Tag: managing trigeminal neuralgia
Webinar – Dr Jeremy Russell
Trigeminal Neuralgia Association Australia are delighted to provide our link to the webinar presented by Dr Jeremy Russell in Dec 2022.
This webinar completes our program for 2022
Dr Jeremy Russell is one off our distinguished Medical Board Advisors, and has generously provided his time and expertise to assist all sufferers of trigeminal neuralgia.
TNAA Webinar – Dr Jeremy Russell Trigeminal Neuralgia Treatment Options – YouTube
Neuromodulation – for Trigeminal Neuralgia
Our Vice President and Tasmania support group leader, Helen Tyzack, updated her group about neuromodulation for trigeminal neuralgia back in 2021. She has provided the information she gathered, and we hope it may provide education and understanding about this treatment
Neuromodulation. In italics below I have added the contents of emails I previously sent to all those on my database. The first email was dated 22nd May 2021.
Yesterday it was exciting to watch and listen to the Webinar from the USA at 9am; chaired by the president of the Facial Pain Association of America Dr Jeffrey Brown interviewing a Member of their Medical Board, Dr Konstantin, (an expert in neuromodulation of facial pain). Previously, thanks to member Peter, I had sent you the information for you to link in. I received an immediate response yesterday from Peter after the Webinar and I wonder how many others took up this excellent opportunity.
This free opportunity was excellent but whether it was useful depends on your circumstances. So, what did I learn? In brief,
- Neuromodulation is management, not cure, by a non-destructive change in our nerve activity – using a device
- The device delivers non-painful sensations to the nerve.
- Neuromodulation is minimally invasive
- Neuromodulation can be facilitated inside our body or outside depending on need and circumstances.
- Neuromodulation always involves the use of small devices. That is, the chemical modulation of our nerves by our medications does not count as neuromodulation.
- Neuromodulation does NOT work for people with Typical Trigeminal Neuralgia and usually makes the pain worse.
- Neuromodulation does work for people with neuropathic pain on the trigeminal nerve; it is most effective for those who have more or less constant continuing unpleasant pain. Some sufferers with Typical TN can, over time, develop this neuropathic continuous facial pain – either with or without the Typical TN (and its sharp shooting electric shocks). The neuromodulation may (and may not) work for such people.
- The process is for the specialist to test a potential patient with an external device over a week to 10 days making adjustments so that the sufferer can work out whether this neuromodulation process might be comfortable for them and reduce or remove the pain. If all works well then, a device is implanted – and can be there for up to 15-18 years if need be. If there a period of 6 months without the pain, the thinking is that the device can be removed, and neuromodulation is no longer required.
- Usually, you do NOT get the ideal result first up and it needs reworking so should be seen as a work in progress. Every person’s body is unique and therefore the device controls have to be uniquely set up.
- Once a week the device needs to be recharged and this takes about 30-40 minutes
- Neuromodulation also works well with sufferers of Occipital Neuralgia at the back of the head but does not work for migraines.
- Who does neuromodulation treatments? Find only the most experienced. Beware of someone who says they have 100% success – they may have only treated one or two people. The safest practitioner is the one who has already encountered complications with this process and has safely managed and solved the problems; the more complications (not of their own doing) they have safely coped with the better.
- How long before you feel relief after the device is implanted? Rarely immediately and mostly hours, days or weeks later. The message was to be open minded and not to panic if the response is not fast. Allow time for your body to adjust
Main point: Not every treatment will work for every person. No treatment will work all the time.
I am fortunate at the moment not to be taking medications or in pain. But I am mindful that the time will come when the pain returns. This Webinar was helpful because I now know more about my options for managing the pain. In Tasmania where would I go for advice? I would be talking with members of the Trigeminal Neuralgia Associations of Australia’s Medical Advisory Board.
My second email was dated 10th August.
A few months ago, I told you I had listened to/watched webinars on the topic of Neuromodulation as a treatment for Trigeminal Neuralgia pain. Afterwards, I set out to determine if a specialist might come to Tasmania and talk to people in our Support Group and any others who might be interested.
Since then, I have been exchanging emails with Dr Nick Christelis, the President of the Neuromodulation Society of Australia and New Zealand. Recently, we talked by phone about the options, but a visit to Tasmania by a specialist to meet with TN sufferers is not on the cards. However –
Nick confirmed there was not a specialist in Tasmania, but he explained that he had used neuromodulation on patients with Trigeminal Neuralgia. He would welcome contact from any Tasmanian sufferers and be prepared to do an initial Telehealth consultation. His contact details are on the website: https://painspecialistsaustralia.com.au and his consultation and surgical location is within Warringal Private Hospital in the Melbourne suburb of Heidelberg, Victoria. Phone 1300 798 682. If you read through this page and watch the video, then you will understand more about the services he offers. His site has this to say about Nick:
Nick now practices 100% within the field of pain medicine. He is an interventional pain specialist combining a multidisciplinary team approach with advanced pain interventional techniques like nerve and joint blocks, epidural injections, radiofrequency ablation, pulsed radiofrequency, spinal cord stimulation and other advanced neuromodulation techniques.
