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
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 www.beaumont.ie
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
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
Lately i have been receiving treatment from the NHS for my facial AVM, my AVM started many many years ago but was so small i never bothered, but in the last few years it got to a point it was causing issues, so was referred by my GP to so called NHS specialists.Anyway over the last few months i have had some work done, as i was told i had to, so went ahead with embolisation to my lip where the AVM was, it was huge tbh. So had ONYX pumped in for 5 hrs + under general, all went well, but the next…Continue
wonder if anyone in the UK has had the Chemical OYNX used for treatment of their AVM, mines is not in my brain but facial, i know usually that after embolisation with OYNX the AVM is usually removed, but on my second day surgery to remove the OYNX filled AVM my surgeon basically reiterated what he has always said that there is a high possibility you will not survive, so i declined treatment and am now left with this in my face.Just wonder if anyone in the UK has had any experience with this yet.Continue