I woke up with a stiff neck in March 2020. This eventually resolved but has morphed into chronic neck pain, stiffness and headache.
I have a constant heavy dragging feeling combined with waking up sometimes 5 nights in a row with splitting headaches.
I’ve had cervical denervation, Botox, local anaesthesia and steroid injections in trigger points. All work temporarily then it all comes back again. I don’t get classic migraine symptoms such as nausea or photophobia but I get a weird pressure feeling over the bridge of my nose and my eyebrows are painful, as is a point on the back of my skull and behind my left ear.
I’m considering seeing Pr. Muehlberger who carries out the Botox test and corrugated surgery. I can’t find much info on this and am worried that it’s some kind of weird sham treatment. I contacted the secretary and they responded so quickly it made me suspicious. I’m not used to being contacted back so promptly.
Does anyone have experience of this? Is it even a recognised procedure?
Thank you
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Fairfax1968
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I had the surgery with Dr Muehlberger several years ago. I had it in 3 sites - the corrugator muscles, at my temple, and around my occipital nerves at the back of my head. I’m afraid that it did not make any difference to my migraines, and my eyes took a long time to heal properly. My NHS neurologist does not believe it would work as migraines are as a result of cortical spreading depression in the brain, rather than compressed nerves. I wouldn’t recommend it.
Thank you. Just to make you aware, if you do decide to go ahead, you will likely have to travel to Berlin for the op. The clinic is in London, but that’s only for consultations and the Dr only travels through once or twice a month. That means that you don’t really get follow up care after the op. I did go back to see him a few months afterwards, but he was quite dismissive when I said it hadn’t worked and I was having problems with my eyes. He did however waive the last of my payments so I ended up paying £6000 instead of £9000.
I have tried this route, or least to the point of having the trial botox injections. I had injections in the eyebrows and back of head. They are not cheap. £800 for 6 injections. I was told to wean myself off triptans as the botox starts to work. You are allowed over the counter pain killers. I watched a swish film which explained it all. As the botox kicked in you knock off the triptans and one relief seams gradually into the other.Well, it seemed to work at the front but the pain was still all over the back of my head, like nothing had happened. I managed to knock back to taking just a quarter of a triptan, but still waited patiently for the botox to kick in properly so I could cut the triptans out altogether.
At my next appointment I was sort of blamed for the treatment not working, because according to professor, it wouldn't start working until I'd completely stopped the triptans. This contradicted everything that had been said in the film about how it would work. I don't know if it was just an excuse or if that is indeed a fact. ( I've never been able to verify this online).
To put your mind at rest, it is an actual cljnic in a very smart hospital. He is perfectly pleasant. His secretary Wendy is very friendly if a little fussy.
I can only say it didn't help me too much. I felt the goalposts were moved during treatment about how it all should work. If you do go, I would clarify what exactly you need to do in order to get the process to work. And 800 is very expensive in relation to other botox practitioners. Good luck.
I think you should trust your instincts and do what you feel comfortable with. Wendy is very approachable and you could chat things through with her. Equally you could go for a chat only, but obviously you would have to pay for that. It is expensive for the injections but you don't have to have them at the time if you'd rather not.I suppose I'm glad I tried but only because it ruled it out.
My only reservation is that uou tried botox and it didn't work and this procedure mimics the effects of botox, so I suppose you could ask for clarification as to how professor has deemed you suitable. Good luck.
Thanks PingezOn balance I think I am going to cancel the appointment and see if I can get referred to UCLH complex headache clinic. I feel I need a multi disciplinary team as that’s what has been missing in all the treatments so far.
It all seems a bit “one size fits all” approach with the migraine surgery centre and it worries me that it’s not available freely in the UK.
I don’t actually believe that his secretary has spoken to him about me so quickly, literally within a day of my email. I don’t think consultants get back that quickly to their secretaries about patients. It’s just all too speedy and it’s worrying me.
My ndph/ chromic migraine started in may 2020 having exhausted everything newcastle upon tyne neuro can offer and having paid somewer in the region of 5 k for ajovy/ botox private appts etcIm hopeful that ive found a good neuro . Dr Giorgio Lambru from St Thomas hospital london .
