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: 162
Latest Activity: Mar 20

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

Anyone having NHS problems?

Started by KaynGaz. Last reply by Chrissie Mar 5. 27 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

DVLA Medical Panel ??

Started by Martin Brooks. Last reply by Martin Brooks Feb 26. 4 Replies

Hi Guys, May I ask what your experiences has been like if you have had to stop driving specifically in the UK. And how long was the ban/exclusion and how long did it take to get your licence back ?, The reason I ask is that I was asked not to drive for 6 months after Craniotomy (July 7th 2014) I reapplied and the DVLA got my reapplication forms 20th Nov 2014 (approx. 8 weeks before Jan 7th when my exclusion ends). So I got a letter 19th Jan saying that they were waiting on information from my…Continue

Tags: DVLA

Waiting... a fine line

Started by becky1966. Last reply by Wendy Dec 1, 2014. 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, 2014. 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 .

Comment Wall

Comment

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

Comment by Lulu on February 4, 2015 at 6:08am

Hi Rob. I have also decided to live with my AVM. There are a few of us on here although we are in the minority. I am 41 now and at 14 was diagnosed as having recurrent hydrocephalus. At 27 this was linked to large AVM in my Cerebellum. I have been gien the option of trying at least 3 embolisations and Gamma Knife. But there is only 50% chance of success at best. My AVM hasn't given me any further problems and after some soul-searching I decided to leave it alone as the effect of the treatment would have such a huge impact on my life. I think sometimes treatment is not the best option. But I understand that you daughter is very young. At the end of the day it has to be your decision though so don't be swayed by anyone else.


Moderator
Comment by dancermom on February 4, 2015 at 3:26am

I agree on Spetzler, Rob. His opinion will definitely be helpful.

Comment by Ab on February 4, 2015 at 3:23am

Dear Rob,
I know of someone who had a bad AVM and decided to live with it. This was more than 10 years back and is doing fine. However she was well over 40 at that stage so obviously her outlook and risk assessment was very different to yours. So probably not helpful.

I would suggest that you do get in touch with Dr. Spetzler at Barrow Institute in Phoenix. If I am not wrong the AVM grading scale is named after him. I had reached out to him for my son's spinal AVM and he was helpful. You will need to send him the Angios.

All the best

Comment by Rob Grant on February 4, 2015 at 3:23am
Thanks dancermom

Moderator
Comment by dancermom on February 4, 2015 at 3:19am

Rob, using the search box at the upper right for "stage 5" or "grade 5" should help pull up discussions from members in similar situations. Yes, some have decided that living with the avm is the better option. With a complex situation like Maddy's, getting several opinions and weighing them carefully is a must. I am glad that Maddy is doing well. I appreciate how difficult this must be for your family.

Comment by Rob Grant on February 4, 2015 at 3:14am
We have finally got results of Maddys Angio and she has grade 5 AVM in left side of brain. They have said that survey and radio therapy are options but with high risk. Has anyone else had surgery as grade 5 and what are people's outcomes? Also has anyone found an AVM and decided to live with it rather than chose treatment? Maddy is 9 and strong and healthy. She does not even think she is ill and her sisters are completely oblivious apart from our controlled panic every time she gets a headache.
Comment by Julie on December 27, 2014 at 5:58pm

Seasons greetings to you all. I have anothe appointment looming on 27 January. My AVM has been undergoing a growth phase and i think some treatment is on the cards now as now have some discomfort with leg pain and that my foot is pulsing though nothing visible. Anyone had experience of AVM expertise at St Mary's Hospital Paddington (Proffessor Stanfield, Dr Hamaday?)

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.

 

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11 month update

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