Microvascular Decompression: The Ultimate Fix for Structural Trigeminal Neuralgia

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Today I am talking about brain surgery.  It’s a terrifying thought, having someone faff around inside your head, but it’s also an important thought.  Because if you have a blood vessel touching your trigeminal nerve, this could be your ultimate cure.  You could get out of this life, the one where you’re constantly worried about when the next attack is going to hit, the one where you’re avoiding certain foods because you have to chew them a lot, the one where you can’t go out in the wind or the cold because it sets you off.

You could enjoy your life again.

Australian scientists have shown that chronic pain can physically change the brain.  We have lower levels of glutamate, which is a chemical messenger between brain cells and can help regulate emotion.  What this means is brain cells can no longer communicate in their usual way, and so the ability to process positive emotions is reduced.  So that feeling of being tired and unmotivated all the time?  That’s the effects of this change within your brain.

One of the first steps taken to diagnose and categorise your trigeminal neuralgia should be an MRI – with contrast.  This will allow a neurologist to identify any structures that might be touching or compressing the trigeminal nerve – things like blood vessels or tumours – or any damage to the nerve itself.

If you’ve got a blood vessel touching your trigeminal nerve, I’ve got good news for you: you can get microvascular decompression!

Microvascular decompression is a really cool surgery wherein they go in and put a very specialised sponge material between the blood vessel and the nerve where they are touching.  Once they’re no longer touching, there’s no longer a reason for the trigeminal nerve to go off, effectively curing your trigeminal neuralgia.

But it’s brain surgery, and brain surgery is scary!

In most cases, it’s not actually brain surgery.  The blood vessel and the nerve often touch outside of the brain, sometimes within the skull, sometimes outside the skull.  So while they may be entering your skull, they’re not actually touching your brain.  That remains unmolested.

The sponge they insert into your head is a very specialised one.  It’s not like a kitchen sponge, or like a sea sponge, it’s a very special kind of medical sponge, and it’s very very sterile.  Because of course it’s going somewhere bacteria must never go: inside your skull.  It’s also very small.  When you’re working in a confined space, you don’t want to add too much bulk to existing structures, because there’s nowhere for other structures to go.

It’s carefully placed between the blood vessel and the nerve, right where they are touching, and they stitch the sponge onto the blood vessel.  All blood vessels have several layers of tissue, and the stitches are only placed through the outer layers.  The stitches aren’t placed all the way through, so the inside of the blood vessel remains perfectly smooth, and you don’t get any accidental bleeding.

My best friend who has typical trigeminal neuralgia has just undergone this procedure.  She had an artery twisting around her trigeminal nerve and touching it in two places, so she has two sponges in her skull!  She had her surgery on Monday morning.  She went home on Friday.

For now, the right side of her face is numb, because of course the trigeminal nerve has been faffed about with.  She occasionally gets itchy teeth.  But she is pleased to announce she now has complete taste back on the right side of her face!  This numbness is expected, and it’s expected to continue for the next few weeks to the next few months, and she has commented that it’s bearable because she knows it’s only temporary.

She’s also said it is amazing to be free of pain.

The Importance Of The Outside

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I moved house three months ago.  Well, I should say, we moved house three months ago.  We moved from a small, 70s built house with a very small lawn (2x3m, with a 1.5x10m run down the side) into a large, 60s built house with retrofitted double glazing, a catio (a patio that’s fully enclosed to allow cats outside time without them being free-roaming), three lawns, multiple edged and established (but overrun and very confused) gardens, a rose bush taller than the house, and two raised garden beds fenced off down the back.  We have apples and pears, an olive tree (I still don’t get this one), so many magnolias of different colours, roses popping up out of trees, and a loquot.  We also have a fig tree stump with a lone fig stubbornly growing on it.  Oh, and a grape vine!

This garden is a mishmash of things and it is very overgrown with ivy and jasmine and weeds and I have never gardened before in my life.  The closest thing I had to a garden before now is my small collection of succulents who, despite all neglect from me, have continued to survive.

Now I have an established and overrun garden to manage.  And I never knew how much I needed it until I had it.

