To undergo Microvascular Decompression (MVD) surgery is not an easy decision to make and this guide is intended to give you an idea of what it might be like to undergo the procedure and thereby help you decide if it is for you. It is not intended to replace the medical advice given by your doctors and you should always ultimately refer to your medical team for guidance.
Thanks to Julie Vanner for writing the original guide which has been edited andaugmented, to produce this version. Thanks also to the 14 other TN patients who shared their MVD experiences with Julie to provide a patient’s perspective of the procedure.
Please note that the information in this guide relates principally to MVD procedures carried out in the UK. Practices in other countries may be different and you should check the details of the procedure with your surgeon.
This information should be read in conjunction with the previous section Treating TN with Surgery.
Common questions about MVD surgery
Should I ask how many successful MVDs my neurosurgeon has performed in the past?
Absolutely. TN is not particularly common so an MVD is not an everyday procedure for all neurosurgeons, however experienced they may be. So ask your neurosurgeon about their history of performing MVD procedures and their success rate: they should be prepared to discuss this with you. In a survey of 15 TN patients, the most successful results were obtained from neurosurgeons who were experienced in the procedure. Some neurology centres are more experienced in performing MVD procedures than others: contact our Telephone Helpline for more information.
Pre-operative assessment
As for other types of surgery, before you have the operation you will be called in to have a pre-operative assessment. This appointment is generally to check your health and collect a medical history prior to surgery. It is a good time to ask any last-minute questions that you might have with regards to the hospital procedure and what to expect after the operation.
Must there be nerve compression seen on an MRI scan for me to have an MVD?
No, because it is possible for there to be compression that is not visible on MRI – it depends on the quality of the scan
Some neurologists are reluctant to advise MVD if no compression is found on MRI. However, it is important to realise that there are surgeons who will do an exploratory procedure even if no compression is evident beforehand. This is because they know it is possible to find compressions that are not visible on MRI. They may find causes of compression, other than a blood vessel, e.g. a small benign tumour such as a meningioma, which can be removed.
Also, even if no compression is found on operation, some surgeons will perform other treatments on the trigeminal nerve, which may reduce the pain. These include what is called internal neurolysis or combing of the nerve in which the nerve fibres are delicately separated. As the nerve is manipulated it can result in varying degrees of numbness.
So, if you are being denied an MVD due to lack of visible compression on MRI, but you would really like to have an exploratory operation done, you can ask to be referred to another neurosurgeon who may be happy to do one.
What about hair shaving and scarring?
Usually only very minimal shaving of hair behind the ear is necessary. If you have long hair, the shaved area will be covered by the rest of the hair. In the case of short hair, the shaved area will quickly grow back and blend in.
The incision is usually a straight line, 2-4 inches long, just behind the ear. An American method, involving a titanium plate being fitted gives a more horseshoe-shaped scar. Normally staples, stitches or glue are used to seal the incision. Until the dressing is removed, you will be advised to keep the wound dry and clean, so hair washing is not recommended. Ask about wound care if such information is not automatically provided.
The following photographs give you an idea of what a typical MVD incision looks like immediately after surgery and then sometime later after it has healed. not sure the pics are high enough res
What was the main factor for others deciding to have MVD?
The main deciding factors are usually unmanageable pain levels, feeling like a ‘zombie’ due to medications, wanting to stop taking medication, pain not being effectively controlled by medication and being unable to cope with the side effects of medications. For some, the impact of TN on their ability to work is a motivating factor.
How long does the operation take?
This varies but the average length of the operation is about 3 – 4 hours. However, if the compression is on the underside of the trigeminal nerve and/or there are several compressions, it can take up to 6 hours.
How am I likely to feel immediately on waking up from the operation?
Again, this varies from person to person. Some people have a more complicated surgery than others, which can lead to more temporary side effects on waking. It is common to be given a morphine drip after the operation to relieve pain and you will probably be in the recovery room for several hours after the operation. For some hospitals, it is common procedure to send you straight to the High Dependency Unit (HDU) after the operation. This is standard procedure and you and your relatives should not be alarmed by this.
It is very common to be sick on waking, although anti-sickness drugs are given during surgery. You may also feel very dizzy or light-headed, have buzzing in the ears and feel generally disorientated, ‘hazy’ or sleepy after the surgery. Some describe the feeling as like a severe hangover. There is likely to be pain at the wound site and possibly a sore neck/head. Some people have very few after effects while others are quite badly affected for a while.
How bad is the post-operative pain likely to be?
Most people find that the pain of surgery is nothing like their TN pain but it varies from person to person from ‘no pain’, to ‘slightly sore’ through to ‘very painful’. Pain medication is often given before you wake up and for most this offers good pain control. Some people have hardly any pain at all and only need paracetamol after the immediate post-operative pain-relief. Knowing that post-operative pain and discomfort is likely to be only temporary is a comfort to most people and makes it bearable.
