I live in Canada, yes our healthcare is “free”, but wait times can be very long! My AVM (unruptured, left occupational lobe, 2.5cm) was discovered 2 weeks ago, I was referred to a Neurosurgeon and told that I should get in this summer for an angiogram to determine treatment. What concerns me is the possible wait time for said treatment. Approx how long of a wait is it in the US? Depending on the wait time here, I’m considering looking into treatment in the US. It’s only been 2 weeks and I just don’t have the nerves for this🤪
Hello Phoenix. All I am able to add is that I am a few months ahead of you with similar circumstances (diagnosed for the first time at 50 only a few months ago, however by hemorrhage) and I am really being let down by our healthcare here in Canada.
From my perspective, if the resources are available to you, you would certainly be wise in investigating treatment in the US. I see all kinds of mentions from other members here of the excellent treatment they have received and it reminds me of why competition is good for the customer (patient in this case). Our lack of options in Canada provides no accountability by those rendering care that I am starting to feel; and it appears to be easy, that I am falling through the cracks. Trying to get information from my neurosurgeon is near impossible and it appears they would rather keep me in the dark than let me in on what the gameplan is. I have my fingers crossed that my procedure tomorrow will not be cancelled for the third time.
Best wishes to you on your journey.
Regards,
Chris
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I have to come to the defence , somewhat, of the health care in Canada. I am in Manitoba, and my care was really good, particularly when urgent aka bleed time…then things slowed down as I became elective as non emergent. I have recently traveled to the US for an EEG as wait time is about 9 months or s right now, I called on a Wednesday and was in Fargo North Dakota having it done on Monday.
If looking at the US for a consult, Barrow, Mayo in Rochester, and UCLA are very well spoken of. I know for sure that Barrow will do an opinion based on available scans. I think the angio is required, worth a look maybe. I was doing some research but did get lucky and was taken care of in good time. My two neuro surgeons that I dealt with were super nice and really down to earth.
I hope things get moving along for you Phoenix, the waiting is very difficult. I was 6 months from bleed to gamma knife, as I noted I became elective.
Chris, hopefully things can get moving for you as well! I have another health issue I’m dealing with and it is not nearly as smooth as my AVM process…I may go back to ND and just take of it!
Take Care,
John
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I’m sure the answer is going to be that it is practically immediate in the US. Usually any delays there are to do with getting the permissions from the insurance company to go ahead.
It’s a very difficult situation to be in and I mithered my way through autumn and winter 2016/17 with the same thoughts going on as you. It is very difficult.
In my case, my boss temporarily offered to fund my embolisation procedure, so asked me to find out how much it would be. It turned out to be about £12,000 for the procedure and a further £12,000 for each month of hospitalisation (should I have needed any longish recovery time in hospital). My boss immediately lost interest in stumping up that sort of cash, so it then fell to me to be in a similar situation to you as to whether to find that money and get it done or (by contrast) be patient and wait for the NHS.
My consultant indicated he could operate on me before Christmas if I paid privately; otherwise I’d get seen at Easter on the NHS.
I decided that 3 or 4 months difference was not so much and it was an incredible amount of money to spend on impatience!
One thought that I want to offer is that we all feel these things are acutely urgent. It’s a very frightening condition to have and so it feels very urgent. However, from what you described in your first post, it sounds like you’ve had your AVM from birth. Indeed, the vast majority of AVMs are believed to be congenital (formed in the womb). So the difference of waiting for a few months shouldn’t make a great difference in terms of your risk.
By contrast, mine was a DAVF, which is considered possibly acquired and seemed to be changing quite rapidly. So while I stuck by my plan of “patience!” I wasn’t especially patient with the consultant or his nurses and relayed to them any changes I was having, every couple of weeks. I didn’t want to elbow my way to the front of the queue and put anyone else at greater risk than me into even greater risk: I just wanted to make sure that they put me in the right place in the queue, especially as I appeared to be getting worse.
How stable do your symptoms appear?
Best wishes,
Richard
Very wise way to look at it for sure. The issue that I am having is with these constant cancellations, I no longer feel like I am deemed important by my neurosurgeon and dont feel like I am in good hands and being looked after to the best of their abilities.