I grew up in a large, old, draughty villa with a 1/4 acre section and a veggie patch.  There were trees I would scale all the way up until I was too “cool” to do so (around aged 15-16, I was a slow bloomer), a cinderblock I would use to contain any fires I lit just because I could, and an overgrown section down the back end of the garden that I could hack at with my trusty home made wooden samurai sword (whittled out of a branch courtesy of one of my friends).

My holidays were spent at the beach.  We had a small, lockwood holiday home within 5 minutes walk of a quiet beach.  There was no TV, no dialup internet or world wide web (in fact, some of this took place before those days!), and mobile phones were still a pipe dream.  We had to make our own fun.

What I’m trying to express here is that I grew up in and around nature in every part of my life.  I was a hippy child, a wild child – give me some rocks and I’d scramble up them faster than you could say “that’s a big rock”, and I would try to climb every tree.  Most of the time I was even successful.

As I got older I withdrew from the outside more and more, finding solace for my teenage angst on the internet and the people there.  I had an Angelfire Page – actually I probably had about five.  I was onboard when MySpace first came out, and Live Journal.  I was on Yahoo Groups and DeviantArt.

I stopped going to the beach for the holidays.  I stopped going outside.

I moved into a tiny little cupboard of a room in an awful little apartment with only concrete and horrifically overgrown “gardens” to speak of.  Then into a house with a single tree and a lawn you couldn’t even swing a cat in.  Next up was a house with a bush back section and a small raised lawn, then apartments.  I became “modernised”.

That little wild child who lit fires in the garden and ran on the beach and screamed into the wind because it was fun just … withered.  And died.

Looking back knowing what I know now, I suspect a lot of that was to do with my fibromyalgia, the incredible stress of working full time in a highly demanding job, and the stress and anxiety of being with a narcissist.

Regardless, I neglected an important part of me, that little hippy girl, and it took moving to this house to realise it.

She’s slowly coming back, that dirt grubber, with every step I take on soil without shoes and every weed I pull out without gloves.  With every time I sit in front of the open doors to the catio and breathe in the fresh country air and admire the green that creeps everywhere.

She is slowly coming back, and with her, I become more grounded.  More robust and at peace with my life.

The importance of the outside is, to me, immeasurable.

Deep Tissue Massage for Fibromyalgia

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My acupuncturist had a family emergency last month which meant he was off for about three weeks.  During that time I had some fairly considerable trigeminal neuralgia flareups and, in a pain induced panic, decided I must see someone … just not someone with needles.

I looked around online for massage therapists near me and stumbled across this one particular one that had good reviews and wasn’t overly expensive.  I got an appointment for the next day and went in, hoping some massage would ease the fire in my face.

It didn’t.  Oh boy did it not.  What it did do, however, was loosen some knots that haven’t been released in decades, knots my shiatsu massager just would never be able to reach.

Now I’m not talking about your normal relaxation massage where you go in and they kneed you for an hour.  No, I’m talking about the massage where the therapist actively finds the painful spots and then digs her thumbs into them for an hour.  It’s painful.  I make some truly spectacular noises and groans of “oh god” while she’s doing this.  It’s amazing.

I left feeling battered and bruised and nauseated, like I always do with any body work that releases tension, but after a few days I felt revivified!  I went back the next week.

This time she discovered even more knots.  See, now that she’d begun relaxing the superficial layer, she was able to find the deep knots, the ones that cause problems.  The ones that haven’t seen the light of day (or rather, felt the “tender” touch of a massage therapist) for decades, nay, eons!  Well after this session I felt so light headed and dizzy I couldn’t quite function for the rest of the day, or the next three days after that.  She’d knocked something loose in my back that had really done my head in.

I’ve just revisited her today and I am definitely noticing an improvement in how my body feels, despite the pain from coming off Tegretol (another blog post in and of itself!).  I’m also noticing an improvement in how my body moves, which is really rewarding.

My theory is this:  I have a lot of knots.  I have a lot of muscle tension.  I have a lot of muscle fuckery.  This will all be amplified by fibromyalgia, causing me both excessive pain, and excessive stiffness.  If I can work out these knots, release this tension, and improve my muscle health through deep tissue massage and gentle exercise, this will reduce the level of pain I will experience from fibromyalgia, because there is less muscle pathology.

