Anyone considering surgery?

[Pompeyfan]

I'm getting so desperate now, I'm thinking of migraine surgery. I've completed the questionaire & been accepted for a consultation & the Botox Test. Just wondered if anyone else is going through this process at the moment?

[Juliapester3]

Hi, I've had migraine surgery in April 2011. I used to have 6-8 migraines per month mainly frontal so I had Botox test for 6 months (3 rounds) and saw an improvement so went ahead with the op and had my corrugator muscles removed. 18 months later and I now have about 3-4 migraines per month so a 50 percent improvement. When I do have a migraine I get numbness across my eye but the pain now comes up the back of my head/ neck. Now the explanation for this could be that my neck was a secondary site of pain which has now come to light or that my migraine has just found another pathway through my head but dr Muehlberger is not 100 percent sure. I can have another op at back of head but not an option at present. It's a big decision and I have no scars on my eyes but be prepared to look like you have done ten rounds with mike Tyson and although you are signed off for 2 weeks after the op the swelling takes about 10 weeks to disappear and during this time migraines were horrendous because the op aggravated all the nerves where the muscle removed. I,m not trying to put you off just giving you a realistic view of what happens!! That said I've reduced migraine by 50 percent but this isn't necessarily a 'cure' for everyone. If you have any more questions please ask I give you an honest account of the experience! Dr Muehlberger however is a very competent and knowledgable surgeon.

[Pompeyfan in reply to Juliapester3]

Many thanks for your reply. Is it normal to have 3 rounds of the Botox? The clinic implied to me it would be one round, and if it showed to have an improvement of at least 50% over 8 weeks, then I'd be offered surgery.

Were you ok to return to work after 2 weeks or did your own Dr need to sign you off longer? I work in an office but also visit elderly / sick people in their homes (social work), so computer work / driving & meeting people.

The op itself doesn't worry me, the the prospect of migraines being worse during the healing process is terrifying - having such a horrible time at the moment!

Sorry to ask so many questions.

[Juliapester3 in reply to Pompeyfan]

I had 3 rounds because the first round wasn't that successful but the following two were. The reason I went through this was because I wanted to make sure I was doing the right thing having the op as I thought it was a big step. I was ok to return to work after two weeks ( still in sunglasses I might add!) there was nothing else wrong with me other than migraine and swelling so if you can do your job with a migraine then you,ll be ok.in hindsight I would suggest being signed off longer or even just warn your employer that you may need a longer time to recover because the mistake I made was telling my employers I,d be back after 2 weeks and they expected me to come bounding through the doors completely cured which didn't happen! I would say try the Botox and take it one step at a time. If you have any other questions I,m happy to tell you anything in my experience.( I wish I,d had someone to ask before I took the plunge as its quite scary having a procedure done that's not recognised in this country) good luck

[teadrinker]

Hi there

I had no idea it was possible to have surgery for migraine & I think you're brave for considering it. I have been having botox for two years, it's really for managing chronic pain in my shoulder & face but has had a very positive knock-on effect on the migraines.

The benefits for me are : reduced intensity and severity of pain and reduced length of headache most but NOT all of the time when I get a migraine. At best I will realise I've got migraine headache and then before I can take any medication it's all gone. This has dramatically increased the quality of my life and need to take medication.

The drawbacks are that I still get migraines quite frequently and I still get the big ones with bad headaches, but not as often. The small migraines I can cope with (just feeling dizzy & spaced out with some mild aura symptoms). It hasn't been a complete cure but a very effective tool in managing them for most of the time.

The other thing to bear in mind is that botox doesn't have an immediate effect in some people. If I have it when I have no other pain I tend to suffer no ill-effects. If I have it when my pain is bad / in migraine mode it tends to cause a flare up of pain (I suppose because the muscles they inject are already battered). It usually takes a couple of weeks before I notice a positive change. Botox also makes me very very tired (though still able to function) for a few days, and as some of my injection sites are in my forehead I find the stiff and heavy sensations that occur as it starts to take effect a bit odd - but reassurring that it's working.

