My names Amy. I have Fibromyalgia & have just been up to the Walton Centre in Liverpool, to see their clinical headache specialist lead there: Dr. Nicholas. C. Silver.
( Professor Con. Neurologist)
Who is leading the forefront into this illness & brain disease.
The Walton centre, is a new cutting edge, research Neurologist Outpatients centre based in Fazakerley, Liverpool.
I needed to highlight anyone to this gifted & exceptional doctor, who really both listens & understands the condition as best as anyone's likely to can.
He has just finished five years of intense research into new FMRI, brain imaging techniques & wanted to go back into clinical practice to help patients with this awfully cruel, debilitating illness.
His consultation was over two hours long, I.e,(methodical, patient, kind, thorougher), taking a step by step approach to full medical history & physical exam.
Followed by Brain MRI & full blood panel, he's the most caring & knowledgable doctor I've ever come across. I'd almost given up any hope up till now of finding someone who cares enough about patients & has the knowledge & medical acumen to back it up.
If anyone wants more detail on him, do get in touch with me. I will be under his care for the next two years at least, is his opinion.
To exhaust & discuss all lines of new treatments.
His opinion is that the symptoms relate to undiagnosed: Chronic Migraine Didorder & FM is just a outdated term for the umbrella of symptoms, rather than the disorder in itself from which Ibe been suffering from my entire life.
With Migraine Syndrome, it is a genetic inherited brain disease that causes the multiple of symptoms. Which wax, wane or becoming increasingly frequent over time if left in treated & underdiagnosed,( as many sufferers are in the current NHS system).
I've had symptoms since a child, but his diagnosis fits go a T, there is no mistake his oppinion are correct. The MRI of the brain, was just a last final measure to rule out two other types of rarer genetic brain disorders.
One thing I would say also, is that; movement,( however small), nausea, increased head pain, brain fog, painful periods, muscle weakness are all part of the wider disorder.
Just felt I had to get his name out there for people to get help when all else seems lost & hopeless.
A Rheumy diagnosed me in 2014, after suffering terrible, debilitating symptoms for years. But there was no follow up.
I'm finally in the right place, with the right mind & caring human being to help.
So, I urge any of you suffering severely out there. Get s referral to Dr. Nicholas Silver.
Best wishes
Amy
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AmySholay
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I just googled him and he also does Private at the Spire in Liverpool and Wirral but I doubt GPS will do referrals to him instead of Rheumatologist just for fibromyalgia but it's worth an ask isn't it.
Yes, it's worth asking. Keep asking for better treatment & your get there in the end. Better health, requires dogged grit & determination & persistence if nothing else.
I just refused two years ago to give up & ust accept my lot. The more I read & researched online about Fibro, everything stank of brain chemical abnormalities & neural excitability.
And I was right as it turns out. If your spectrum of symptoms is far & wide & increasingly severe. Then you MUST, repeat MUST, see Dr Silver.
It must have been wonderful to be able to talk with someone so knowledgeable and be given time to discuss it fully. Can you tell me if you went privately or were you referred by your GP.
Interesting post....thank you for all that info.....x
Yes, it was. It felt like I could finally let go & accept I was as ill as I felt but hadn't up to then been given permission to feel grief, anger, shock, whatever. It's taken over 24 years to get an answer, which is nearly my entire life time, as I'm 38 now.
Regards, the referral to doctor Silver. I did it via my usual GP request, the NHS route. Not, private (through The Spire, at Warrington).
Though it took repeat & firm requests, they didn't want me to see anyone other than Rheumatology. Which, were of limited use & not so fully aware of what a awful condition it is. So, you must persevere, don't be put off by indifferent or apathetic attitudes. Be polite but firmly I distant , is all I'm saying.
Privately an appointment with Dr Silver, is around £475 a session.
But unlike most highly skilled & experienced Surgeons/doctors of his standing & calibrate/prior training. Once, he returned to clinical practice post PhD research,( which is very recently). He wanted his majority of patients he sees to be NHS patients. He only does one or possibly two days a week private patients, to get money for his continuous research programmes & working with other neuro surgeons across the UK & Beyond.