So far I think it’s working?  It’s a bit hard to tell, what with exams, the stress of losing a friend, and coming off Tegretol.  To be honest I’m just throwing everything I can think of at my fibromyalgia and trigeminal neuralgia and hoping something sticks, so identifying exactly what is having exactly how much of a positive impact is going to be a bit tricky.  Here’s hoping the deep tissue massage sticks!

Either way, it’s making me feel better, and that’s the most important thing right now.

Stepping Down on Tegretol SUCKS

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It’s been almost a week since I reduced my dose of Tegretol from twice a day to once a day, and my body is still acclimatising.

The first day was excruciating.  I couldn’t think, had no balance, everything hurt (including my face).  My skin was overly sensitive and every sensation was unpleasant or painful.  My team took one look at me and said go home.  I sat down and did some work, but then gratefully took them up on their suggestion and went home to curl up on the couch and watch my latest high value distraction: Mind Hunter.

The second day was a bit better.  I no longer felt like every part of my body was on fire with fever aches.  I didn’t have much balance, and in fact I sat back from interacting directly with the horses during our practical session due to this, but I was more alive than day one.

I’m now almost a week in.  I’m pretty sure I’m coming down with a minor cold or something of that ilk, as I’ve got the heavy duty fever aches, extreme lethargy, and overall fogginess.  While this is a symptom of my fibromyalgia, it’s usually reserved for ‘coming down with something’ rather than ‘you’ve done too much’.

I will not be getting acupuncture this week, as my acupuncturist has had a family emergency.  I’ll see if I can get two acupuncture treatments in next week or the week after, whenever he’s back, to hit the trigeminal neuralgia hard.  It’s been acting up a bit on one tegretol, and I’d like to settle it back down.

As you may be able to see, my thoughts are still sluggish and somewhat disjointed.  I’m going to blame that on the plague rather than the tegretol, and have a nap.

Acupuncture as an Adjunct Treatment for Trigeminal Neuralgia

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Since being diagnosed with trigeminal neuralgia, it went from bad to worse.  Even with the maximum dosage of Pregabalin and a thrice-a-day dose of Tegretol, the pain in my face was an almost constant 8-9 out of 10.  I like the following pain scale, because it also shows my mental state.

15 Pain Scales (And How To Find The Best One For You) | PainDoctor.com

Not only was I reeling from the Tegretol, but I was almost incapacitated with facial pain, which somehow is so much worse than pain in something further away.  I was taking huge quantities of medications designed to control this pain and it just wasn’t working.

So I put all my hopes on a blood vessel touching my trigeminal nerve somewhere so they could perform microvascular decompression, which is this really cool brain surgery where they stick a little sponge between the blood vessel and the trigeminal nerve and voila, around about 7 years of no pain!

The MRI showed up nothing.  Everything was fine.  Nothing was even vaguely touching the trigeminal nerve.  There was no explanation for why I had trigeminal neuralgia.

I had a complete meltdown.  I was really banking on the MRI showing something, and it didn’t.

The next day I booked in for acupuncture.  I have now had three acupuncture sessions, and I’m just about to go to my fourth.

After the first acupuncture session my pain went down to a 2-3.  I stopped taking my midday Tegretol, so I was down to twice-a-day Tegretol.  After my second acupuncture session, my pain went down to a 1-2.  I was moving that week, so every once in a while I would have a flare up to a 7.  The CBD Living Freeze (they don’t pay me for this shout out) has been a godsend for these flareups.  I roll it all over my face, fan the eucalyptus and menthol fumes away from my eyeballs (it buuuuuurns), and my face feels normal again!

I have a mild worming pain across my zygomatic arch right now, and a bit of a bone eating sensation in my jaw, but the consistent pain rarely gets above a 3.  As I said before, I am just about to go to my fourth acupuncture session, and once my nerves have settled down from that I shall drop my Tegretol down to once a day.

My goal is to completely come off Tegretol and regain my brain and my waistline!