I am based in France with my boyfriend. He has AVM discovered incidentally through an MRI scan. He had a cerebral angiogram on Monday. The neurosurgeon was confident about an emobilization prior to the aniogram however afterwards he explained he is concerned about the risk to his peripheral vision. He asked my boyfriend to decided whether he wanted to do the emobilization. At this stage the plan is that the neurosurgeon will attempt the emobilization however if there's any risk to the vision he will not go ahead. Peripheral vision is very important to my boyfriends job. Also if the AVM cannot be treated he will no longer be able to work in his current job. My boyfriend and I are from Australia and so we are trying to navigate all of this in a foreign country without our family. With our limited french and the surgeon's limited english it is hard to get a full gauge on risks etc. I would love a second opinion however it would need to be done online. Does anyone have experience with online second opinions? If anyone has a recommendation I would really appreciate it. I am so grateful that I have found this website, I know how lucky my boyfriend is that the AVM was found prior to a bleed so we feel so lucky.
Hi there I am located in Sydney and can refer a neuro if required but I don’t think you will be able to get any online opinions, however maybe you may call their office to see what they can do if your originally from here…let me know I’m happy to provide any info…on that note you know there are plenty of UK members who may refer neuros there and at least you know there won’t be any communication barriers…God bless!
My boyfriend is from Sydney so that would be excellent if you have someone you could recommend? We have the scans from the MRI and the cerebral angiogram on a CD so fingers crossed they may have someone able to review and provide a consultation on the phone?
No prob I would recommend Dr Erica Jacobson from Prince of Wales Randwick as a neurosurgeon but do advise they are always very busy. She is located at Randwick or also Dr Mark Davies neurosurgeon from St George Hospital at Kogarah…they operated on me and were fantastic…God bless!
You may check out the Link below. They offer online second opinions as long as they can get access to your images. They are world renowned for AVMs. I wish you the best!
I'm sorry you and your boyrirend are going through this, and while abroad.
I can definitely, highly recommend, the Barrow Neurological Institute's Second Opinion Program.
The cost is just $100 and you upload your images.
Barrow Neurological Institute is part of St. Joseph's network of Hospitals, Barrow is ranked the #6 neurological facility in the United States, they do more neurological procedures than any other facility in North America and they have the largest Neurosurgery residency program in the United States.
I've used their service twice, and was very pleased. Last time, Dr. Najaki, the Chief of the Neurosurgery Residency Program as well as the Chief of Minimally Invasive Surgery reviewed my results and sent me their report by e-mail.
It does take them 3-7 business days to respond with the opinion, however.
Best of luck and hope this helps and I hope you and your boyfriend have the best possible outcome. I can definitely relate to the worry that goes with this situation, as well as the worry of job impacts as well.
Wishing you the best and sending positive thoughts and prayers your way.
Hi. Barrow that was mention here is very helpful . You can Also contact Dr. Michael Lawton from UCSF. google his contact info.
I think you should contact Prof. Moret . He is in Paris , and he is top expert for embolization. good luck
I have a question for you, We have a CD of images from the neurologist I'm just wondering whether we need a programme to convert the images and then upload them? at the moment I can't view them as I don't have the correct programme. Did you happen to recall how many images you included? My boyfriend is booked in for a emobilization on the 24th of November. The Neurologist is doubtful that he will be able to complete it so I'm trying to organise a plan B and work out who we could go to next.
I saw on your profile that your AVM was discovered 8 days before my boyfriend's - so it seems we are on a similar journey! If you don't mind me asking did you find that the second opinion differed greatly to what you were initially recommended?
All the best - I'm hoping you are able to have your AVM treated successfully.
Thank you again for the information
Thank you so much for your vote of confidence - three people have now recommended Barrow which is a great sign that they offer a reputable service. It can be hard to put your faith in an internet service!
Yes, Barrow's initial opinion was different than my primary care doctor, so it's worth submitting your images for the $100, in my opinion. Again, they do the most neurosurgical procedures than anywhere in North America each year and a top doctor there will review the images.
I uploaded four tests, from disks, must have been around 1000 total images. It seems like they go into a black hole, and my computer too a long time to upload them, but after I created my login, I was able to see them.
If you have difficulty, you can call Stephanie, their second opinion program coordinator at 602-■■■■■■■■ or ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■ Maybe a copy shop and/or a shop with fast internet and an IT expert on site can help you to upload the images in France as well?
Best of luck to you and I hope for the best possible outcome!
Oh great thanks so much for that Mike. My boyfriend has just uploaded the photos - 660 in total and has sent all the information. It will be really great for us to have this second opinion incase the planned emobilization in two weeks is not successful. I am interested to see what treatment is recommended by Barrow as I know different countries favour different methods.
Sending you good luck and strength