UK AVM AWARENESS & RESEARCH GROUP

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UK AVM AWARENESS & RESEARCH GROUP

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

Website: http://www.butterflyavmcharity.org.uk
Location: regional-group
Members: 131
Latest Activity: yesterday

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 www.beaumont.ie

Discussion Forum

UK Driving Licence - Queries

Started by Martin Brooks. Last reply by Martin Brooks Mar 29. 11 Replies

Hi all, Firstly thanks for the great information provided on this site which is a great support method.My question is regarding driving in the UK, I have an active AVM and have had a bleed on the 31st Dec 2013. I have no disabilities after my craniotomy and am in the process of filling my DVLA Medical form now. I have not drove and ill not drive until I have had the green light from the doctors and DVLA. My Neurosurgeon mentioned that I couldn't drive for a year. I've not had any seizures since…Continue

Recovery from Brain Haemorrhage

Started by Bhav1973. Last reply by Martin Brooks Mar 23. 2 Replies

Dear All,I had a hemorrhagic stroke in March this year due to an AVM bleed. Since the bleed I have suffered from issues with concentration, focus, awareness and occasionally issues with short term memory.... It's been pretty difficult to operate myself and maintain relationships with my family due to my personality changes since my avm bleed in the brain!!I am trying to pursue a claim through Critical Illness Insurance which I've had for over a year and a bit prior to the hell I went through…Continue

Anyone having NHS problems?

Started by KaynGaz. Last reply by LoulouYorkshire Mar 21. 26 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

UK AVM Awareness

Started by Jamie Raw Mar 18. 0 Replies

Hi Everyone Having had personal experience with an AVM I am thinking of taking on some challenges over this year and next and would like to use UK AVM Awareness as my nominated charity in an attempt to clue people in. The challenges I am planning at the moment are the following:- 'The cycle ride home' I hail from Devon and currently live in Kent so with a friend we are planning on cycling from Hythe to Exeter over a 3-4 day period.- 'End-End' the big cycling event. Lands End to John O'Groats.…Continue

Comment Wall

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

Comment by Lulu on April 7, 2014 at 8:55am

Hi Martin. Thanks so much for letting me know. I'm really pleased for you. I'm also planning to chat to my consultant about this when I next see him.

x

Comment by Martin Brooks on April 6, 2014 at 4:57pm

Hi Lulu, I asked my consultant about testing for HHT and he was very sure that it was not something I needed. I assume that as I have not exhibited multiple symptoms for HHT that is the reason. Having 3 young kids it was something I was concerned about but has been ruled out by the AVM Specialist @ the Southern General Hospital in Glasgow.

Comment by Lulu on March 24, 2014 at 5:28am

HI Martin. Just to reply to your other question. I have 2 young children and have never been offered HHT. In fact until recently I didn't even know there was such a test. Let me know what happens if you request a test. Lulu x

Comment by Martin Brooks on March 23, 2014 at 4:59am

Hi guys, Just a quick question. If you have an active AVM in the UK (Scotland) Would you be tested also for HHT ?, Or would you have to ask for this ?, Just as I have 3 kids and wished to know. Thanks.

Comment by Lulu on March 10, 2014 at 12:22pm

Does anyone know what the research involves please?

Comment by Nikki on March 10, 2014 at 12:03pm

Hi Thanks for your interest, No this applies to all ages , The main bulk of research is being done at the UCL , but being that they are in partnership with GOSH it comes under the same banner.
Please if you are willing to take part get your doc to give you a referral to be seen at GOSH ..
You are also correct in saying that other than our Charity there is absolutely no funding for AVM research .
We need more people involved to apply pressure for our cause.

George x

Comment by Jo M on March 7, 2014 at 1:23pm

Hi dancermom,
I also read your E-Mail with great interest, and if adults are allowed to participate I would be willing. GOSH is just around the corner from The National where I receive treatment for my AVM and related conditions. Kind regards, Jo

Comment by KaynGaz on March 7, 2014 at 10:56am
Thanks dancer mom

Moderator
Comment by dancermom on March 7, 2014 at 10:31am

Kayleigh, HHT is one type of genetic condition that may avms, but there are others as well. This Vascular Malformations Gene Panel has a useful summary of the known genetics of avms, the particular genes screened for, and their associated phenotypes:
http://www.aruplab.com/Testing-Information/resources/TechnicalBulle...

The Panel screens for 10 genes known to lead to particular types of malformations, but it is already out of date. GNAC, which causes Sturge-Weber and portwine stains, would be the eleventh gene.

Comment by KaynGaz on March 7, 2014 at 10:22am
Hi ,
Received your email about the research and was just wondering if because the research is done at GOSH that only children were needed for the research. If not my partner would be very willing to help out donating blood or whatever else.
My only query was that you mentioned in your email about them checking for a gene link. As far as American research goes they believe it is a genetic condition, HHT ring the link. We have children and were waiting for some research to be done into this so would be willing for their blood to be checked for this gene too as it is a concern. But the NHS say that they do not believe it to be genetic so will not check for the gene. Even though American research states otherwise! This goes back to the problem that not enough funding goes into AVM research in the UK, - I believe none! Other than the wonderful work your charity is doing. Which I applaude you greatly for.
Look forward to hearing from you soon.
Kayleigh and Gary x
 

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Blog Posts

Walking Again

Posted by John P. on March 18, 2014 at 8:00am 3 Comments

My craniotomy to remove my AVM was early in the first month of the year, but at first I could not walk at all and

many who had the same operation I am sure had the same

problem. After two months in the hospital I was able to

use a…

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