What about side effects and complications of MVD surgery?
Visual and/or hearing disturbances can occur after the operation. It is possible to lose vision in one or both eyes or to have difficulty focussing and even double vision. Usually visual disturbances are temporary.
Hearing disturbances include ‘roaring’, buzzing or ringing in the ears and/or hearing impairment after the operation. Again, hearing disturbances are usually temporary but may take several weeks to resolve. Occasionally a minor surgical intervention may be required to resolve them.
It is also possible to have alterations to feeling in the face following MVD. These effects may be numbness, altered sensation or an exaggerated response to painful stimuli. These effects are less common after MVD than with other surgical procedures for TN and are usually (but not always) temporary. Infection in the wound site is a relatively uncommon complication and may need a course of antibiotics. Once the dressing has been removed, you should look out for any weeping, redness or heat coming from the wound which might indicate infection.
What is a cerebrospinal fluid leak?
You will be warned to look out for signs of a leak of cerebrospinal fluid (CSF) such as a runny nose, wet wound or runny ear which can occur within a week or two of the operation. It is very important to report this complication quickly so that it can be treated and avoid more serious problems. If not treated promptly, it can lead to meningitis. Sometimes it requires a second operation but at other times a lumber puncture can be sufficient.
The surgical staff will ensure that you are fully aware of all potential complications before you sign to give your consent to surgery. It is important to listen carefully and weigh these potential risks against the benefits before going ahead with surgery.
Will I have a urinary catheter fitted at any point during the procedure?
This varies between hospitals and it is possible that you will have a urinary catheter fitted at some stage during the procedure. If you are worried about the hospital’s policy on catheters, be sure to ask about it at your pre-operative assessment.
How long will I be in hospital?
Your length of stay will vary depending on hospital policy, the speed of your recovery and whether there are any post-operative complications. So, hospital stay can vary from 48hours to 8 days with the average being about 2 – 5days. Delayed complications, such as infection or a CSF leak may lead to hospital readmission.
When will the stitches or staples be removed?
This will vary according to the type of closure method used. Dissolvable sutures clearly do not need to be removed. Non-dissolvable stitches or staples, are usually removed 3 – 10 days after surgery, the most common time being around 7 days. Many people are very glad to have the staples/stitches removed as it relieves feelings of pressure at the wound site. Although staples may look like they will be painful to remove, that is not necessarily the case.
Will I be pain free immediately after surgery?
Although a high percentage (90%) of people are immediately pain free when they wake up from surgery, others will still have a some pains for a few days or weeks after the operation, sometimes even for a few months afterwards. This is because the nerve can take time to recover and gradually settles down after surgery. While complete pain relief immediately after surgery is usually a sign that the procedure has worked well, persistent stabbing pains do not necessarily mean that the procedure has failed and they will usually decrease completely after a few weeks.
Will I still need medication after MVD?
Roughly 70% of people who undergo MVD will have long-term pain relief with total freedom from TN medication.
Relapse and recurrence of the pain occurs in up to 20% of initially successful MVDs and is experienced most often within the first 2 years after the procedure. If the initial MVD is not successful, it is possible to have a second one, and achieve pain relief the second time. MVD is most likely to be successful in classic TN (TN1), rather than in TN with concomitant pain (TN2) and in those in whom a compression is noted rather than a contact. Therefore, it is possible that you may not achieve complete relief from the aching, burning pain and may still need to take some medication. In some patients,the primary cause for the TN may not be the compression and hence the procedure is not successful.
When and how will I come off my medications?
Some consultants advise reducing or stopping TN medication before surgery but this is unusual. Generally, it is advised that medication dosages are gradually reduced over a period of weeks to months after MVD, as there can be side effects from withdrawing from medications too quickly. Your surgeon will advise you on coming off your medications.
Many people find that coming off medications completely is one of the best aspects of the MVD process as energy levels return to pre-TN levels and drug side effects are no longer experienced. Over two-thirds of people who have MVD are still pain-free without medication after 10 years, and half of the remainder are well-controlled on modest doses of drugs.
What will my recovery be like and what help will I need?
On discharge from hospital, you should be able to move around unaided, but it is advisable to plan to have help and supervision for at least 1 – 2 weeks after you arrive home. While recovery may be slow, you will feel gradually better each day. The most important aid to recovery is to rest, be patient and not rush your return to normal activities.
How long do people need assistance at home after MVD?
It can vary from days to months, but your personal need for assistance during the early weeks will depend on how quickly you recover, your general health and your domestic situation. In a survey of 15 people who had MVD, help at home was needed for an average of 2 weeks.
How will I feel after the first week?
