I had an appointment with my specialist yesterday who had told me that there’s a good chance I could have surgery which would likely fix my chronic pain. Today she call and said surgery is off the table. I’ve waited two years to see her, I had to beg for another appointment with her next week to discuss what my options are. She is referring me to a pain clinic, but the current wait list is 4+ years before a consult, let alone treatment. I cannot do anything I used to enjoy - sports, backpacking, weightlifting… because anything causes pain in my shoulder/arm. I can’t wear a seatbelt over my shoulder even. I have to call in sick more frequently to my job because of the pain I’m in and I’m afraid I am going to have to quit my dream job within the next year. I don’t even know what next steps to take. I can’t wait another 4 years minimum before I’m even consulted for a treatment that has no guarantee of working. at my next appointment I will ask for a referral to someone else for a second opinion, but I’m afraid that this is what my life is going to be. It feels so unfair, I had just graduated university and was starting my life, but now it feels like I have no hope.
I get you. Healthcare in Canada sounds very equivalent to the UK. That it is free at the point of need is fantastic but that it comes with the need to wait is sometimes ok, sometimes challenging and sometimes downright hard.
If you’ve got an appointment next week, see how that goes but after that, the key routes that I think I’d have in the UK would be either
Follow up with my GP (general practitioner / primary care) or
Find out about being seen ‘privately’.
While I was waiting for my embolization procedure for my brain AVM, I was declining in terms of my health and I was worried I was headed for a stroke. A lot of the time I pestered the neurosurgery team at hospital but at some point it felt either like they weren’t listening (or maybe I’d griped too much) so I sought the input of my GP. I have to say that my GP was able to plot my AVM using a stethoscope and I think it was her additional information about the size / progress / regress of my AVM from a professional that helped to push me nearer the front of the queue. We have to essentially wait in line and trust the docs to prioritise us against their other cases but they do need to have the facts of how well or otherwise we are doing.
The other route forwards in the UK is essentially to pay for one’s care and get into a different queue than the public health service queue. It’s not cheap – usually thousands of pounds – but it is an alternate route. My wife is struggling with debilitating pain at the moment for an issue that she has and we have asked about being seen privately for her. When I was waiting for my embolization, I asked about being seen privately but it was pretty expensive. I decided to trust the public system (and keep griping) rather than spend £12k-15k on being impatient! I completely get that pain makes life very hard, so maybe it’s a thing to consider how hard. Do you have the (at least theoretical) ability to seek private care in Canada in a similar way that I’m describing? I understand the practicality of $$$ might make it impossible or difficult.
Thank you for your input. I’ll ask about any options of private healthcare - but as far as I’m aware there would not be a privatized surgical option in Canada. If I’m unable to find someone in Canada who can operate, my only other option is paying out of pocket for a referral in the United States. From what I’ve seen, there’s likely more advanced surgical options there, and better likelihood of finding someone willing to operate. Every time I think I know how frustrating it is to have an AVM it somehow gets worse.
Hi ,
Kindly contact scarborogh Neurology Clinic, Its only for Neuro cases with 7 or 8 Experienced team of Neurologist .check Link below. If possible as your family Dr for referral to below facility. : https://www.scarboroughneurology.ca/
The US seems several times more expensive than the UK as well, so affordability becomes an issue. I’m that you can go privately in Canada. I’ve googled it and it seems that it’s possible for ‘medically necessary’ procedures, exactly for avoiding having to wait. As you say, this is more commonly referred to as ‘out of pocket’ in North America rather than ‘private’.
Meanwhile, good luck with next week. If you run out of publicly-funded options with her, maybe ask if it would be different if you paid out of pocket (and how much).
Really sorry to hear your situation, I can only imagine how frustrating it must be. I am Canadian as well, currently living in Nova Scotia, but until a year ago had spent 35 years in Manitoba, and may be back soon. I’m not sure on any private clinics that would do vascular surgery. I know lots of private orthopaedic etc(my wife paid for surgery on Calgary due to a 2 year wait) is available. In Canada, all provinces have a reciprocal agreement, Quebec excluded) if you can locate treatment elsewhere in Canada in respect to funding. There is a number of steps to get to that point, but I know a lot of facilities will do virtual consults as well. It may be an avenue to explore, and a starting point may be the link below:
This could start with your GP and move from there if no options are provided at your next appointment. I won’t get into the US options in depth but you might want to just have a look at Mayo Rochester, if nothing else further information for you. I know the cost is prohibitive, but if there is a treatment option in US there is some leeway through provincial health to explore the possibility if the capability doesn’t exist in Canada.
Below is a service in Canada that will link you to specialists. I have a friend who used this service and was incredibly pleased with the results. Sorry to throw a ton of info at you! Take Care, John