Nick explained that a quarterly webinar is offered from within his organisation and can be accessed on the bellow link
Please note that I have no experience of neuromodulation and no experience of Nick’s capabilities, so this email is not meant to be a recommendation. Rather, I am letting you know about this option, in case neuromodulation is a process which could improve your quality of life.
If you decide to try this, I would be very interested to know what the process is and all the ins and outs. Not to mention whether it was useful for you and reduced, removed your pain. I am sure other sufferers would also be interested so please keep me posted.
For facial pain sufferers in other mainland states, I recommend you read through the Neuromodulation Society of Australia and New Zealand website to find specialists close to you.
Extra Q&A after the recent webinar on neuromodulation pain management produced by the USA Facial Pain Association
1. Can a TENS unit applied somewhere help? Is the concept of neuromodulation similar to using a TENS unit? thank you.
The TENS is indeed one of the types of neuromodulation, and we do recommend trying it in patients who can tolerate placement electrodes onto painful regions. It tends to be much less effective than other neuromodulation approaches, but is definitely worth trying due to its low invasiveness. Keep in mind, that pain that does not respond to TENS may still be relieved by invasive neuromodulation with implanted devices.
2. Explain the relationship between neuromodulation and neuroplasticity?
Neuromodulation in many ways relies on neuroplasticity – we are trying to modify neural activity by adding neuromodulation signals, and neural plasticity plays a major role in cooling down hyperactive parts of the nervous system that are responsible for development of pain in the first place.
3. “Explain foramen ovale stimulation?” What’s the difference
I am not aware of “foramen ovale stimulation” – most likely, the procedure which is referred here is the stimulation of the trigeminal ganglion (Gasserian ganglion) that is reached through foramen ovale. This approach is known for many years but is rarely used, mostly because it is difficult to keep electrodes in that location as they tend to migrate over time. In principle, however, the trigeminal ganglion stimulation is a very effective approach to control neuropathic facial pain and may be considered if the pain involves several trigeminal branches at once.
4. Can it be used for a patient with a pacemaker?
Yes, neuromodulation can be used in presence of pacemakers and defibrillators. Your doctors need to be aware of these devices so the proper precautions may be made in choosing the device and its location in the body.
5. What is the success related to pain as a result of acoustic neuroma surgery/radiosurgery?
The mere presence of acoustic neuromas, the surgery to remove the tumor, and sometimes radiosurgery for the tumor may result in development of facial pain. Sometimes it presents as secondary trigeminal neuralgia and its treatment resembles trigeminal neuralgia management algorithm, but in some cases the patients develop trigeminal neuropathic pain or occipital neuralgia, and these conditions may great indications for neuromodulation.
6. Would it help with Geniculate Neuralgia?
The pain of geniculate neuralgia has not been investigated as an indication for neuromodulation, or at least I have not heard of it. The classical geniculate neuralgia may require either microvascular decompression or, more often, an open rhizotomy of nervus intermedius – this is what I normally recommend to my patients.
7. Once implanted, can the patient stop taking medications?
Yes, it is possible – but we usually start considering weaning pain medications only after the patients report symptomatic improvement from neuromodulation. Majority of patients are able to significantly reduce the amount of their pain-relieving medications as a result.
8. How much experience does Dr Slavin has with this? How many has Dr Slavin done?
Neuromodulation is a large part of my practice ever since I completed my fellowship in 1999 – and I do between 100 and 150 neuromodulation surgeries every year. Very few of these surgeries are done for facial pain as most facial pain patients I see end up having other interventions, including microvascular decompressions, percutaneous rhizotomy, radiosurgery, etc. Most neuromodulation surgeries in my practice are still done for pain in lower back and extremities, Parkinson disease and tremor, epilepsy and other functional neurosurgical conditions.
9. If I had an MVD without any pain relief, would this help?
Neuromodulation is generally recommended for trigeminal neuropathic pain and not for trigeminal neuralgia. If the patient’s typical trigeminal neuralgia did not improve with microvascular decompression, we would usually consider either repeating the decompression or proceeding with percutaneous interventions. If the pain is non-neuralgic but rather neuropathic in nature, neuromodulation would be an appropriate thing to consider.
