated, contracts all the muscle groups.

The wire is injected and is held in place by a special tine, which is like a hook—as shown in the picture—that grips the muscle. This is then tested to make sure we can get good muscle stimulation, followed by tunnelling this wire either to your buttock or to the flank, where a battery is placed.

All of these will be inside your body. The wound will be closed with mostly absorbable stitches. Sometimes we do use staples or non-absorbable stitches, which will need removing after 10 days.

The complications are very similar to spinal cord stimulation. I would advise you to go back to the video on spinal cord stimulation complications.

The only difference here is the wires are placed outside the spine, so the neurological complications—such as paralysis—are very, very, very rare.
Bleeding, infection, nerve damage, allergy to medications, problems with anaesthesia, discomfort around the battery site, internal movement, wire slipping, wire breaking, allergy to the implant material, loss of pain relief, revision surgery—all these things are very similar.

The aftercare is also exactly similar to spinal cord stimulation. So I advise you to look at the aftercare video on spinal cord stimulation.

Is this therapy guaranteed to work?

I would probably say that with any therapy that we try to use, there is going to be some positive outcomes and some negative outcomes. Not every patient will have a positive outcome.

Once you have watched the video, you will have multiple questions. Kindly write these down, as you may not remember all of them. Keep this list for your next appointment with our specialist nurses, which will either be a video or face-to-face appointment, so you can ask these questions.

Also, watch this with your loved ones so they can also give you some tips on asking specific questions.

Thank you for watching this video. I hope this was helpful. Kindly make sure that you’ve taken a note of all the questions.

There is also a website from the company Mainstay Medical, which will provide you with some information if you are interested in looking at it before talking to our nurses.

Thank you.