The private appointments have a different Sectutary to the general NHS appointments under his : PA ,(Sheila Marsh)
His specialist/ headache clinic, runs at The Walton Centre in Fazakerley, two or three days a week I believe. You can get a 15 minute tube train from Liverpool Lime Street, followed by s short walk across the road from there.
I hope this helps. Any other questions just pop me another message.
This does give sufferers of this debilitating illness a little bit of hope, proving, at last, that the world of medicine does recognise Fibromyalgia. I am genuinely happy for you Amy, please do keep us informed of your progress. The link to Migraine makes perfect sense, I have suffered horrendously since the age of 6 from them and have always felt that the 2 are linked. I wish you the best of luck.
Nice to hear from somebody new. It's good to know my message is reaching people, however few. That makes me really happy!
I will keep you informed of my progress of course.
I have sufferers with intense Migraines since about 10, so I was young too looking back. But no one every told me anything about Migraines before meeting with this lovely, humanely kind doctor.
Do pop me a bell in future & I'll keep you up to date on any developments.
Thanks for that Amy, a lot of what you say makes sense to me as I was originally told I had some form of weird migraine before my fibro diagnosis. I went to see a female neurologist in Fazakerley Hospital originally so I may mention him to my GP at next appointment. x
Ok, Ramjet. Good luck with your enquires regarding Dr Silver. The fact he's just out of five years of research into biomedical FMRI imaging techniques for brains, means he's also really keen to apply what he's learnt in this time.
Imaging the brain is going to be the way forward in future along with genetic marker/ blood profiling I believe.
Guys Hospital London is doing research into genetic abnormalities of proteins in Migraine brains, as opposed to healthy people's trials & statistical data
I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:
Thanks Ken & for the Walton Centre link. Aparently, there is a TV Channel for the work they do via Channel five. But when I checked this on returning home, I couldn't find the documentaries in order to watch. Perhaps, it's something only available on Wirral TV & not down south.
I will check out the links you sent me now, Cheers Ken.
Hi again AmySholay if you cannot find the programmes they may be available on YouTube? I have seen a couple but I am not sure where it was? I do watch a lot of YouTube so it may be on there? Good luck my friend.
Hi Amy, thanks for the post. I too suffer from migraine and have done since I was a teenager (55 now). Only recently diagnosed with Fibro but I have had symptoms for many years. I thought there must be a link because my migraines are worse during a flare.
I'm sorry to hear, you like me have, have been suffering with migraines most your life to date.
As far as Dr Silvers concerned: Migraines are the abnormal pathological processes within the brain causing the pain & all the symptoms & Fibromyalgia is the umbrella term for those symptoms. It's confusing I know. But I feel he's right on the money in terms of his assessment of these complex conditions.
I urge you to get a referral to see him if you can.
He's started me on a prophalatic approach in terms of medications,( which, is a preventative approach for chronic Migraines rather than just for individual & acute attacks. I have severe migraines everyday of every month without respite, this is why I'm on this stronger medication to begin with.
Which GP's can only give out on an experienced Neurologists recommendation anyway, as they have no knowledge of these drugs or how to treat or recognise the symptoms of these medical conditions.
I've been given Sine-met at night for four months,( which is a medication usually given for Parkinson's Disease, at present. If that fails he can resort to various : Trip Tans or other anticonvulsant or TCA medications.
This is in addition, to also having use of an electrical device called a: GammaCore machine,( thrice daily), for four months).
If proved useful, he can apply for extra NHS funding on my behalf to extend the treatment duration, for up to a year.
He is legally & ethically obligated to trial at least three drugs for up to three months each on me, before resorting to secondary lines of treatment measures:
That is: starting on a repeat course programme of Botox injections in the (,head, kneck & face). The procedure takes 31 fine needles to be administered each time into these areas releasing the toxin in the aid of numbing the nerve & releasing the over contracting corresponding muscle. It only had mild risks in comparison to surgery & is the next step after medication trials.
It often has an accumulative effect over time as procedures go & is an option, if the medications trialled haven't worked enough as hoped.
If this still doesn't lesson symptoms then: Occipital Nerve Stimulation Surgery is the next option,( there by planting a set of electrodes & an attachment pace maker for the brain in your head and neck area, for you to regulate & control stimulation a yourself.