10. Are the electrodes ever implanted into the brain and if so, where?
The brain stimulation for facial pain is usually reserved for patients with anesthesia dolorosa – the electrodes are placed either over the surface of the brain (so called motor cortex stimulation) or in the depth of the brain in the area of thalamus or brainstem (so called deep brain stimulation).
11. I am just finishing TMS therapy. It has not helped me. I like Dr. Brown’s suggestion to “adjust the magnet.” How can the Dr. find the correct “spot” for neuropathic pain?
It may be challenging to find the right spot for TMS. We usually recommend finding the face representation in the contralateral motor cortex or focusing stimulation at pre-motor area (which is used for treatment of depression).
12. Following left craniotomy for Trigeminal Schwannoma I have a mix of numbness on lower jaw but extremely sensitive and continuous pain on temple, cheek, and upper jaw. Is the neuro modulation compatible when both numbness and sensitivity are combined?
To answer your question, it would be important to find out whether the numbness is complete or partial. Stimulation of peripheral branches may help in case of partial numbness. Complete numbness may necessitate stimulation of the uppermost cervical spinal cord, the deep brain structures or the motor cortex.
13. Hi, I have a question from the webinar. Dr. Slavin described neuromodulation, if I understood correctly, as an option for trigeminal neuropathic pain but not trigeminal neuralgia and described TN2 symptoms as neuropathic pain. Just to clarify before I get my hopes up, is “trigeminal neuropathy” the same thing as TN2?
Trigeminal neuropathic pain is different from TN2 but there is certain overlap between them. As a matter of fact, about 20 years ago we published a theory that postulated a possible transition from TN2 to trigeminal neuropathic pain as a part natural history of this condition. Right now, we do not recommend neuromodulation for TN2, but use it routinely and frequently for trigeminal neuropathic pain.
The original webinar published by the FPA can be watched below –
Facial Pain Association Neuromodulation – YouTube
The Dialectic of Pain: Synthesizing Acceptance and change
Dr. Deborah Barrett offers a framework and tools to help people improve their quality of life, just as they are, while also reducing pain and suffering. Her work draws from empirically based cognitive and behavioral interventions, and she practices what she preaches every day.
We thank the FPA for the great work they are doing publishing webinars in this field.
Watch the webinar here
4 What to Do When Your Surgeon Says There is Nothing Left to Do
Webinar – Prof Arun Aggarwal- presenting to the emergency department for pain management
When Trigeminal Neuralgia pain is too much: presenting to the emergency department for pain management
In July 2022 we were delighted to host a webinar chaired by A/Prof Liam Caffery and presented by Prof Arun Aggarwal
Professor Arun Aggarwal is a highly experienced neurologist with expertise in chronic pain management.
Professor Aggarwal graduated from the University of Adelaide in 1987 and went on to specialise in neurology, rehabilitation medicine and pain medicine and is a Fellow of the Royal Australasian College of Physicians, the Australasian Faculty of Rehabilitation Medicine, and the Australasian Faculty of Pain Medicine.
Professor Aggarwal completed his PhD at the University of Sydney on motor neuron disease. He currently oversees a number of research trials at the University of Sydney’s Medical School including trials on trigeminal neuralgia and chronic neuropathic pain.
Professor Aggarwal sits on the on the Medical Advisory Board of Trigeminal Neuralgia Association.
In this webinar he will speak on “When trigeminal neuralgia pain is too much: presenting to the emergency department for pain management”
You may download the presentation with this link Acute Pain Management for Trigeminal Neuralgia - A/Prof Arun Aggarwal
Our Association is working hard to provide clearly understood information, not only to our sufferers but to the medical and dental profession. We thank all who logged in to watch the webinar live and they had the opportunity to ask questions and receive replies.
We would like to thank our Medical Advisory Board Members for the work they do and the advocacy they provide to all sufferers. Contact details for our MAB members can be found here
012 – YouTube TNAA – Prof Arun Aggarwal – When Trigeminal Neuralgia pain
is too much Presenting to the Emergency Department
3.6 CyberKnife: Should I Be Treated by It?
Factors that may affect recurrence of trigeminal neuralgia after percutaneous balloon compression
Most sufferers with trigeminal neuralgia have heard of the surgical treatment, Microvascular Decompression (MVD for short), but fewer know about percutaneous balloon compression.
I can speak from first-hand experience of both procedures, and of the success with the latter. That is, I remain pain and medication free after five and a half years since a simple and fast balloon compression procedure crushed my trigeminal nerve. But I have always wondered and worried that the pain may return. To date I am extremely happy with the situation as are others I know who have undertaken this procedure.
