Something to consider?

I think one needs to read such stories, and consider them, but I don't get exited about any breakthrough stories that come along. Having said that looks very interesting indeed:
http://www.dailymail.co.uk/health/article-1328544/How-having-brow-lift-cured-migraines.html

I think anything new is worth exploring, in case it might be useful at some time in the future. Many such new treatments work for some people, even if they are not right for everybody.
It worked for that woman - so this is already good news.

Yes it's interesting. But its not going to work for people who haven't had success with nerve blocks, botox, or other trigger point procedures in the past, which I find a lot of people saying they aren't finding relief in, on this forum.

Typically people who don't have success with those aren't suffering from muscular source migraines (ie. muscles pressing on nerves).

But if you are then it might be a good option, more studies need to be done.

I put this on my FB group. was in our daily paper.
Not exactly on general offer though.

P

These things take time, just like other ideas which seemed new and untried only recently but now become more common practice. For example there is a possibility of Botox, or nerve injections which I have been discussing with my neuro recently. So, as the more treatments become available, the more options we can try and see what works for each person.
Thank you for your feedback - makes sense.

It's the same surgery I had, just a different entry point. My surgeon went in through the eyelids.

As you might remember from my previous posts I had moderate success with it. Not as much as I had hoped for, but enough to give me back some quality of life.

P.

Very interesting Petzi - how invasive was your surgery, and how long was recovery after the procedure? I take it, you have it done privately?
Are you likely to have repeat of the procedure.

Sorry about all the questions, I did not see you original post on the subject.

I also think that when any new procedures come, the surgeons initialy practice on us, the patients, and so at first the results might be unpredictable, so maybe it is better wait a while until docotrsy get better at it.
I heard the same thing about injection in the nerve at the base of the scull, or Botox: at first docotrs did not have anough practice, so the results were mixed, with time they are getting better and better, specially in special clinics so this is getting to be a viable option to consider.

I have been offered Botox on a training session. Right before Christmas.
think I will pass.....

Mini,

sorry forgot one of your questions: No, there will be no repeating the procedure. The frowning muscles are gone and cannot be removed a second time. The same goes for the arteries. Once they are cut they are cut for good. The procedure is a one off.

P.

Oh Pen,

don't give it a pass. Try it out. It can't hurt. Even if they muck something up it will wear off after a couple of weeks. Who knows ... maybe it works for you.

P.

I would but for a couple of things Petzi.
1. It is the day of my daughter's 30th Birthday.
2. He said himself it is close to Christmas and I am "not just around the corner".
3. They have never done this before. I dont want to be a guinea pig.
4. I can have another chance in January.

We talked about it and decided to wait for January.

Thank You very much for such comprehensive explanation, Petzi.
It all sounds quite invasive, but sometimes it is worth trying radical solutions, becasue unless we do, we will never have radical improvemnts. I also agree that it is worth trying Botox. I also know that injection can bring good results, but each time might be different, so even if it did not work first time it is worth trying again.
I am pleased that you had it done by somenone who has much epxerince in such procedures, since this is such a vulnerable area.
Great news that NHS has paid for it - did you have to notify them in advance of the operation, and get their agreement first?

Funny you mention frown muscle - ever since I was little I have a very, very deep frown line between my eyeborws and every time I have migraine it gets deeper and deeper. I wonder if it would make difference if I had it done as well. I am open to any solutions provided they make sense.

And on a lighter note: did the operation have any cosmetic affect as well?
This would be really nice side effect for a change - usually we only get bad ones.

Pen,

it this case it makes sense to do it in January.

P

Wow, Petzi, well done for persevering! It just shows, that we need to be more assertive when we demand any treatments and then generally NHS comes up with the goods and can be excellent. Of course it can also be awful, but I have friends in many countries and I know that not system is ideal.

One thing is certain, we need to be well informed and do lots of our own research as well as demand more from our own doctors, and change them if necessary.
Sometimes it takes time to find the right people, but when you do it is all worth it.
I think, at the moment I am coping with my head, but if things get worse, I am open to any suggestion.

I will leave watching the video today as my tummy is a little wobbly and I am very squeamish. But I'll definitely watch it later.

The reason why I asked about cosmetic effects, is that I noticed that my forhead seems to be sliding down south, towards my nose lately, specially when my eyes get puffy with migraine I hardly have any eyelids, but no way I would do it for cosmetic reasons only. I hate pain and try to avoid it.
Thank you again, Petzi,
love
M.

mini, the surgery is only available privately at the moment and with the cutbacks will not be offered on the nhs.
botox is offered as a one off at certain clinics altho you can have that privately of course and then the occipital nerve injections are available as a course of tx on the nhs.

altho with all the goverment cutbacks we were told it will not affect healthcare thats a load of ********* and neurologists are having their appointmnets halved so we have got alzhiemers pts, ms, mig and stroke pts etc having to go from instead of 3 months reviews on drugs to 6 months and in the meantime gps will not do anything as the neuro prescribed them.

its criminal what cuts are coming in, so expensive mig treatment will not be increased in the meantime! im just in the middle of a campaign challenging the cuts to neuro and its ********* awful what im finding out!

Yes it's interesting. But its not going to work for people who haven't had success with nerve blocks, botox, or other trigger point procedures in the past, which I find a lot of people saying they aren't finding relief in, on this forum.

Typically people who don't have success with those aren't suffering from muscular source migraines (ie. muscles pressing on nerves).

But if you are then it might be a good option, more studies need to be done.