It took a few treatments for them to get the best injection sites to suit me, so if they only offer you one treatment & it isn't successful it might be worth pushing for another (I had it a few years ago in a completely different part of my face & it was a disaster just because it wasn't the right site).

Anyway, I know that my situation isn't quite the same as yours as you're having botox as a kind of diagnostic test, but I hope my experiences help you. Who knows, it might be all that you need.

good luck

[georgem in reply to teadrinker]

Yes,definitely possible and have to say it was really effective for my sixteen year old son.He had Botox for 8 months before that,so we had a pretty good idea that the surgery would work.I wrote a blog about it to share his experience with other migraine sufferers .We haven't looked back,though I know each person has to see which treatment will work best for them. .Check it out if you are interested migrainerelief.org.uk/blog/

[georgem in reply to teadrinker]

Yes,definitely possible and have to say it was really effective for my sixteen year old son.He had Botox for 8 months before that,so we had a pretty good idea that the surgery would work.I wrote a blog about it to share his experience with other migraine sufferers .We haven't looked back,though I know each person has to see which treatment will work best for them. .Check it out if you are interested migrainerelief.org.uk/blog/

[Tipperary]

I just had the migraine surgery in Berlin with Dr Meuhlberger. Here is my story - have suffered with migraines since I was a child. I am 45 now. Last year they became chronic with greater than 15 days per month- always felt on the right temporal and moved down to right occipital (neck used to pop out of alignment each month). The Triiptans worked initially but stopped working once the migraines were chronic. I went to see Dr Meuhlberger in Feb 2015 in London and had 50iu of Botox into the two trigger points. I had some reduction in pain, severity and duration of migraine went from 3 days to one day. I had surgery in Berlin on 13th April to my right and left temporal and right and left occipital region. I arrived to surgery at 1130 and was under anaesthetic for two hours. I woke up pain free and left the hospital at 1500 that day. I felt well enough to go out to dinner that night with my husband. The next morning I returned to the hospital and was seen by the doctor and had my dressing changed. I then went sightseeing for the day in Berlin and flew back home afterwards. I am still pain free with no migraines, although my neck is stiff and I will be off work for two weeks sick leave to recover. My right eye is quite bruised looking but isn't sore. I don't need to take painkillers. The doctor thinks I shoukd have a very positive response as it was easy for him to see what was causing the pain and to resect it. As I said, so far I have had no migraine. The throbbing I always felt in my temporal area has disappeared so I am extremely hopeful that I might be cured. I will post again if the situation changes. Everything was very smooth and efficient and this surgeon is very professional. You need to arrive the day prior to the operation and leave a day later. You need someone to travel with you for insurance purposes.

[Tipperary in reply to Tipperary]

day 8 today post surgery. I don't think I have had a migraine yet, although I did have some post op pain at the weekend (and wasn't sure). I really think the surgery is going to cure the pain. Let's wait and see.

[ohmygawdscarlet in reply to Tipperary]

Hi Tipperary!

Sorry this is my first time posting on this site... Your story is very similar to mine... I'm about to go for a consultation this Saturday with Dr Meuhlberger in London, to hopefully have this procedure as soon as yesterday! I was just wondering how you are feeling after the op? How are your migraines, level of pain, are you able to work?

I hope you are feeling great anyway ❤️

[Tipperary in reply to ohmygawdscarlet]

Hi. Wishing you the best of luck with the surgery. In relation to my own surgery, the throbbing in the temporal area is gone and my neck has stopped popping out of alignment but I am still getting some migraines and associated neck stiffness and blurry eyes etc. Pre the op, I had headaches for five out of seven days whereas I have gone approx nine days in between them and I think it will continue to improve. Last week I had a pain free migraine which I cleared with andrews liver salts. I have stopped prescription meds and trying out the andrews salts for the next month to see how I get on. I find if I can clear the acidic feeling in my stomach very quickly, then I can abort the migraine. You will like Dr Meuhlberger - he is very professional and has been very quick to respond to all my questions since the operation. In summary, I am happy I had the surgery and am still hopeful I will be fully cured at the six month mark. I will keep you posted and hope you can do likewise.