Everyone’s experiences will differ slightly, with some people more affected by one type of symptom than others. In the first week, common experiences include tiredness and sleeping a lot, unsteadiness and inability to walk far and low mood. Some people feel very incapacitated in the first week and need assistance with many daily activities including washing, dressing, housework and cooking; while others are relatively independent immediately. There may be headache and soreness from the wound, and it may make sleeping uncomfortable, requiring pain medication at night (also see the ‘Advice’ section below).
How will I feel in the subsequent weeks?
Recovery is usually gradual and as each week passes you will feel less tired and slowly be able to do more. This will probably start to be apparent by about the third or fourth week. In a survey of 15 people who had MVD, most felt they were over the worst of their recovery and starting to get back to normal by 6 weeks. For those with post-operative complications, it took slightly longer.
When will I be able to go back to work?
This is obviously dependent on your personal recovery, but in those surveyed it was 4 -8 weeks afterwards. Post-operative infection in one person meant they could not return to work for nearly 5 months. One student participant returned to studying after 3 weeks but on reflection felt that this was too soon. It is important not to rush your recovery or to return to work before you feel able. A phased return is a good way to return to your employment as you can gauge your recovery and ease yourself back into the workplace. It depends on your job too: whether it is desk-based or requires physical effort.
For how long will I need childcare cover during my recovery?
This will also be dependent on your personal recovery, but plan as much childcare cover as possible at the outset, in case of post-operative infection or extra time in hospital. The more help with childcare the better, and you can then ease yourself back into parenting duties in line with your recovery. On average, people seem to need 2 – 4 weeks of assistance with childcare. Some report that even after 2 weeks of complete childcare, they still needed some help with their young children for several weeks, sometimes because of lingering side effects, e.g. to vision.
When will I be able to drive again?
When you are discharged from hospital, your neurosurgeon should be able to give you an indication of how long you should refrain from driving. The usual recommendation is 6 weeks, but this could be delayed by any complications of the surgery. While there is currently no specific advice on the DVLA website about driving after MVD, there is a page regarding driving after any surgery (https://www.gov.uk/surgery-and-driving) and the rules are often updated. In general, you are fit to drive once your neurosurgeon/doctor says so (and you feel fit to do so) but it is important to also check with your insurance company. It is possible that you might receive conflicting advice from your neurosurgeon and your GP. If in doubt, bear in mind that your neurosurgeon will have more experience of how your recovery is likely to progress than your GP, but also make sure that your insurance will cover you.
What advice would you give me for my recovery period?
As mentioned previously, everybody’s recovery will be different, but the following points are based on comments from people who have had an MVD, and so are worth bearing in mind:
Rest as much as you can and listen to your body, particularly in the first couple of weeks. If you feel tired, rest. If it is painful to do something, then leave it. Be patient with your recovery: do not rush it or try to do too much. Take everything as slowly as possible and get as much help as you can in the early weeks.
Follow your discharge instructions fully. They can be helpful in giving you daily and weekly goals which, when accomplished, will enable you to see an improvement and will help to overcome worries about never getting back to normal. Think about each little improvement and what you can do, rather than dwell on what you still cannot do.
Some people experience a feeling of pressure from the wound or head which can be present for some weeks, particularly before the stitches/staples are removed. This may be worse when lying down. Consider using a neck pillow in hospital or in the car and a ‘V’ pillow for sleeping.
Plan as much help for your recovery as possible. You can always cancel over-booked help if you are feeling better, but it is harder to find extra help at the last minute when you are feeling unwell.
How does the actual experience of having an MVD compare with how people imagined it would be?
Some surveyed found it was just as they expected and some thought it was better, with less pain and shorter recovery. For others, it was worse than anticipated for some of the following reasons:
Lack of realisation of how big an operation it is and how long recovery would take.
Freedom from pain took several months, instead of being instant, as imagined.
Unexpected complications delayed recovery.
Pain and tiredness in the first week was worse than anticipated.
Even those who found the surgery worse than imagined orsuffered complications still felt the surgery was worth undergoing for the benefit of freedom from, or reduction in, TN pain and drug side effects.
Summary
The experience of having MVD surgery and the outcome, is different for everyone. Most people seem to have an overall positive experience and good outcomes in terms of reduction or complete relief from TN pain. Those whose MVD is completely successful enjoy the freedom from medication and subsequent return to a normal life, which previously had been unimaginable. But not everyone achieves complete (or even partial) pain relief and some experience distressing complications or side effects, which can be temporary or permanent. Significantly, all of the participants in the small survey mentioned said they would have another MVD if the need arose, and none had their TN pain worsened as a result of the surgery.
As with all surgery, there is the risk of complications and even (rarely) death. It is important to gather as much information as you can about potential treatments for your TN (see earlier section Treating TN with Surgery) as MVD is not the only option. Even if you think it is right for you, you may not be a suitable candidate for medical reasons. In addition to being guided by your neurosurgeon, you should also satisfy yourself that you know enough about the potential risks of MVD. Ask your surgeon about any concerns you may have about whether it is the best procedure for you.
