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AVM Survivors Network

Contacts wanted


#1

I have a large posterior fossa grade V AVM which takes up most of the vermis of my cerebellum. My first haemorrhage was back in February 2009 and the second haemorrhage was more recent update in August 2015. In both instances I was very lucky and did not have any mobility issues.

However, at this time after a second haemorrhage and receiving embolisation treatment and a follow up cerebral angiogram in October I wish to gain opinions of other professionals in the field. Back in 2009 I received information from Sheffield here in the UK that the AVM is untreatable due to its size and location within the brain. I am now awaiting an opinion from Sheffield once again.

I have received an opinion also from a neurologist in the USA to go for radio surgery over a three year period to shrink the malformation to allow for removal.
The location of the AVM is near the brainstem in my case and another haemorrhage may have devasting consequences. At this stage I want to clarify every option.
Does anyone know of contacts in Israel or Germany as I know there are many specialists there?

Thanks and I hope you are all feeling well!

Paul


#2

Paul you might try contacting The Aneurysm and AVM Foundation and see if they know of anyone that would be able to provide with the information that you are looking for. They have a website and a Facebook page. You might also look into posting on The AVM Awareness Facebook page as well. I wish you the best of luck.


#3

Paul:

I don't know of any contacts in Israel or Germany, but I do know what it is to have Radio Surgery for an AVM in the Cerebellum. My Doctor's said that my AVM was too close to my neck muscles to attempt surgery. I was diagnosed in Nov. 2014 and had Gamma Knife Radiosurgery in April, 2015. I am now on the 3-year track to eradicate the AVM. My 6-month MRI showed no damage to the surrounding AVM tissue, which was a blessing. My main issue continues to be that I am often times off-balance. I have no real pain to speak of. Staying positive is so important to this journey. I hope you find competent neurosurgeons soon.


#4

Sorry I can’t assist but I’m sure someone here would be able to assist… God bless!


#5

Hi Paul.

I'm in the UK also and have an AVM of the Cerebellum. Back in 1985 when I was 12 I developed recurrent Hydrocephalus and was treated at the Radcliffe Infirmary, Oxford 2 years later. Unfortunately for me that hospital burned down years later and with it went my notes/scans. So it wasn't until the mid-1990s that I found out the Hydrocephalus was caused by an AVM. My care was transferred to John Radcliffe, Oxford and I now go for MRIs every 2 years. However my AVM is unruptured and untreated. Some years ago now one neurosurgeon said gamma knife treatment may be possible. But Sheffield refused to touch me unless I had at least 3 embolisations first to shrink the damn thing. I have 50% chance of successful embolisation and more chance of other deficits so I refused treatment. I'd be VERY interested to hear your second opinion from Sheffield if you wouldn't mind letting me know.

Best wishes
Lulu


#6

Hi Paul
I am from Israel. My 12 years daughter had a bleed from her AVM almost a year ago. She found not suitable for onix by embolization. The visited almost every vascular specialist in Israel and came to the understanding we must take her abroad for saving her !!! She had a successful operation performed by Dr. Michael lawton and Dr.Nalin Gupta at UCSF ( San francisco)
good luck