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: 139
Latest Activity: on Sunday

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

Travel

Started by mrs sarah major. Last reply by kevin matthews Jul 28. 10 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 .

extremity AVM treatment options in uk?

Started by Julie. Last reply by LoulouYorkshire Jul 11. 4 Replies

Hi all. Had another MRI scan yesterday and want to be as well informed as possible when I have my next consultation to review the results and options (including 'do nothing') · Does anyone have an understanding of where the best expertise are forExtremity Avms in the UK? What have been your experiences in the uk and could you recommend anyone? Such a rare thing it is hard to know where to look let alone compare.Hope you are all doing well.Continue

New Mortgage's UK (Scotland)

Started by Martin Brooks. Last reply by Wakeboarder Jun 28. 4 Replies

Hi guys, I'm in the situation that my kids are growing so fast and was planning on getting a new house (bigger) obviously my AVM has gotten in the way a little with the timing of all this. So my question ... I'm hoping that my surgical removal goes ok and I'm able to work as I did in the past. If this is the case will I be able to get a new mortgage and also do you need life insurance with a new mortgage ?. Thanks.Continue

Tags: House, New, Insurance, Mortgage

B&b

Started by mrs sarah major. Last reply by mrs sarah major May 3. 2 Replies

Hi everyone my daughter has got an appointment at the national hospital in London .This is a first appointment we are under hull royal infirmary but her phsycologist referred her to London . However we live about 5 hours away from the hospital and are travelling the day before has anyone stayed at any hotels or b&bs near there I would be grateful for any info .

Comment Wall

Comment

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

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.
Comment by Vin Frm VinandOmi on June 29, 2014 at 7:19pm

Hi Sarah
I have got in the habit of calling the consultant's secretary and asking them if they have my scans before I go to the appointment. The problem with the Neurology Centre is the admin - they are so busy. As you've had a wasted appointment before, I think it's perfectly reasonable for you to make sure they have all the angio results ect. We tend to try and make friends with the medical secretarys where possible.

Comment by Sarah on June 29, 2014 at 7:00pm
Vin, I have been seen at the London neurology centre, they are one of the hospitals I'm waiting for a follow up appointment from , though I didn't find the appointment to be useful at all, they hadn't even seen the scans of my ct scans , mris or angiograms , maybe mexg time they will be better though
Comment by Vin Frm VinandOmi on June 29, 2014 at 6:53pm

Hi Sarah Can you get a second opinion ? I asked to be seen at the National Neurology Hospital in London - maybe a referral there from your GP could give a different perspective?

Comment by Sarah on June 29, 2014 at 6:32pm
Hello , I'm new to this site, I'm sarah, from Northamptonshire, my avm was discovered in 2009 and treated by gamma knife in Sheffield in 2010, which has gotten rid of the avm, but also hugely reduced the blood flow to a major artery , which as now gradually causing brain damage, the information I have previously found on avm has been limited , so it's a huge relief to find this site and have somewhere to talk with people who understand !
 

Members (138)

 
 
 

Help Us Help Others

Help Ben's Friends

Like, Follow & Forward Us!

Follow Me on Pinterest

To Support AVMSurvivors.org, Click an Ad. Or Two.

Are You in Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

Photos

Loading…
  • Add Photos
  • View All

Blog Posts

26 Years!

Posted by Barbara H. on August 3, 2014 at 10:00am 12 Comments

My life changed 26 years ago today. Most people when they write that sentence...it usually means a marriage or a birth of a child. In my case, I suffered an AVM rupture and lived! Although completely paralyzed on one side...I learned to crawl...sit… Continue

Events

© 2014   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service