The last ultimate resort if this doesn't work, is invasive, risky & experimental major brain surgery, (to cut away muscle from inside the scalp & forehead, & back of head), in order to relieve pressure away from over stimulated Trigeminsal nerve stations.
This is a last result & one I hope I don't have to face & come to making s decision on. It's a long way off still.
Very few brain surgeons are experienced, knowledgable & skilled enough to undertake this type of surgery, but Dt Silver is, of course.
The operation takes a very experienced set of surgery professionals working together to complete it(.i.e, 2 plastic cosmetic surgeons & 2 brain surgeon, plus Aneathetist of course.
To find such a team is very rare anywhere in the UK, but Silver has contacts & fellow researchers & headache specialists he works with both here, Europe & across the Atlantic.
If I ever have to make the decision eventually, I'd want him to be the man to do it. Because he's both meticulously methodical, exceptionally gifted as a highly skilled Brain Surgeon but equilateral important, he is a very genuinely kind and evidently, caring doctor.
He's a very rare man indeed, like finding gold dust medically speaking!
So yes, Dexter. In answer to your question, there is indeed hope out there & things to try in terms of treatment. Nothing, works for every one & in all cases of course.
Migraines are yet a cure able condition. I've had migraines since childhood & now they are daily & unbearably severe. So, if anything works for me, it will for anyone I'm sure.
In Dr Silvers oppinion, Fibromyalgia is the collective term of umbrella symptoms caused by the brain disease & disorder that is known as: Chronic Migraine Disease.
It is the abnormal Migraine Physiopathology with the brain & nervous system that is causing all the pain & debilitating symptoms.
Do get a referral to Silver via your GP, if your current lines of treatments are failing you.
I wasn't going to accept my lot easily & had to fight for over two years to even get this referral to see him. No one did it for me, so like me you must push for change.
I'm not saying your GP is that bad, but mine are unfortunately. It is the distinct lack of current knowledge about these complex medical conditions, as well as an apathetic & uninterested attitude, which has stopped me all these years accessing treatment & possibly a cure.
Well, no more! I've found my guy, & I'm sticking to him like glue & will try everything he asks of me. Because frankly, he's the only hope I have of ever finding any positive lasting, change.
All the best & I hope this helps inform you with regarding you with more information than before.
Yes, it is drastic and a last result of course. I absolutely, hate the idea of any surgery, (especially major cosmetic in this case). A lot can go wrong even post surgery, as well as in it.
Not many of these operations have been done yet around the world, so evidence is still rolling in. Every migrainers brain, has a different & unique set of working features & internal irritated nerve pathology mechanisms. Which means the same op doesn't work to ease pain for all, but the success rate is still generally about 75%.
So yeah, there's a lot for me to consider. It's not easy to make a decision. I'm hoping Botox before that will be beneficial, once I've gone through his drug trials. But I know me, due to my symptoms severity & the fact I'm always in the rare minority of cases seemly to everyone else I meet. So, I can see the decision having to be made in future. But I hope not, life is nothing without hope is it? However, small & implausible.
I wouldn't even consider surgery, if the head pain wasn't so bad, at every hour of every day without any let up or respite.
Even within the last months, I've been Losing all strength in my legs when standing & any movement at all. Even standing up and walking across a room or turning around can cause a major migraine, I am that sensitive to movement being a trigger for worsening pain & nausea. So, even mild exercise is out of the question & daily functioning markedly impaired.
I have a rare form of Migraine known as : Transform migraine. Which essentially means symptoms become more disabling & worse with time. With most people, this doesn't happen of course.
Perhaps this is due to the fact not only of genetic inherited factors, but also that I sufferered major brain seizdures & trauma in early infancy & childhood, (.eg., gran Mal seizures at 16 months till six years old & a rare form of chicken pox with multiple organ involvement at aged 3. Looking back, it's only determination & luck why I survived as long as I have.
I'm sure all these factors have played a major role into my present severity of Migraine daily state.
As well as the terrific stress & strain of suffering do badly for nearly 20 years before diagnosis last year.
