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: 177
Latest Activity: 23 hours 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

Getting bad again

Started by Dave. Last reply by Dave 23 hours ago. 6 Replies

so after weeks and weeks of recovery surgery, more surgery the embolisation chemical Onyx had started to come out of my face, again has anyone any experience of this, as last time i started hemorrhaging badly.Am afraid this is happening again like last time, oh and NHS aint helping at the moment, only will if it starts getting real bad, and through past experience i had to be in the hospital and in the ward actually bleeding profusely before they would even bother thinking about surgery to stop…Continue

Anyone having NHS problems?

Started by KaynGaz. Last reply by LoulouYorkshire yesterday. 40 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

Can someone please help

Started by Dave. Last reply by Dave on Tuesday. 13 Replies

Lately i have been receiving treatment from the NHS for my facial AVM, my AVM started many many years ago but was so small i never bothered, but in the last few years it got to a point it was causing issues, so was referred by my GP to so called NHS specialists.Anyway over the last few months i have had some work done, as i was told i had to, so went ahead with embolisation to my lip where the AVM was, it was huge tbh. So had ONYX pumped in for 5 hrs + under general, all went well, but the next…Continue

The use of ONYX and AVMs

Started by Dave. Last reply by Dave Jun 17. 4 Replies

wonder if anyone in the UK has had the Chemical OYNX used for treatment of their AVM, mines is not in my brain but facial, i know usually that after embolisation with OYNX the AVM is usually removed, but on my second day surgery to remove the OYNX filled AVM my surgeon basically reiterated what he has always said that there is a high possibility you will not survive, so i declined treatment and am now left with this in my face.Just wonder if anyone in the UK has had any experience with this yet.Continue

Comment Wall

Comment

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

Comment by Emma on July 20, 2015 at 1:30am

Hi guys, I'm all new to this group but I'm after a bit of advice. I was only diagnosed 10 weeks ago today and was given very little info whilst waiting for an appointment to see a specialist.All I know is I have a large AVM in the temporal/occipital lobe region. I am on medication to stop seizures and migraines.

Before being diagnosed I'd planned a birthday weekend out with some friends at a spa, my question is are steam rooms and saunas safe for people with AVM's? I feel so frustrated that the neurologist at my local hospital just told me I had an AVM and he was referring me and that was it! No do's and dont's no info at all.

Thank you in advance Emma


Moderator
Comment by Madere (dancermom) on June 13, 2015 at 7:53am

I'm reposting this here, as it can be confusing to receive a message and not know where to reply:

A message from Yogadatti to all members of UK AVM AWARENESS & RESEARCH GROUP on AVMSurvivors.org!

I have an AVM that can't be accessed and had had embolisations but they haven't eradicated it.....now told that it too small for gamma knife cos of the chances of doing more damage...been told 3 times that it won't bleed again but it does....this has been going on since 1997.... I am now 65 ..... I know lots will say , well at least you are older and have had a life....but it doesn't make it any easier ......I am at Queens Square National....it seems they have more success in USA in getting rid of AVMs or is it we only hear about the positive outcomes?


Moderator
Comment by Madere (dancermom) on May 13, 2015 at 3:25pm

Sorry, Natasha, I can't think of any UK AVMers with tongue avms. In addition to Debra, you may wish to friend Bek, from Australia. Sorry also about the Onyx. I hope you feel better soon.

Comment by Natasha Walters on May 10, 2015 at 12:29pm
HI all anyone on this forum have a tongue AVM?
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 Madere (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 Madere (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.
 

Members (177)

 
 
 

Help Us Help Others

Support Ben's Friends

Bens Friends

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.

AVMSurvivors is a peer-to-peer network

To get support, give support.

Events

Blog Posts

Changes in latitude

Posted by tdz103m on July 29, 2015 at 3:00am 1 Comment

My wife and I recently located from NJ to SC (USA). We had been planning on it for the past few years but I had a stroke a few years back so I was still a bit under doctor's care. Wanted to make everything was okay.

I had a pretty good…

Continue

Gift Store

© 2015   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service