[Aylingireland in reply to Tipperary]

Hi Tipperary I am considering migraine surgery, how are you now 2 years post op?

Many thanks x

[Tipperary]

Ps yes, I am able to work and have taken no sick leave since the two weeks after the surgery!

[KateArn79 in reply to Tipperary]

Hello! I've just found your post and noticed it's from a few years ago, I'm just considering the same surgery, but like you said it's a big step and I'm trying to get as much info as possible... I've read positives and negatives, lots of people have said how horrendous the recovery is. I just wondered how you have got on since the surgery? Any info greatly appreciated!! Many thanks

[ohmygawdscarlet]

Thank you so much for your reply ❤️

[KateArn79 in reply to ohmygawdscarlet]

Hello, I've just found your post and noticed it's from a few years ago, but I'm considering this surgery st the moment with dr muhlberger, and I just wondered if you went ahead with the op and if you did how did you get on?? Hope it all went well and you're now migraine free!!

[Cydney123]

Hello everyone,

I had migraine surgery on 4th June. I'd had 4-5 migraines every month for 35 years and struggled over the years to find something that would help and to live a normal life. I tried all the prophylactic drugs the NHS had to offer, and found Triptans offered relief when an attack came. But I was taking far too many just to keep going at work and home: they have a rebound effect causing migraines if you take them regularly so I was trapped in a vicious circle. So no drugs provided a solution in themselves.I also tried massage, helpul to a point, chiropracty (completely usless), cranial osteopathy helpful at times, homeopathy (no help at all), ditto acupuncture, changes in diet. I am a yoga teacher so I practice regularly but this hasn't really changed the pattern of migraines either.

Then I went to see Dr Muehlberger. I had had Botox previously and knew it provided temporary relief for me.

I think my migraines were caused by inflammation in the nerves at the back of my neck on both sides. I know everyone is different. I had the operation in Berlin: on both sides of the back of my neck and the corrugator muscles above my eyes removed.

Apart from 3 days in the 3rd week post op I have been migraine free since. I suppose it's possible as the sceptical London Neurologists suggest that this is a placebo effect. But I'll report back in another 3 months. A nurse in my GP practice put me on to Dr Muehlberger as she had the surgery herself and she has now been migraine free for a year.

So in conclusion, if the tests with Botox treatment seem to give you relief from migraine I would say it is worth a go.

It has transformed much life.

A word of warning: immediately after surgery you will probably need to rest. Keep applying ice to your forehead and eye area that will really help with the swelling and bruising. I stayed in the hotel Diana in Berlin. They couldn't have been more helpful, providing us with a continuous supply of ice cubes!

And I'd say take at least 3 weeks off work though I am older 60, so maybe not as robust as some of the younger people having surgery.

Hope this is of some interest.

Good luck everyone

Alice Pickering

[HBpencil in reply to Cydney123]

Hello Alice. Just came across your post. Trawling the forums for information that could be of some help to me.

Migraines are fairly new to me..Never even had a headache up until 2years ago after being diagnosed with fibromyalgia..l have had them periodically up until recently following a virus which took me into hospital with a raging headache and very high temperature. Meningitis was suspected so l was given a lumber puncture. The vestibular headache began a week later and has not let up at all, just got worse. I have been told it is not due to the LP and given anti- dizzy drugs and diclofenic which has only made things worse. Like you l have tried so many things.

But yet to try Botox. Not sure how to go about this. Do l see a neurologist first?. (The one l saw on NHS 2 years ago said l had chronic daily headache)

I did also pay to see a pain specialist who gave me triptans which do nothing.

I do get a very stiff neck and lots of dizziness so would the Botox be in that location?

I am happy to hear you have had success with Dr Muehlberger. Are you still pain free after 10 months?

Hazel.