Migraine surgery

Non-Pharmacological Treatment "Alternative" Treatments
21

@flutters thanks, I totally agree.

I have pencilled in mid Aug for the op in Berlin, and will think further over the weekend before I finally decide, but I’m deffo leaning strongly towards it, having met him and gone into detail.

What your thinking about does sound major, and it’s a big decision.
This is not really that major though, it’s outpatient stuff, with a back to work guide of 1-3 weeks, depending on your job.

Remember this is not brain surgery or anything like that. They liken it to carpal tunnel stuff on your wrist. Obv it’s in your head so looks and sounds more gruesome and I’m sure it won’t be pleasant. It’s a risk / reward thing… and I believe the potential benefits out way the risks… which are typically the surgical type e.g anaesthetic, etc. Obv the biggest risk in my mind is that it doesn’t work…

There is also the cost to consider…

I have spoken to a number of people who for them it has given them their lives back, their words not mine. One is a surgical nurse for the NHS, and so she knows the ins and outs and i respect her opinion.

I want to stress that my biggest problem is chronic/ daily migraines / headaches, and the auras, including dizziness, although awful, are secondary.

I think most people on here vertigo is the main issue, and so maybe I’m on the wrong site?

I am seeing Dr S also, and the treatment I’m having currently (candasartan) is to treat the migraine, which he says causes everything else…

I have tried a whole catalogue of meds, injections, alternative treatments, therapy etc, none of which have worked for me, so I’m not going into this lightly or as a first choice.

Again, I don’t want anyone reading this to think I’m recommending it, I’m not. Everyone has to do what they think is best for themselves. However, as stated previously, I do strongly believe that people should be aware and informed, so they can make their own choices.

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22

Like you, I’ve been there, failed that ad nauseum. This is definitely intriguing. My history of surgical complications of the maiming variety would keep me away, but the procedure itself is very cool. Go with your gut instinct. And good luck.

Feel free to use this as a forum to explore your thoughts or debate yourself. I know I’m interested in the thought process whichever you decide.

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Just curious have you tried Botox.( Have not seen your video yet, apologies ! ). Botox might work in the same principle as the surgery to numb the nerves.

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Most on here panic more about the vertigo and indeed the ensuing imbalance caused but as the condition is called ‘migraine associated vertigo’ most also experience migraines and are as chronic as you just with the added dizziness… As the traditional preventation treatments for both classic migraine and MAV are virtually identical you should not be that far out.

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My biggest symptom was imbalance. Dizziness and most of the worst migraines were controlled by Amitriptyline.

Rob do you have imbalance?

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26

@GetBetter Botox is the test to see if it works (has to be done properly!) and apparently should give an 80% reduction in pain, and be c95% accurate as a guide. It can take up to a week to kick in, and then slowly start to work over a period of weeks, and last up to 2 months.

Given I’m having the procedure in around 2.5 weeks, I decided, and he agreed to go ahead without the Botox test. This was a joint decision based on a number of factors, including the good expectation it will work on me based on my presentation, and his experience. Also, I had nerve blocks just once a few years ago and my pain went away totally, but only for an hour until the anaesthetic wore off (which should have been noted by my neurologist as a good sign, but he just said it didn’t work)

Also, most of the surgeons in the US don’t do the Botox test, either using nothing, or nerve blocks to give an indication of success rates.

Maybe I should have had the Botox and waited until September, but there are a few other personnel reasons why mid aug is better for me.

@turnitaround
I would say I’ve never had vertigo, but over the years I’ve definitely had dizziness and imbalance, which actually was my only symptom lasting 3 months, when this first started four years ago.

I went from GP, to ENT, to neurologist, who was very firm in a diagnosis of VM, and prescribed me Topomax, which was truly horrible. The dizziness then subsided but the migraines kicked in (which was much worse), and never really went away.

I would say I still have slight dizziness, and if I turn my head quickly, it’s like everything else then has to catch up, which Dr S says is part of the MAV / VM

I do think that all these different labels of MAV, MV, NDPH, Chronic migrane, ON etc, aren’t particularly helpful and can be very confusing, when looking for treatment.

There are many neurologists and others who think it’s all the same thing, and just presents differently in different people, and these labels just identifying the symptoms. They are used to try and get some consistency, and for the insurance companies, which intend to agree with. It’s all just a spectrum…

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@flutters thanks for that.
I’ll try to keep my posts shorter…, easy to go overboard on detail.

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I think you will find when @GetBetter asked about you trying Botox he was referring to using it the traditional way, as a migraine preventative, over a sustained period of time. Lots of chronic migraineurs have had great success with doing just that. Try reading @MNEK18 or @Jojo65 posts.

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@Onandon03. I’ve tried it once and didn’t work, not sure why my neurologist didn’t suggest doing again. He did the more general Botox, 32 injections all over, rather than targeted around the nerves of the 3 main trigger points.
If I were to ever have again, I would go to someone who did the latter. It makes much more sense!

The other people referred to, for whom the surgery worked had the general Botox numerous times and it didn’t help them really also apparently…

Maybe neurologists with no real expertise in anatomy, shouldn’t be the ones doing it?

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With Botox I think it’s a case of Location, Location, Location. You need a neurologist with expertise. And it’s very different from the cosmetic variety too.

Oh I was under impression they only carry out procedure on people, 50% was it, who passed, the Botox Test. Presumably that meant saw improvement?

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Mr Neurologist was Dr Mark Weatherall… look him up, expert on headaches apparently.

Re Botox, yep, that his this guys particular method, as mentioned US guys dont use it. At least 50% improvement is the goal. The Botox is the targeted one as mentioned, not general

It is a bit unusual to go ahead without, but I pushed for it due to a number of factors.

Time will tell if correct decision.

32

Botox is my friend, too.

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33

Thanks Helen, this was what i intended to ask.

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34

I remember there were periods I was desperately trying to seek out PLF surgery because I thought it would end my nightmare like a magic bullet. I found a doctor willing to consider it too. I ended up holding off because of a few tiny improvements, changes I noticed. But it was a close run thing. That was a really good decision. I appreciate this procedure may not be as invasive, but still believe its worth telling that tale.

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@turnitaround,

hopefully I’ll be back to work in a few weeks.

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36

what does Dr.S think of the surgery ?

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Hi @GetBetter, Not informed him yet. Prob won’t approve.
I’ve noticed all these guys pretty much stick to their own discipline… all think their right and all quick to talk down the alternatives…

My neurologist thought that the physio was a waste of time, the physio really didn’t recommend taking pills. The nutritionist was very confident she knew what was going on etc…
As @flutters said, you have to go with your gut sometimes (that was another one btw, one doc was convinced leaky gut :roll_eyes:)…

If it works, I’ll let Dr S know…

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38

ha ha…you shld do the botox and wait and do the surgery. My 2 cents. I know you said some personal reason prevents you from doing so but do reconsider the botox before surgery route. You have had this for a while and 2 months is nothing in the grand scheme of things.

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39

I was thinking that, too. The conservative approach is best. In the last three years I’ve had four surgeries. Two had serious complications. One was to fix what could be fixed from the least damaging procedure. It looks like I have another big one on my plate. I’ll try the next step along the start conservative path - even if it wastes time and money. At least it can’t maim me, again.

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@GetBetter, and @flutters. You are probably both right. It would be the more cautious route. I can still do that, not all pinned down etc. I have another call with him to run through again, and will decide from there.

@flutters sorry to hear that, sounds like it’s been pretty rough. Was this all back related?

Rob

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