Just a quick google of AVM surgery will turn up a bunch of US hospitals, educating the reader on what an AVM is and what is involved in treating. In a sense they are competing with each other by looking for the “business”. I dont get the same sense that my “patronage” is valued on this side of the border. If it was a matter of timing of a few months I dont believe the cost would be worth it, but I am beginning to believe the benefits would be greater than just timing.
Regards,
Chris
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I hear you on the cancellation front. I was lucky there: my date moved a few times within the “March/April” window but I know here that dates can suddenly go back months or year(s) with very little warning and a complete lack of “control”.
It’s a further difficulty we face, I agree.
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Oh Chris, I’m sorry to hear this! As much as I love Canada and am greatful for or “free” healthcare, but all to often many do fall through the cracks due to lack of services.
Hoping that you are seen soon and treated with priority!
Happy to hear that you received treatment in a timely manner! Thanks for the info, I’ll be sure to keep this in mind. Trying to remain hopeful that I’ll receive an appointment for angiogram sooner than later and recieve my care here in my province.
This…
…this is what I need to keep in mind!! And my symptoms have been pretty stable nothing new or worse. Keeping faith that the Neurosurgeon will code my file and treat me in due time.
I hope you receive treatment sooner than later!
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I had my treatment in April 2017. I’m doing fine 
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[@Phoenix]
I concur in re: Mayo Clinic (Arteriovenous malformation - Care at Mayo Clinic - Mayo Clinic) and would add Yakes Vascular Malformation Center (https://www.theyakesvascularmalformationcenter.com/) in Colorado. Other treatment centers of excellence are Johns Hopkins (Vascular Anomalies Center | Johns Hopkins Radiology), Cleveland Clinic (Get Arteriovenous Malformation Treatment | Cleveland Clinic), and Stanford (Vascular Malformations Clinic | Stanford Health Care).
I was diagnosed with a Class IVb cervical AVM involving the carotid and jugular in 2016 with initial treatment at Mayo Clinic and then transferred to Yakes Vascular Malformation Center in 2021 due to proximity (40 miles) and multiple recommendations. Both have been outstanding.
From the time I contacted Mayo until I met with the Neurosurgeon (Dr. Bernard Bendok) at Mayo Clinic - Phoenix, AZ was about one week.
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I’m not in Canada, so I can’t speak to their healthcare system. But here in the US if a doctor recommended, you have an angiogram, quite possibly be in the next two or three days that one would be scheduled.
For me, when I had a bleed and was in a hospital in Louisiana, research was done a consultation with made over the phone to Dr. Robert Spetzler (now retired) in Phoenix, Arizona at Barrows neurological institute in Saint Joe’s Medical Center and I was in surgery two weeks later.
Just a fun fact: There is a book written about him called “The Healing Blade” by Edward J Sylvester
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Hi!
I’m from Canada as well, so I’m not sure about US wait times. I was referred to a specialist in Vancouver since I was having a lot of pain from my AVM and was loosing function of my arm. After confirming that they had my requisition for treatment, I called several times to ask how long it would be until I got treated. After my calls being ignored, and never hearing back from them for about 7 months, I decided to seek treatment in Alberta. I got a consult within 3 months of being referred, and started treatment a month after my consult. I have now been through two treatments with my doctor in Alberta, and have still yet to hear back from the doctor in Vancouver. Long story short, it might easier to try find a different doctor first, then look out of country.
Best of luck (:
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I’ve gotten “lucky” sorta - mine ruptured & needed immediate attention. It was worked on in Phoenix by Barrow Neurological
I spoke with them about cases similar to mine that aren’t ruptured, etc. They also get a similar run around of “how immediate” is it & will whatever insurance you have cover this, and so on
It’s quite sad that money becomes the #1 factor in how our health treatments are handled - again, I was very fortunate
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What a frustrating, but consistent part of Neurology. They seem to love to treat disasters, and have no idea how to avoid them - perhaps the sad truth of where we are. You have to be your own advocate and read up and take care of yourself nutritionally etc. The best places in the US, UCSF, Stanford, Barrow, and Mayo all seem to take this approach, but there are great people here, if there is an immediate need. There is no coaching, advise etc. as this would put them in a liable position, so you are completely on your own if you are smart enough to care - oblivious if you are a moron. Buckle up, the ride sucks. Change everything you eat to prevent bleeding. No emulsifiers - enjoy this can of worms.
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So much truth in this post. All I can say is to get as many opinions as possible. If you can go the conservative route, please do; there are so many side effects officiated with AVM treatments.
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