Last week I had Gamma Knife to treat my trigeminal neuralgia (referred to as TN from now on). I’m writing this to document my experience and to help others obtain more information about the process.
I’ve had TN for 13 years since I was 21. I had brain surgery called Microvascular Decompression (MVD) 11 years ago which gave me 95% pain relief for 10 years. MVD was a good option for me because my TN was caused by a blood vessel touching and irritating my trigeminal nerve. It’s a very popular treatment for TN when there is a clear problem and the patient is OK to undergo brain surgery. MVD is when a piece of teflon sponge is placed in-between the blood vessel and nerve, which stops the pain, as the vessel is moved away from the nerve (no idea why the sponge doesn’t irritate the nerve but the vessel does).
Last year my TN pain started to come back. I started back on the meds (carbamazepine slow release 200mg per day) and started talking to my surgeon. I had an MRI to check which showed the sponge is still in place, therefore nobody could give me reasons/answers why I had reoccurring pain. Gamma Knife was therefore then an option for me as I’m not willing to continue on the meds. The docs always want you to try and put up with the meds for as long as possible. However my job requires me to be ‘on’ and as the meds dull my brain, I want to get off them as soon as possible.
What’s Gamma Knife?
Gamma Knife is radiosurgery which uses controlled radiation to target something specific, like a tumour, abnormality or any other malfunction in the brain. For my TN, the beams of radiation are targeted on my trigeminal nerve to destroy/disrupt it at the point when it leaves the brain stem. This stops the signals from firing which causes my pain. As my trigeminal nerve currently is aggravated from the blood vessel damage, it’s extra sensitive & therefore the nerves are firing more often than they should which causes my pain.
- I was told 70% of people with TN have 100% pain relief from Gamma. That doesn’t mean 30% have no pain relief; it means that 30% have less than 99% relief from pain.
- Pain relief doesn’t happen straight away – it can take weeks/months due to the time it takes for the injury on the nerve to be ‘created’
- It is a ‘useful’ operation to have if the doctors don’t know the root cause or you can’t have MVD for another reason
- You can only have 3 in your whole lifetime, due to the radiation – it’s not good for you generally
Gamma Knife involves you wearing a frame during the 1 hour surgery. I say ‘surgery’ but it’s not invasive; you’re in and out of hospital the same day and you aren’t put under general anaesthetic. The machine is like an MRI scan but less noisy. You have the frame on for a few hours and it’s tight on your head, so you feel extra pressure but it’s not painful. After they take it off, you have 4 bloody sore points on your head for around a week and you aren’t able to wash your hair for 3 days to stop the points getting infected.
I’m due a follow-up after 6 months.
I’m on 2x 200mg slow release carbamazepine in total. I have 1 pill in a morning and another before bed. This is sorting out my pain. I’ve been on this dose for a year now and haven’t had to increase it much at all. I can tell the effects its had on me. I’ve got a lot less energy, slower brain reactions, reduced mood, memory loss, can’t find the right words for things, bad grammar, spelling – that sort of thing.
How long does Gamma Knife take to work?
I’ve not been ab;le to get an answer out of the doctors apart from, “It is different depending on the person”. I’ve googled it and found this, although I always take advice like this with a pinch of salt:
It may take weeks, months, a year (or sometimes longer) to see the full effects of treatment. For example, pain relief if you have trigeminal neuralgia can occur anytime between one day and six months, with most people improving within one month.quote taken from: https://my.clevelandclinic.org/health/treatments/16559-gamma-knife-surgery
Day 1 – 1st October 2021
I arrived at the hospital at 7am. I stayed in a room with other patients for just over an hour, whereby we had a spot of breakfast. I was moved to another room around 8.15am and waited here until 9.15am.
I was fitted with my head frame. It took around 20 minutes in total and it was painful. First they put the loose frame on me, so they could see where the clamps would be – a total of 4 on my head; 2 on my forehead, 2 on the back of my head on each side about 2 inches behind my ear. For each point, they injected me twice with anaesthetic – this was the most painful part of the whole day. They did each of the 4 points first (hurt like hell) then did the 2nd which was less painful as the 1st anaesthetic had started to numb me.
