Group that focuses on AVM awareness , To build an informative group to help UK & Ireland AVMers and their families find the best Answers to their questions about treatments, doctors in the UK & Eire, self help and to press the powers that be for an increase in research and promote funding to find a cure or far better specific treatments

Location: regional-group
Members: 187
Latest Activity: Nov 13

AVM UK & Eire treatment Centre and Doctor/surgeon list

Hi Guys our AVM treatment centre list is growing ! If you have had treatment with anyone else please let me know. also if i have made any errors in the list let me know so i can amend list Thanks George
Mr Daniel Morris , University of Wales
Mr Dunaway ,Surgeon Great Ormond St Childrens Hospital London
Mr F Robertson,consultant in interventional and diagnostic neuroradiology, Great Ormond St Childrens Hospital London
Dr Glover,Consultant Paediatric Dermatologist, Great Ormond St Childrens Hospital London
Dr Nishikawa, Queen Elizabeth Birmingham ,
Dr Monaghan, Queen Elizabeth Birmingham
Dr Lamin. Queen Elizabeth Birmingham
Dr Rodrigues Birmingham childrens hospital
Dr Solanki Birmingham Childrens hospital
Dr Ashpole,Charring Cross London, Cromwell hospital
Mr David Peterson,Neurosurgeon, Clemantine Churchill Hill hospital Sudbury, Middx,Charring Cross London, Cromwell hospital London,
Mr David Peterson, Radiologist,Clemantine Churchill Hill hospital Sudbury, Middx,Charring Cross London, Cromwell hospital London,
Dr Maneesh Patel, Neurologist ,Clemantine Churchill Hill hospital Sudbury, Middx,Charring Cross London, Cromwell hospital London,
Dr Michael Gross, Neurologist ,Clemantine Churchill Hill hospital Sudbury, Middx,Charring Cross London, Cromwell hospital London,
Dr Joan Grieve. Neurosurgeon , National hospital for Neurology and Neurosurgery at Queens square, London
Prof. Bodo Lippitz
Specialties; Gamma knife surgery, Paediatric gamma knife surgery
Based at the Cromwell hospital, London

Mr Vloebergh,neurosurgeon,Queens medical centre in Nottingham
Dr Lenthall,neuro-radiologist,Queens medical centre in Nottingham

Mr Abouharb Neurosurgeon, The Royal Victoria Hospital in Belfast
Dr Rennie Neuroradiologist,The Royal Victoria Hospital in Belfast, Northern Ireland.

Mr Sorin Bucur, Hurstwood Park Princess Royal Hospital Haywards Heath

Mr Christos Tolias neurosurgeon ,The Cromwell Hospital, London.
Dr Nick Plowman,consultant oncologist Gamma Knife treatment,The Cromwell Hospital, London.

Mr Owen Sparrow, General Hospital of Southampton (Neuro).

Dr Clifton St George's hospital, Tooting South London
Dr Johnston St George's hospital, Tooting South London
Dr Rowe ,Royal Hallamshire hospital in Sheffield who specialise in NHS gamma knife surgery in the UK.

Mr. Mohsen Javadpour,Consultant Neurosurgeon,Beaumont Hospital , Dublin,
Dr. Paul Brennan Clinical Director of Radiology,Beaumont Hospital ,Dublin , Beaumont Rd, Dublin 9, Ireland Tel, 0035318093000

Discussion Forum


Started by mrs sarah major. Last reply by Rob Grant Nov 12. 13 Replies

Hi all I am trying to get travel insurance for my 22 year old daughter , who has had a bleed and has got inoperable multiple avms . I have been told by Thomson they can't insure her but they said to keep trying other company's .however when I put in the condition when trying to get quotes the sites don't recognise it . We only want to take her to Spain while she's ok because her symptoms are getting worse . So I was wondering if anyone has managed to get insurance .

Anyone having NHS problems?

Started by KaynGaz. Last reply by Rob Grant Nov 12. 41 Replies

We are coming to the end of our tether with the NHS and need some advise. - The NHS are failing to support us. - They failed to diagnose for 10 years. - They have performed some questionable treatment without consent.- We are struggling to get an appointment with a specialist consultant.Anyone else having frustrations with them?Anyone know the legalities within the NHS, we are looking to take this further.Any advice would be greatly appreciatedMany ThanksContinue

Little sod is still active!

Started by Chopsiegirl. Last reply by Lulu Nov 11. 2 Replies

Hello!It's been a while since I posted. I had embolisation in July at the Royal Sussex County Hospital. I was told that I had such a successful treatment that the craniotomy would not be needed.Since then, I've had 2 migraines (never suffered with them before) & the strange symptoms have continued down my right side ; with the left hand side joining in too on bad days.I had my follow up angio yesterday and unfortunately, they have to go back to plan A - the sunroof!This time, I'm not…Continue

Getting bad again

Started by Dave. Last reply by Dave Jul 30. 6 Replies

so after weeks and weeks of recovery surgery, more surgery the embolisation chemical Onyx had started to come out of my face, again has anyone any experience of this, as last time i started hemorrhaging badly.Am afraid this is happening again like last time, oh and NHS aint helping at the moment, only will if it starts getting real bad, and through past experience i had to be in the hospital and in the ward actually bleeding profusely before they would even bother thinking about surgery to stop…Continue

Comment Wall


You need to be a member of UK AVM AWARENESS & RESEARCH GROUP to add comments!

