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: 144
Latest Activity: 6 minutes ago

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

Newly diagnosed

Started by Williamsmummy4. Last reply by Williamsmummy4 11 hours ago. 18 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

Travel

Started by mrs sarah major. Last reply by Sara 12 hours ago. 11 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 .

life insurance

Started by whispers. Last reply by Sara 13 hours ago. 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

still in coma

Started by ayshen. Last reply by whispers Sep 12. 6 Replies

Hi, I have just added a post to another group and just noticed UK one. My cousin had a AVM operation at left cerebral, shunt and coil embedded. Its been over two months and still in coma. I need to now whats waiting for us? I noted some you already had similar operations. Would you able to provide some advises please? ThanksContinue

Comment Wall

Comment

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


Moderator
Comment by dancermom 22 hours ago

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


Moderator
Comment by dancermom 22 hours ago

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.
Comment by Vin Frm VinandOmi on July 5, 2014 at 12:40am

Hi Julie - I requested 3 opinions on the NHS before my brain embolisation. I had to push for the 2nd and 3rd opinions - but am pleased i did

Comment by Julie on July 5, 2014 at 12:34am

Hi all. I am a new uk member from hertfordshire. Just introducing myself. I have a (now) large avm on my lower back (sacrium) that made itself known to me 15 years ago or more. High flow so treatment options limited. Interested to hear about other members experiences of treatment experienced on nhs, particularly for external avm s. Hope you are all doing well.

Comment by Vin Frm VinandOmi on June 29, 2014 at 7:26pm

Sounds like you've got it sorted out Sarah. Good luck with the appointment. I went from Oxford to London too !

Comment by Sarah on June 29, 2014 at 7:24pm
Vin, I have asked for all my recent scams to be sent to them now , and I have my pre gamma knife ones on cd so I can take those with me, secretaries can be amazing , the one I speak I at oxford is brilliant, always helpful and ready to listen , but some are just too busy to really take the time.
 

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Spinal AVM's - Cyberknife - 4 months on...

Posted by wozza on October 21, 2014 at 3:36am 12 Comments

4 months now since I had the Cyberknife focussed radiation on my 2 remaining sub dura spinal AVM's at L3 & L5, it's been a roller coaster of physical and mental health.

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