____________________

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What is your campaign Dawn?
I was fearing that as soon as this governement gets in the cutbacks (and lies) will start. Rememebr the wholesale hospital closures which devastated the NHS, and the whole mess the last conservatives left. ONly now we have began to recover, new hospitals began to be open, waiting list much improved, the rot might beging again (thorugh the back door).

IT really looks bleak, as so much is done behind closed doors, and we the patients will know last.
I had and excellent relationship with my neuro so far, and easy access if I needed him, and now I am not sure of anything any more. WE need to be more assertive, I am sure.

I am convinced that most of the cuts, are much more to do with political "causes" and beliefs, then with the real need. They just want to change the system, on principal.
Sorry, for the rant, I am in a bad mood. The best thing in this counrty is NHS, eveyone agrees, and they cannot wait to mess it up.

WE need to be very alert and try to protest when we can, and make much noise. I used PALS in the past and they were very helful, as well.

for the cut backs to neuro campaign i need to pm you but the cut backs within the nhs are unbelievable. i cant name names but one hosp trust has now informed pts that they can have one cataract on the nhs the other has to be private, waiting times for joint replacements are doubled and a list of treatment no longer available has been sent out. basically with the pct being done away with the gps are being given control of their own budget. they aim to referr as few people to hosp as possible and have targets for that with financial rewards. if at the end of the year the gp fund is in the red the gps themselves have to make up the shortfall but is they are in credit the gps can them selves have the excess. health checks are being offered at gp clinics which all seems well and good but for every pt checked they get paid and for every pt called back for say a bp check( most of which are) they gat paid a gain. based on their findings the goverment know how healthy each clinics pts are and the % likely hood of strokes, heartattacks, diabetes, asthma, heartdisease is so they can allocate what should be the correct amount of funds for that clinic.
to work within the nhs theses days is soul destroying if you genuinely care about the pt and getting the best treatment for them, your hands are tied and completely controlled by the financial directors who sit in offices saying how much can be spent and earn the same as the medical consultants for doing it.

Dawn, you only confirm what I suspected.
Our GPs are already making a killing, and allowed to retire at 55, on almost full pay for the rest of their lives, and now they will also have all power to decided, who gets a treatment and who does not - how on earth they can decide that, if they are not specialist themselves.
The way it looks it is privatisition by the back door, where the only people who will benefit is the ones who already indecently well paid, with averege GP earnigs in hundreds if thousdands of pounds.

Any privatisation is the death of quality of service. Look what happened to our rails after privatisation, it is a mess, unmanageable expensive mess. How can we allow for this to happen to our beloved NHS.

I think being aware of thisl helps, thank you Dawn, as I will know how to talk to my GP next, when he is difficult about any referrals.

The moment the doctor begins to treat his job as a buisness the greed begins to rule and everything goes to pieces. One thing is certain - who suffers? The patient.
For one person to gain someting in the money game - the doctor- someone need to loose something: the patient. It is as simple as that.

Do let me know by pm about your action.

BTW, I wonder if mind to break your lines , as it is difficult for me (and many other people here) to read big blocks of text. Thanks.

I have been able to look at the video - and it is really interesting and not gory at all. I wish I could have it done.
I am so sorry Petzi, that you did not get complete relief, but as we all know any relief is appreciated when you suffer from migraines and I hope that perhaps, you are now better able to control the pain when it comes.

What amazed me is that my pain is exactly in those places just as they are demonstarted. I can feel with my finger the nerves in question and often press on it and massage it when it hurts, so I am strongly suspecting that this is where my problem is.

I liked the website as well, as it is not hardsell and from what you said it seems to have been well tried in Germany, so they must have much more experience. Can I ask you why you prefered to have it done over there, arther then here in London, as it seems more convenient and iif they are the same people.

Also how did you find out whom exactly to approach in NHS if you want the approval from your PCT to have it done privately? Is there a special departament, and how it is called.
Sorry for so many questions, but it all looks very promising.

Mini,



There was no choice as the surgeon in question is German and performs the surgery on all his patients in a small private clinic in Berlin. Everybody travels to Berlin from all over Europe. He only comes to London to do consultations and to administer the Botox test.



I don’t know the reasons behind this, but I strongly suspect that it has got something to do with the quality of English hospitals. German doctors are very suspicious about the standards over here.



When I approached the NHS it was really a cold call and I asked my way through various departments until I ended up with the right person to talk to. If I would do it again I would ask my GP beforehand and ask him to point me in the right direction. When you get in touch with the NHS refer to Art. 56/49 of the EU Treaty. From what I understand the NHS will pay for treatment abroad if treatment cannot be obtained in the UK. Obviously they will want to look at your medical record and check if you really have explored all the other options available. Surgery should really be the last resort.



Initially you will have to pay for the surgery yourself. The surgeon will demand full payment before performing the surgery. You will then invoice the NHS and they in turn will reimburse you. At least that’s how it worked in my case.



The fee for the first consultation at the clinic and the Botox test I paid for out of my own pocket.



I hope this helps.



P.

Thank You very much Petzi - this has been very helpful indeed, you are very kind to be so patient with all these questions.

I do agree with you, that susrgery must be the last option, but I am so sick of taking medicines, as they all have s/e and the preventative that works for me makes me quite sleepy and tired (and who knows whate else!).
At the moment things are not too bad but I have another condition Ancolysing Spondylitis, which can trigger off bad migraines for me and I had a bout recently, and this is what made me think of some more radical solution, this is when I came across this article.

I will definitely wait.