Comment by Jo Snuggler on November 13, 2015 at 4:46am
Just replying to Lynn (comment on Oct 5): I'm sure you've sought advice on this but in my experience what's happened is likely due to scar tissue on the brain from surgery. It hardens over time and can send rogue neuro signals which trigger seizures. This is exactly what happened to my husband. He had his craniotomy, was told by his Neurosurgeon that he no longer needed AEDs then, eight months later, he had a seizure from nowhere. Such a shock! Made us both so frightened that some of the AVM was still present. BIt wasn't, but felt terrifying. We booked in with a Neurologist who advised he should never have been told to wean off of the AEDs until at least two years post-surgery, if at all. So we've decided to just stay on them as there is no evidence to suggest this is detrimental to his health in the long term. Our chosen medication is Lamotrogine. Doctors originally prescribed Keppra but both my epileptic best friend and brother have had bad experiences on this drug: high anxiety, anger, fatigue etc. Lamotrogine seems to suit my husband, not for everyone though. It didn't agree with my brother. Each drug affects people in different ways - bit of a trial and error process before finding the right medication and dosage balance for you. Hang in there. You will get through this. Epilepsy feels like a big diagnosis but such a manageable one, for the majority. Alan (hubby) just cracked on with it. Figured it was just getting used to regularly taking meds, wearing an SOS bracelet (just in case), and keep work and insurance companies in the loop. Beyond that, life is no different. Take care .x.

Comment by Lulu on November 12, 2015 at 9:27am

Thanks a lot Julie. That's useful.

Comment by Julie Steedman on November 12, 2015 at 9:26am
I would talk to your GP as it was ours that told us James would get it
He has severe mental health problems because of his surgery so I don't know if that is why
Julie x

Comment by Lulu on November 12, 2015 at 8:57am

Thanks Julie. I have a brain AVM and get Hydrocephalus. I'm trying to find out if either condition qualifies me for the jab but the guidelines seem rather vague.

Comment by Julie Steedman on November 12, 2015 at 8:55am
Hi lulu
My son who has had his AVM removed gets a flu jab every year now but he has now been diagnosed with organic mood disorder from
Both surgeries
But he does get the jab
Julie x

Comment by Lulu on November 12, 2015 at 7:03am

Does anyone here know if AVM-ers are entitled to have a flu jab on the NHS please? The online information seems to be that those with 'neurological deficit' are eligible. But when I asked my GP's surgery they only seemed interested in people past retirement age.

Comment by Lynn on October 5, 2015 at 11:56am
I had two AVM's in my brain one at the back right & the other right temporal lobe. I have had brain surgery twice both have been successfully removed at Salford Royal Hospital with two great neurosurgeons Mr Daniel Holsgrove & Mr Patel. I was given the all clear after two years but had another seizure out of the blue in July this year. I can't remember anything about the seizure but I'm now being treated for epilepsy. I wondered if anyone else has any experience of this & what medication they're taking? I'm on Keppra at the moment but feel utterly terrible at the moment with daily headaches, tiredness & generally feeling unwell. Any advice would be much appreciated.
Comment by Emma on July 20, 2015 at 1:30am

Hi guys, I'm all new to this group but I'm after a bit of advice. I was only diagnosed 10 weeks ago today and was given very little info whilst waiting for an appointment to see a specialist.All I know is I have a large AVM in the temporal/occipital lobe region. I am on medication to stop seizures and migraines.

Before being diagnosed I'd planned a birthday weekend out with some friends at a spa, my question is are steam rooms and saunas safe for people with AVM's? I feel so frustrated that the neurologist at my local hospital just told me I had an AVM and he was referring me and that was it! No do's and dont's no info at all.

Thank you in advance Emma

Comment by Madere (dancermom) on June 13, 2015 at 7:53am

I'm reposting this here, as it can be confusing to receive a message and not know where to reply:

A message from Yogadatti to all members of UK AVM AWARENESS & RESEARCH GROUP on!

I have an AVM that can't be accessed and had had embolisations but they haven't eradicated told that it too small for gamma knife cos of the chances of doing more damage...been told 3 times that it won't bleed again but it does....this has been going on since 1997.... I am now 65 ..... I know lots will say , well at least you are older and have had a life....but it doesn't make it any easier ......I am at Queens Square seems they have more success in USA in getting rid of AVMs or is it we only hear about the positive outcomes?

Comment by Madere (dancermom) on May 13, 2015 at 3:25pm

Sorry, Natasha, I can't think of any UK AVMers with tongue avms. In addition to Debra, you may wish to friend Bek, from Australia. Sorry also about the Onyx. I hope you feel better soon.


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please help me my frends

Posted by Tomas on November 24, 2015 at 10:56pm 2 Comments

I have a few questions:
How do you feel awakened after head surgery
or severe pain after surgery?
thank you people!
Regards Zanas

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