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Hello...anybody here in Ireland?


#1

Hello

I’m a newbie here. I have a cerebral AVM which ruptured out of the blue in 2016. I’ve got away fairly lightly - some residual minor problems with my speech, and epilepsy which is well controlled (fingers crossed). I had stereotactic radiosurgery to treat the AVM in 2017, but won’t know whether it has worked / is working until another scan in early 2019.

Is there anybody on here at the moment from Ireland? I’ve searched and found some older posts, but don’t know if those people are still around.

I currently live in the UK, and had my AVM rupture and gamma knife treatment here. But I’m considering moving home to Ireland soon. So I’m trying to figure out what my treatment options / experiences would be like there. I’ve come across a couple of names of consultants (Rawluk and Javadpour), and spoke to one of their secretaries who said that they are currently using stereotactic radiosurgery on AVMs in Beaumont (my previous research suggested that they had the kit but were only using it on tumours).

If there is anyone Irish here - would you be willing to tell me about your treatment experiences / waiting times etc? I’m just slightly nervous about going home to the public system at home after having had really good care in Sheffield.

Thanks
Steely


#2

Steely,

I’ve seen a few people saying they are from Ireland but most, to my memory, have had their treatment in Great Britain. I hope you’ll get some people who can say otherwise.

Best wishes,

Richard


#3

Hi Steely, I’m from Ireland. I had emboilisation done in Beaumont in 2007, but had to go to Sheffield for radio surgery which I had done in 2009. Its being along time since I had treatment, Beaumont have probably more up to date treatments in place now. It was my neurosurgeon in Beaumont Mr Young that organized for me to be referred to a neurosurgeon in Sheffield for treatment as at the time it wasn’t done in Ireland. As you already have made contact with the people in Beaumont which is great, you could also talk to your neurosurgeon in Sheffield to recommend who would be best to take over your case in Ireland. Hope this helps. Get in touch if you have any further questions. It will be great to have another person in Ireland. Cheers Roche


#4

Dear Steely,

I am also from Ireland. Unfortunately I haven’t had much contact with Beaumont in over 25 years, so the personnel may probably have changed a bit. The first thing to do is get in touch with a GP who can refer you. If you intend to go public, waiting lists will be long unfortunately. If possible, I would seriously consider getting VHI or LAYA. You may have to put up with a 5 year waiting time before your AVM is covered, but I would still recommend getting some sort of cover. Can i ask what area of the country you are coming back to?


#5

Hi .my son Nathan is a patent of Dr javenpour in Beaumont he has an inoperable brain avm… Mr javenpour is one of the best avm doctors in Europe and I can honestly tell you you will get the best treatment from him. My son was in the beginging with another doctor and we found him extremely rude unhelpful and interested In money in our opinion .we nearly lost faith in Beaumont untill some 1 told us to get an appointment with Mr javenpour wich we paid for and it was the best spent money he is not only a kind thoughtful person who understands the worry but he is a brilliant doctor …we had gone to Germany with our son to try for a treatment nd while Mr javenpour didn’t agree with the German doctors he communicated with them and disscused the case nd also suggested we send nathans scans to America and Sheffield which we did and the opinion of America nd England was that Nathan’s avm shouldn’t be touched just as Mr javenpour had said but he truly helped us in as far as he knew we needed to try every thing even though he knew he was right he was a big enough and great enough doctor to help us and continues to help us in ad far as he can’t operate on the AVM but he has done and continues to do all he can to keep Nathan pain free and tells us all the time that he’s looking out 4 any new treatments and keeps Nathan in his mind at any talks on avms he also keeps a very worried man nd dad calm thank God we were recommended to go to him.so in answer to your question at last sorry …you will have the absolute best in the avm feild in Mr javenpour I really no i will be doing you a great favour as we were in telling you to go to see him . What I suggest is pay for a visit with him as waiting on a public appointment could be months our doctors well most of them are brilliant but our plubliv health service is bad but any ways discuss your case in a private visit its around 200e but worth every penny and you can find out what you need and you don’t need to stay private after that just tell him you are public health you will still see him public from then. he really is the best avm doctor in Europe so as far as your health i hope thay helps with your decisions if you should come home to Ireland and if I can help in any other way let me know .best of lucko