It's all taken its toll on me physically & I am sure made things accerate & worsen other than they could of been, if diagnosis & treatment had been more forth coming. But it's happened, how it's happened. Looking back on missed opportunities for treatment could send you mad or bitter. I'm not succcoming to either, I'm quite proud to admit.
Anyway, I'm glad for you your migraines are so few & far between Dexter. They make life miserable, when they're are weekly, even worse daily or hourly.
All the best for the future & wish me luck something eventually eases things for me.
Hi Amy I'm in Liverpool I've been having trouble getting referred any we're did see a rheumatologist who basically gave me pain killers and of you go see you in 6 months I would really love to see this doctor as I find getting any help impossible like a lot of FM patients any information would be great
Yes, I urge & recommend you to get an appointment with Dr Silver, as soon as possible.
He's the best person in the UK, to help you move forward.
I got my referral under the NHS & not, privately, with him. And remarkedly , he was very quick to respond.
My next appointment with him is in May.
Do keep in touch & let me know how you go with him.
I'll keep you informed as to developments my end also if you'd like.
Some times when I go up there, I stay there over night in Aimtree hospital, because I just can't get return train travel back on the same day. I live in North Wiltshire.
If you ever want to meet up for a coffee or a chat at some point, I'd be happy to support & talk to you. I don't know, if you live anywhere near Fazakerly or not.
All the best for your future & just know, help is out there via Silver.
Hi Amy. I realise this post was 6 months ago but I've just come across it as my GP has referred me to Walton fibromyalgia clinic. Don't know who I'll see but after reading this I hope I see Dr Silver. How are you getting on now Amy? 111Angel x
I'm in the process of trialling lots of medications recommended by Dr Silver at present. Whist awaiting for Botox treatments by him later on next year if these first line treatments all fail. Migraine patients have to try a few meds before accessing Botox as part of the NHS system.
I'm getting on with him fine, but am really poorly right now. I only see him once a year, but it's the nature of the illness why that is. Because migraine, isn't cure able once it becomes chronic largely.
I didn't know they had a fibromyalgia unit up there, that's good to know. I hope you find help whoever you do eventually see when you go up there, but a consultation with Silver would be reccomended. Perhaps when you see someone at the clinic you could ask them.You would need a GP referral to see him but he doesn't keep you waiting very long like all other referrals Ive had to date trying to see other specialists.
I got my first meeting with him in 3 months, amazing considering it took me over a year to see a rheumatologist. And over another year before I got my actual fibro diagnosis.
So yes, see him if you can. If you can't, ( I doubt that will happen), then do contact me again and I can give you more details about the condition or what treatments he suggests, if it's of interest or of any help to you. There are some useful websites I could suggest also to look up more information.
If you do see him, please don't tell him about this website.As I don't wish him to see my messages, as their personal as well as perhaps a little embarrassing by praising him.
I was just so relieved to find someone who understood these conditions when I wrote my first messages that's all. After years of searching for a doctor with answers & the knowledge to give them.
Their are other excellent headache specialists in the UK. Lambru at Guys & St. Thomas's in London for instance. But there aren't many neurologist that specialise in this area in UK and you need to see a professor level, (top of the learning tree of neurologist), to get help & understanding of these complex conditions. Of which, Silver is one.
I wish you luck at the Walton Centre and let me know how you go. Any other questions, you know where I am.
Hi Amy, I know your original post was from 2 years ago, but I just wondered how you have got on since then. I have just been referred to Dr. Silver and am awaiting my first appointment. I have fibromyalgia and chronic migraine so was really interested to read your post. I’m feeling pretty hopeless at this point as the migraine frequency has really ramped up and combined with trigeminal neuralgia, I just about reached breaking point yesterday. Your post gave me some hope. How have the past two years been for you? Has there been much improvement? Thank you
My experience wasn't as great as yours TBH. I think he's knowledgable, but I've seen other good neuro's too in other hospitals who are more friendly and approachable than he is. I'm on the fence, after having a few appointments and not feeling much better than other neurologists managed. I also always feel rushed in the appointments. No time to add in my thoughts. While I know it's NHS, it leads to some incorrect conclusions.
Did I read this right that he also thinks FM is just part of having migraines? (and not a distinct or actual diagnosis in its own right?).
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