Niki

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Hi I have had migraine neck surgery In berlin a couple of days ago! Just wondered anyone here was had it done too? And how your doing? X

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  • Posted

    Hi Nicola

    How did they find out that the muscle was pressing on the nerve? Could you tell us a bit more about this? It's nice to find someone who has actually found a cause for their migraines. Most of us seem to be seeing doctors who treat our symptoms and don't do anything much to find out what is causing our migraines!

    Would you mind telling us a bit more about your symptoms so we can consider whether the same cause could be true for us?

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    • Posted

      Hi trudi

       I've had terrible migraines for about 25 years, since I was about 18 years! As I've got older they got worse and no painkiller would work! The only thing that would work are the trip tans but they are not good for you and actually cause migraines. So you can see I had nowhere to go. I found on enter net about migraine surgery and went for a consultation with surgeon. He gave me Botox injection in back of my head as a best!!! If you respond to Botox it shows that it is the muscle pressing on nerve and surgery hopefully will work. I an praying it will work for me! Day three after surgery but no migraine. X

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  • Posted

    Hi Niki

    I had the operation done in Berlin in October 2013 following a couple of courses of botox in London to pinpoint the trigger points in my head that worked successfully.  I had the corrugator muscles removed from my forehead - the doc accessed these through my eyelids.  The first month was awful for me, travelling back to the UK after the op was particularly traumatic and I felt I had shattered glass under my eyelids for weeks whilst the stitches etc healed and it was not pleasant at all!  I would say I didn't start to feel 'normal' again for at least 3 months if I am being honest but everyone is different and handles procedures in different ways but given I had suffered up to 15 days migraine a month for over 25 years I think I am well used to pain!  I really hope you recover well over the coming weeks/months - it will become easier.  A lady who was also having the op done that day had the same op as you PLUS the same as mine on the same day! Wow! Hands off to her for getting it all over with in one day, would love to know how she is doing!  If you have any questions please do not hesitate to contact me but I wish you well!  Take care x

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    • Posted

      Hi mo

       there was a girl having both done the same day as me, neck and forehead! She did look a poor thing the next day poor girl!! I so hope it works for her. I feel your pain with traveling home, it also was a nightmare for me. My head is totally thumb at the back and I can't turn my neck. I feel like my head is a smashed egg shell. Could I ask you if your migraines have stopped or at least a lot better since your surgery? So nice to talk to you. Xx

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    • Posted

      Hi Niki

      The first few days are horrendous aren't they, my eyes swelled up like golf balls and my face was black and blue and my forehead swelled up as well, felt really attractive!  Plus, coming through the airport at Berlin and flying back - well I must have looked a laughing stock despite my sunglasses I knew all the Easyjet staff were gossiping about me, wrongly presuming I had had plastic surgery for eye bags or something rather than for a medical reason!  I was just so happy to land back in the UK and get home to bed.  I did have a couple of migraines the first couple of days as the nerves settled and I was just so stressed with everything but now I only have about 2-3 days a month with migraines - a massive reduction from 15!!  These 2-3 are hormonal anyway so I know when to expect them so start dosing myself up with pills and make a conscious effort to try and relax/not stress (not always possible!) but the pills do seem to work faster as well, faster than before.  I look back now and am so happy I took my husband's advice to just go for it and get it done despite the costs, I don't think I would have had the confidence to do it without him.  

      So, now you are home, are you taking it easy and relaxing, do you work, if so are you taking plenty of time off and resting?  You do have to listen to your body and your body WILL respond negatively if you overdo it too soon, move about too much, so it is vitally important you rest and not overstrain yourself.  I started doing things too quickly and I learnt the hard way - my face swelled up like a football after about 5 days/bright red eyelids and sore, I was so worried, I had to email photos to the clinic in Berlin and the doc rang me to reassure me that I HAD to take it easy otherwise I would relapse - so take advantage of it while you can, not easy I know if you have commitments/family etc to look after but try your best!! Take care xx

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  • Posted

    Mo may i ask a question, when you say 15 a month are you like me and have Chronic Daily head pain, Not migraines as such but that dull thick head that eventualland does turn into a really bad headache/Migraine ? im currently on 12 imigran a month and i often bite them in half to a last longer but also try reduce the dose.

    Ive just had botox but as of yet not too sure. Ive also just bought some air purifiers for the house, as my day at work cosists of 80% homeworking, which may be a factor.

    Is your now ok did these Opps work, and please tell me they put you to sleep doing this. I think botox is far as i wanna go before i need to be knocked out lol

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    • Posted

      Hi, no mine were definitely migraines rather than severe headaches, I could go to bed feeling ok and wake up during the night/early hours with a thumping migraine vomitting etc with it.  I have spent 25 years feeling like a guinea pig - taking allsorts of meds/having tests and basically just going round in circles with the NHS.  I was also taking at least 12 imigrans a month (even this amount weren't helping) and a neurologist went absolutely mad at me for having that many and more or less said 'what did I expect as I was now suffering from rebound migraines from all the imigrans' so at that point I decided enough was enough and went down the botox/private surgery route, fell out with my GP and had to change practice.  I was nearly at the point of giving up I was so low but my husband gave me the guidance/push to go private and my life changed at that point - I really felt back in control.  I too work from home - if I didn't I think I would be unemployed with the amount of downtime I have had to had over the years with migraines, no employer would probably tolerate it so I just did my hours to suit how I felt.

      I do definitely feel the op has worked, as I said I was very poorly at the beginning while everything was healing and I had a couple of migraines at the start as the nerves have to settle back into position as there is no corrugator muscle there any more for them to strangle!  They did put me to sleep for the op (thank god!) as I wouldn't have wanted to stay awake for it!  I now have about 2-3 days at the very most each month with migraines now as opposed to 15, and these 2-3 are mainly hormonal so I just take an imigran and it goes faster as well!  A very expensive process but worth every single penny of being in debt for it - I just couldn't face wasting any more of my life, plus the pressure it puts on husband/family/friends - everyone says I am like a completely different person for the better (I must have been a complete b**** to live with!!).  I had to have 2 courses of botox before I convinced myself to go down the operation route 1) Because of the cost 2) Because I was scared 3) Because I was worried it wouldn't work, and it definitely kicked in after the 2nd course of botox - proving the op would work as it mimics the same effect on the muscle.

      Anyway that is me, probably bored you to death but if you have any more questions please fire away! Take care xx

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    • Posted

      I was offered Botox on my priovate also, but as the guy i saw also does the NHS i got put into the system and got it free, 36 jabs in my head second batch is 14th october.

      You sound very bad then, im aware of the rebound and do try to not take stuff, when i was on Methysurgide i didnt have 1 imigran in 6 months, but they stopped the drug...

      Do they not do the Op in the Uk then ? bet it wasnt cheap was it... i know the Botox in leeds was 900 first lot then 600 every re application ....

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    • Posted

      Hi

      No the guy I saw is private, doesn't do it on the NHS (google Migraine Surgery Centre) so I had to pay.  Eventhough they have a clinic in London that he comes over for to do the botox injections, he only does the actual surgery/op in Berlin unfortunately so yes v expensive once you add in hotel/flights to the equation as well!  But worth it!smile

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    • Posted

      The Imigran injections, which are like the epipens that diabtes suferers use, works better and faster than the tablets do.  My neurologist has never said I use too many a month, you can only use 2 in 24 hours though.  But before they sorted my meds out I was over dosing a bit on that as the injections were the only thing that gave me any relief!

      Good luck

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  • Posted

    Hi Nki,

    I havent heard of this before, but it sounds quite an invasive procedure, the main thing is how are you getting on now?  Has the surgery helped?

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