Quick update. Decided to investigate migraine surgery. Seems pretty common in the states, lots of studies / literature/ testimonials, choices of surgeon etc.
I can’t get to the US now obvs unfortunately, so flying to Germany on Thursday to see a Surgeon who does over there. Usually has a London clinic but closed currently due to covid…
Gonna see what comes of this…
Has anyone here had it? It’s basically nerve decompression surgery.
I’d be happy to share what I’ve found out.
Note from admin: This member disappeared just before having surgery and has not returned to tell us about its efficacy or progress. Had this been a silver bullet I’m sure he’d have been back to tell us about the success. But he has not. Be very wary!!
If you Use Search function there are 50,+ entries listed. Must admit I have never heard of it so my first port of call as always would be Dr Hains website, dizziness-and-balance.com. check out ‘Surgical Treatment of Vertigo’ and ditto of Migraine. That’s where I looked. Sorry but this little Android tablet refuses to do links today. Maybe he/she’s got a headache too eh.
Have you seen The video or read up on it? It’s very interesting. How the procedure started. Was by chance. I’ve spent hours now researching it and going through the data etc.
Has the root cause been discovered by any neurologist? Is there any med that works? Deffo not for all, which is why there are so many of them.
They don’t claim to know any root cause, but state that some nerves (there are 3 main areas, i clan name them now) are being compressed by muscle or other things cause the cascade that leads to migraines and then auras.
This isn’t brain surgery btw, that would be a whole other thing.
These guys claim that have 90pct success rates on suitable candidates as discovered using nerve blocks or Botox in very specific areas (not the general way the neurologists do them)
Success means elimination or 50 pct reduction. They have 20 years of data to back it up.
I was very sceptical when I first came across it and still am that it will work for me.
What I do know is the guys that do it are no cowboys, they are renowned plastic surgeons from Harvard etc… and it has deffo worked for thousands.
I don’t understand why this isn’t even discussed / debated etc. It’s supported by a number of neurologists stateside, but the theory is it’s like turkey’s voting for Xmas…
I have no idea whether it will work for me. I’ve spoken to 3 people over the last few days from the U.K. 2 of them call him/the procedure the work of miracles… these are normal people like u and I btw.
One it didn’t work for and she’s obv gutted…
Sorry for the long reply, but Am I missing something?
It’s expensive yes. And insurance won’t cover… but that can be a reason?!
The diagnotics simply don’t go down to the required level of detail to be sure. And crucially, they don’t monitor inner ear vestibular response in vivo, over time, so impossible to say if the peripheral organ is not having a bearing on stress levels in the brain and whether that might be causing the migraine threshold to be breached.
In this environment of uncertainty, I wouldn’t undertake surgical procedures you may later regret if it turns out the currently prevailing consensus is wrong or it simply doesn’t fix you.
However, with regards to general migraine (not the focus of this site btw!), I see you are right wrt to a general effectiveness of surgical procedures against migraine (my comments about this not being a ‘normal migraine’ scenario notwithstanding):
How is this anymore crazy than taking a cocktail of pills for years on end, looking for a magic combination that may eventually work, and living with side effects at the same time…
Or the countless diets, holistic, physio related treatments that there is only anecdotal evidence for.
I’m not saying it is suitable for everyone, even me, and may not be the thing for MAV (it’s the M bit it looks to resolve), but deffo warrants further investigation.
For me, main issues are headaches/ migraines, with auras including vertigo at times, light and noise sensitivity, DP/DR.
Maybe this isn’t the correct forum therefore?
Here is a short interview with the guy I’m seeing to assess.
In turns of reputability, these aren’t some crazy back street surgeons… they are supported by neurologists. If I’m honest, I’d question the abilities some of the neurologists I’ve seen in the U.K., and given I go private, I’ve had access to some of the most “reputable” around.
i sound like a I’m supporter of this, which I’m actually not, currently anyway. I just don’t think people should be so dismissive without education on the subject.
As I say, not for the many or even the few, but why not worth a look?
It’s an interesting contribution for sure, but quite often you can have too much intervention and lots can go wrong with surgery and have unintended consequences.
I completely agree the treatment protocols aren’t usually a silver bullet or quick fix, but where VM & MAV are concerned they are the only scientifically determined treatment protocols that have broad consensus, both amongst ENT’s, Oto-neuro’s and Neurologists.
Does a study exist of outcomes VM patients who’ve had this procedure? That would be interesting (the brave people they are!).
Just trying to be the contrarian voice of reason here to dissuade people taking unnecessary risks or at least go into something fully prepared for failure, knowing the risks and uncertainties.
I will ask about data on MAV / VM, as you say, this would be very interesting to see.
Re broad consensus between all, sorry that’s not my experience at all. I have had different doctors / specialists contradict each other and even dispute the existence of MAV as a real diagnosis. I would be happy to name who I’ve seen… all suitably expensive…
Most agree that these things are on a spectrum, presenting differently to different people, and no one knows the real cause, let alone the best way to treat it. There is no proven course of treatment that helps everyone, again, that’s why forums like this exist.
I’m yet to meet 2 people who have had identical experiences, and I am therefore open to ideas and ‘alternative’ treatments (all tried and tested and evidence based).
I think it’s fair to float possibilities and suggestions and people can research themselves.
It’s tough Rob. Agree you have to give every option serious consideration. Just listen to the doctors though. The really good ones have strong discipline when it comes to limiting potential harm during treatment.
Do tell us how it all goes, whichever way you decide. I’m on the fence about a major surgery myself, though it’s not migraine related (a light spot of spinal fusion, possibly with a side of bolting together the pelvis - though like Foogoo that dish isn’t served often and for good reason). Why have just one disabling illness when you can have more? So, I’m curious to see where you go with it. I think exploring all the options is very important - even the scarier ones. We have to keep fighting for quality of life. And we need to do it with our eyes open.