Then they attached the frame – they tightened it up until I felt pressure, then stopped. It was uncomfortable for a few minutes then I got used to it. I could walk around but carefully as the frame was quite big.
After around 30 mins, I had an MRI. This is to see where they’ll need to target the radiation during the procedure. As MRI’s go, it was usual – noisy but they gave me ear plugs. I can’t remember exactly how long it lasted; I’m guessing 30 mins. It wasn’t too long.
After the MRI, I waited a few hours until the procedure. During this time, I relaxed (or tried to). I had lunch, drinks and visited the loo often as I was really nervous. I took my Kindle which helped the time go by and took my mind off things – I’d really recommend this.
What happened during the procedure?
It lasted in total for 50 minutes (not including the 10 minutes either side where the staff were explaining things to me). It was very similar to an MRI but less cramped. The staff put my preferred music on too – it really helped me to relax! Afterwards the staff took my frame off which took minutes & was painless but a bit weird to have the pressure taken away. The points bled quite a bit but they didn’t hurt (still numb!) The staff had me wait for 45 minutes just to make sure I was okay before I was released.
I didn’t feel anything during or after the gamma knife – nothing at all.
Day 1 – afternoon
The gamma knife procedure finished around 1pm and around 3.30pm I had intense TN pain (on the same side). It came on without me doing anything to bring it on and lasted around 30 seconds each time. I had 12 30-second shooting pain for an hour and half. It was hell; I hadn’t been told this could happen and was scared I’d damaged the nerve and this was the pain I was going to get forever.
After an hour and half, the pain went and was back to how it was before the gamma knife. My husband called the clinic where I’d been and the nurse said this pain was something that’s likely to happen, given the gamma knife has interfered with the nerve. It would have been great to know this before!
I’ve had nothing like this happen since.
I’ve had headaches but nothing too bad. The frame points are sore but have stopped bleeding. I’m not allowed to wash my hair for 3 days as it’s a risk of infection.
TN pain is still similar to how it was before; being controlled by meds.
Washed my hair a bit early as couldn’t wait any more. Scabs have grown over each point; I’m being careful not to disturb them. Otherwise, I’m okay. The points on my forehead look like spots.
Same – the scabs are slowly reducing in size.
Scabs are all off. All across the back of my head is really itchy but I’m unable to itch it. I think some of my head is numb. TN pain still the same; controlled by meds. The scabs on the back of my head (near my ear) were really big – a lot bigger than those on my forehead.
Head is still itchy and I’m still unable to itch it – part must be numb. Same face pain being controlled by meds – this is to be expected as gamma takes at least a few weeks to help the pain.
November – 1 month after
Over the last few weeks I’ve slowly had to start increasing my meds. I’m nearly at double dosage compared to before Gamma. I hadn’t had to increase my dosage for 8-10 months beforehand. I wake up now unable to talk until the meds kick in; this takes ~1-2 hours. I’m taking slow release carbamazepine but also normal ones which (seem to) get into my system quicker. I’m having 2x 100mg normals and 1x slow release (200mg) as soon as I wake up, although I’m contemplating setting my alarm a few hours before I have to get up so they’ve started getting in my system.
I called the surgery department last week where I had Gamma to talk to them – it was in a morning and I was unable to eat, or talk without pain so I had to wait until the pain eased a bit. Of course, I was upset on the call. She was understanding and reassured me this is likely to happen – although it’s weird to say, this did make me feel better as since I’ve had Gamma, I’ve wondered if I’ve done the wrong thing. I asked for a timescale on when it’s likely to get better, and she couldn’t give me one as it’s “completely different person to person”, but it will ease and to keep up with the meds.
6th November (6 weeks post Gamma)
I’ve woken up and for the first time in a few weeks, I’ve been able to talk pretty much as soon as I wake up. I’ve still had my meds as usual but it’s great being able to speak and eat first thing.
Pretty much on double meds now. I have to take 400mg in a morning (1x 200mg slow release and 2x 100mg) and wait at least an hour before I can talk. Haven’t had any of the numbness on the back of my head, it must have gone better as I haven’t noticed. The back of my head is sometimes a little itchy, where the points behind my ears were.