The article ‘Factors that may affect recurrence of trigeminal neuralgia after percutaneous balloon compression’, was researched and written by Wenming Lv, Wenjing Hu, Lingyi Chi, and Liangwen Zhang and published in Journal of Clinical Neuroscience Volume 99, May 2022, Pages 248-252, can be read here
If you are considering asking for a Balloon Compression procedure, be aware there are risks and side-effects and that your research should be thorough. You need to trust that your neurosurgeon has considerable experience with this procedure, and has informed you of all aspects.
One of the possible side-effects about which I was warned, was that I might have some or a lot of facial numbness on the affected side of my face. I did have numbness on half an eyelid, half my nose and half the top of my upper lip. In the above article the finding was that numbness, on average, disappeared around three years. That is about right for me, although on rare occasions in the past couple of years I have a sense of it in my upper lip and nose. I am delighted to report that the numbness never caused my face to slump or change and has never been visible, it has always been mild, and it has never inconvenienced me. Having said this, each person is different and the results for another could be dramatically different – so please gather all information from a knowledgeable professional if considering this. For me, losing the pain and reliance on medication was worth some numbness. I was fortunate to be able to reclaim my life.
How to Handle Facial Pain in Public
Coping with pain in public is a subject that our sufferers deal with constantly
The Facial Pain Association has great resources and publish regular articles. The following article was published by them in Aril 2021 and provides great coping tips
How to Handle Facial Pain in Public
Facial pain can make even the most routine outings no longer seem fun or meaningful. But going out can help you maintain your normalcy, which will help you to distract yourself from the pain. And with the warmer weather, there can be many more opportunities for such distractions. Below are tips on how to deal with pain in public, so that you can still enjoy yourself while out with family, friends, a significant other, or by yourself.
Know when to go out
Know what causes your attacks and know how to recognize when is a good time to stay in and when is a good time to go out
Fluctuation in the barometric pressures can cause swelling, which can cause increased irritation to the nerves which could lead to an attack
Force yourself to go out
This can be beneficial for your mental state. By surrounding yourself with good friends or family, you are distracting yourself from facial pain attacks. Creating memories that don’t have to do with the pain can be called upon when you are suffering and need to escape. In addition, positive environments create positive thinking- and we all know the power of the mind.
Alone or with someone?
Know your limits- if you know that going out may cause an attack and you don’t want people to see you like that then opt to go alone. If you know that you want the support in case of an attack, bring a loved one. Having someone with you can distract your mind and then you won’t have time to worry about an attack (the mind is a powerful thing!)
When you are out, being able to draw on some simple coping mechanism can alleviate your anxiety about the possibility of a pain flare, and if you should have one, these exercises can be very helpful:
- Eight count breathing
- Take a breath through your nose over an eight second span
- Hold this breath for an eight count
- Let out the breath through your mouth slowly over eight seconds
- Repeat 8 times
This helps to calm your mind and relax your muscles.
The skin between your thumb and pointer finger is a pressure point. Locate it by pressing the thumb against the index finger. The point is located at the highest spot in the bulge of that muscle. Applying pressure to this point helps to calm your body and mind. Warning: do not try this if you are pregnant.
Whatever works at home
If you have successful strategies for coping with the pain when you’re at home, don’t hesitate to try these when out. These could include:
- Heat- carry a hand warmer usually used while skiing in your bag that you can use if needed
- Essential oils or pepper cream- if you find these to help you, carry a small vial/tube in your bag.
If you feel uncomfortable letting others know you are having pain and don’t want to draw attention, these are some tricks for excusing yourself without drawing attention:
- Say you have to use the restroom. This leads to a quick and easy exit and no one will think anything of it.
- Silently get up and go for a walk (works well in large groups). A large group has so much going on already that your sudden absence won’t be noticed by all. Those who notice should know why you left.
- Take a sip of water (can be useful if opening your mouth doesn’t bring on pain. This can cause a momentary lapse in conversation and it can allow you to calm your body.
- Offer to go grab something (anything at all). This allows you to leave the situation without seeming out of the ordinary, you then can take as long as you need to return (don’t forget the said object you offered to go get).
How do you say no?
- It is always okay to say no. You know your body better than anyone else and therefore you should make the executive call. Those who care about and love you will respect your decisions.
- Usually a gentle way of saying no will go over best- for you and for the person involved.
- Using a gentle tone and way of wording will keep you relaxed which won’t aggravate your facial pain.
- If you’re calm, the other person will be too; they will want to know you’re alright and by speaking calmly, you can better give the message that you are indeed fine you just need to take it easy.
- Sometimes you may not feel like you have a choice – a family or loved one expects you to go out.
- Understand loved ones are trying to help when they force you to go out. This won’t be your favorite thing to hear a loved one say, but sometimes tough love is the best way to see that they care about you. They only want the best for you and to see you enjoy life- they are only trying to help you