I paid £290 and spoke to him last Saturday- he recomend drugs ive not had up to now whilst waiting as he says im a candidate for a neuro stimulation implant - on the nhs. My instincts are good and I knew instantly that professor and wendy were not for me. But newcastle neuro has to formally refer me now. Last December he said he would in april. When april came I was devastated when he said as i was coping so well (acceptance of the new normal which is horrible) wed best “sit on our hands “ for six months and I had to stop looking for a miracle cure.
I waited 3 more months and during a bad bout of days of permanent score of 7-8
(I can function on 4-5)
I contacted Dr Lambru myself. What a lovely man who really listened and empathised well. Fingers crossed.Good Luck to you. Never stop looking for
Thank FrancescaI’ve just looked at his website and he seems to be what I am looking for. Like you, I’ve paid thousands on private treatment but not had the MDT approach. I’ve seen neurologists but not specialist enough and got nowhere. I’m going to call Dr Lambru’s office tomorrow and make an appointment. My pain started early 2020 too and I’ve not been free of it for longer than a few days since.
I requested a referral to UCLH earlier this week as found out they have a specialist head and facial pain team but my GP says he has to first apply to the local CCG to ask if they will fund it as it’s out of our CCG. That will take months and I’m desperate.
So frustrating as it’s so hard to find a private clinic that can look at the whole picture. I hope Dr Lambru can help. Did you need a GP referral or could you just book?
I just booked myself but in order to treat me he needs a neurologist referral to prove I’ve exhausted all a local neuro can do. All done by email to his p a michelle . Had to wait 3 wks . My neuro recomended him or a dr Matharu. I googled them and Matharu is private work only and had one good review and one terrible. Dr Lambru only had good reviews and is attached to St Thomas.
He was so so nice i could have wept. Ive worked in nhs all my life until this forced retirement. All referrals were denied because of covid so i guess u were same. I have a knack for knowing which docs i warm to instantly and would trust and others I know id not let anywhere near my grown up kids 😂
U dont say your age? Not homonal is it?
If it could be, professor anne Macgregor is the expert same hourly rate as Lambru. Best of luck keep me posted and I will keep you posted . Vidyamala burch meditations on youtube can bring my score down from an 8-6 . Mite help you. Xx
Dr Matharu is at UCLH and that’s the one I’ve asked for an NHS referral to. I can’t wait any longer though and will contact Dr Lambru.I’m 49 so hormones probably involved somewhere but it all started so suddenly with this stiff neck I think there was initially a mechanical cause which has now affected the nerves.
I’m going to contact the neurologist I saw in the NHS and ask him to refer me, unless they will accept a GP referral. I’ll ask tomorrow.
Strange i wonder of the pa is on annual leave as I emailed her aft my appt to ask if i had to forward my letter from him to gp and local neuro and she didnt reply so I just did .
I think Wendy emails him and he does get back pretty quick, so that wouldn't worry me so much. But you must do what you think is best. After all, you aren't dismissing it completely. Just for now, while you have other avenues to explore.
See a great chiropractor. Sounds like a pintched nerve. There are more notnsongreat chiropractors than there are great ones. So, check wirh your local Facebook group and ask who the best chiropractor is in your town.
Ahh, have you tried avoiding all forms of dairy (it inflame the body)? After 11 days of giving up all forms (even butter), my 27 year battle finally ended).
There are lots of plant based alternatives to dairy.
You more than likely have a pinched nerve and the only doctor who can help is a chiropractor. The sad thing is, your reg doctor/hospital will never recommend a chiropractor because they don't believe in using medication.
There are lots of chiropractors out there, some great and some not so great.
Before I learned that dairy was my trigger and according to my numerologist, dairy is the number 1 trigger for most migraine sufferers, I would see a chiropractor and always walk out of his office pain-free.
Dairy is inflammatory, so when your nerves get inflammed, they get pinched and depending on where the pinch is, depends on what hurts.
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