UK AVM AWARENESS & RESEARCH GROUP

Information

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: 150
Latest Activity: Dec 12

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

Waiting... a fine line

Started by becky1966. Last reply by Wendy Dec 1. 5 Replies

Hi all,can I ask your thoughts please.6 months ago I started getting horrible headaches - daily, with nausea, dizziness and cognitive problems and for the last 4 months have been seeing a neurologist in my home town. Then 4 weeks ago was told had avm by GP. My local neurologist called me at home that evening to tell me she was referring me to another neurologist in London. 2 weeks later the neurologist from London hospital rang me in the evening to say he needed more scans and thought that a…Continue

Travel

Started by mrs sarah major. Last reply by harley Nov 10. 12 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 .

Newly diagnosed

Started by Williamsmummy4. Last reply by Lulu Nov 3. 23 Replies

Hi, I was diagnosed with a large cerebellum avm yesterday and I am feeling very scared about what the future holds, probably due to lack of knowledge on this condition. I am 41 and with my partner, Rob, We have 2 young children aged 5 and 8 and live in Derby. About 4 weeks ago I was diagnosed with a condition called hfs due to a fairly severe facial twitch which started in August this year. I was sent for an MRI as there was concern about the rate of progression of this twitch which can take…Continue

life insurance

Started by whispers. Last reply by Sara Oct 21. 2 Replies

I have tried everywhere to get life insurance to provide for my family if my 2nd avm bursts and no one will insure me. anyone know where I can get it?Continue

Comment Wall

Comment

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

Comment by jg200 on November 18, 2014 at 4:16am
hi just wanted to leave to see if any avm suffers ever struggle with feelings of guilt for what r families loved ones go with r condition. I was meant to be having my surgery next month after waiting a year as they always have to push you back with emergencys. but my husband got annoyed last night say thats us having to wait all iver again. I feel so sad and guilty for putting my family through this but there is nothing I can do, its not like I can make them admit me any quicker. I usually just try and put a front on to my family as I dont want them to see me sad cause them they get stressed and they have enough to deal with. so I just smile but then when im on my own I let it out. anyone else ever feel like thus?
Comment by jg200 on November 17, 2014 at 2:27pm
yea just had saw guy made a comment bout not being able to drive for 6 months hopefully not be that long

Moderator
Comment by dancermom on November 17, 2014 at 2:07pm

That would depend on seizure activity, jg, vision issues, other things.

Comment by jg200 on November 17, 2014 at 2:06pm
hi everyone does anyone know how long after open brain surgery ur aloud to drive many thanks.

Moderator
Comment by dancermom on October 21, 2014 at 4:27am

Seek emergency care, WM -- better to be safe.


Moderator
Comment by dancermom on October 21, 2014 at 4:26am

Williams'mummy:

AVMs in certain critical locations may stop the circulation of the cerebrospinal fluid, causing accumulation of the fluid within the skull and giving rise to a clinical condition called hydrocephalus.[3] A stiff neck can occur as the result of increased pressure within the skull and irritation of the meninges.

Comment by whispers on September 14, 2014 at 7:37am

anyone live near Exeter?

Comment by Martin Brooks on September 1, 2014 at 4:13am

AVM UK & Eire treatment Centre and Doctor/surgeon list UPDATE:

Hi My surgeons have both done a fantastic job, Firstly I was admitted to the hospital under emergency circumstances with a cerebral bleed with large blood clot, My surgeon Miss Patricia Littlechild - Consultant Neurosurgeon - Southern General Hospital - Glasgow, performed surgery and I was out after 2 weeks with no lasting issues from either the bleed or the surgery. I then had my AVM removed (right Temp lobe) by the AVM specialist at the same hospital who again performed the surgery with no lasting affects :) - Mr Edward Jerome St. George - Neurosurgeon - Southern General Hospital - Glasgow. Again both these surgeons are fantastic in one of Europe's TOP Neuro departments. Thanks

Comment by Julie on July 5, 2014 at 5:20am

Comment by Becca on July 5, 2014 at 2:01am
Hi Julie, I too am a new member in the UK. My AVM is in my pelvis and has just been diagnosed in last few months. I don't really know yet what treatment options are. I'm really interested to hear about UK specialists in extremity avms - because it seems (from my limited experience) that there's no specialist centre for extremity avms in UK? I've been referred to a general vascular surgeon. May I ask what your experience of treatment here has been? Sending you all best wishes.
 

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