My first pain-free day in such a long time! I’ve had an amazing day – hardly any pain at all. I know it’s there if I do something to majorly bring it on, but on the whole, I’ve had a pain-free day. It wasn’t there when I woke up so I didn’t have to dash for meds – ahhhh! Wonderful.
Mid-Nov – start of Dec 2021 – 2 months post Gamma
Still on a lot of meds – averaging 1200mg’s per day of carbamazepine. I’ve stopped taking slow-release apart from before bedtime, as I don’t feel much effect in terms of pain relief but the side effects are terrible – I’m shattered.
Mid-Dec 2021 – 2.5 months post Gamma – diet change
*** Low salt diet *** very important !!!
I’ve read a lot about TN during my life, especially when my pain is bad, as it is now – and one thing I’ve always noticed is the mention of sodium. Sodium is used in the body to transport nerve signals and is found in foods, and most obviously, salt.
Nerve Function – Sodium supports proper nerve functioning by playing a role in action potentials. When your nerve cell receives a signal, it sends an electrochemical impulse — called an action potential — down the length of the cell to trigger communication with neighboring cells. During an action potential, sodium rushes out of your nerve cells to initiate the electrochemical impulse; a lack of sodium hinders nerve communication. As a result, sodium deficiency can cause muscle cramps due to abnormal communication between your nerves and your muscle fibers.from the article: https://healthyeating.sfgate.com/role-sodium-play-biologically-7971.html
It probably wasn’t the best time to do this (as I’m now unable to know if it’s the Gamma or my new low-sodium diet) but my pain has 90% vanished. I’ve completely changed my diet, it’s been hard, especially over Christmas, but I’M LITERALLY PAIN FREE. I don’t wake up with pain which stops me from talking; I don’t have to take pills constantly throughout the day so therefore I’m not completely shattered; I’ve started exercising again.
I started my low-salt diet at the start of December and within weeks, I’m now 90% pain-free. As mentioned I don’t know if it’s my diet, or Gamma, which is a shame, but I’m honestly not letting that hinder my happiness. I would 100% recommend you try it. It’s hard, I’m not going to lie – it’s a completely new diet so I’ve had to buy lots of new things in – it’s really amazing and shocking when you start to look at salt content in foods – considering the recommended is 6g’s of salt a day.
In 6g of salt, there is 2.4g of sodium. I don’t know exactly how much I’m now having but I’ve stopped eating a lot of my favourite things – crisps being the obvious, followed by salt which I’m not putting in my meals. I’m making salt-free bread, plus stopped eating cereal (loaded with salt), and reducing cheese as much as possible as it’s high too but honestly, with cutting so much out, I’m treating myself to a bit now and then.
This is the book I’m using mostly for inspiration on ideas, plus I’ve made a few bits from it (brownies, peanut butter cookies, pancakes) – it’s the No Salt Cookbook by David Anderson. Like with any lifestyle change (don’t think of it as a diet), do things slowly – start to replace things as you can, otherwise it’ll be too much. Cook things in bulk. Replace your normal butter for salt-free butter. Stop eating as much mentioned above, plus any ready meal (loaded with salt). Find your go-to’s – mine are:
- salt-free peanut butter on a Kallo rice cake
- I batch cook a huge lasagne (made with quorn mince, low salt pasatta, herbs, plus low-salt vegetable stock by Kallo – they do a lot of other things, like my rice cakes)
- breakfast – strawberries in porridge with the lowest salt milk available (I have soya)
- baked potato with low-salt butter and a lower portion of cheese than usual, plus lots of lovely veggies
- eggs and avocado on toast
- as mentioned above from the book, I make peanut butter cookies & brownies (absolutely gorgeous)
23rd Jan 2022
I’m still pain free, after following the diet for nearly 2 months. I’m so happy I can’t tell you! It’s a little frustrating not knowing whether or not this is the gamma or diet. I have noticed if I have a cheat meal with salt in, my face isn’t painful but I get the ‘sense’ it isn’t happy, so I take it easy – drink lots of water to flush the salt out, and be good with food for the rest of the day.
Got a question? Happy to answer anything related to TN as I know it can be scary… firstname.lastname@example.org
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