During my last appointment, my vascular surgeon told me that, in agreement with the IR specialist that was consulted on my case, they now want to perform embolisation on my pelvic avm to relieve pressure as I am eventually headed for cardiac failure.
I haven’t seen my cardiologist since my tests in December and I have only had a couple of letters to let me know that, based on the results, they will not operate on my PFO as, all in all, the impact on my heart is minimal. Basically, the avm is the problem. At no point have I had a meeting to discuss my results nor was the evolution of my cardiac function mentioned.
Now I have seen a speech/ conference from Dr Alan B Lumsden in Houston where he says he tests patients for PFO as, if present, it allows embolic agents to pass through and is a cause of stroke. Should I contact my cardiologist and request a meeting? Should I contact my vascular surgeon and ask that the cardiologist be present at the next appointment with the IR when we discuss the procedure further?
I would definitely get them introduced to eachother.
I’m taking “PFO” as a patent foramen ovale. I don’t know whether they need to do anything about the PFO (because I don’t know anything about them) but I do believe that having an AVM – especially a large one in the abdomen or pelvic area – can lead to problems with your heart. I think this is because the short cut of blood back to the heart through the AVM means that your heart works harder to try to maintain pressure (there must be a way that it gets feedback as to when to work harder) so a developing AVM with loosening veins will mean your heart works harder and harder over time. If you’ve got a PFO, then I assume that means you’ve got less capacity to deal with the AVM short cut, so probably does bring forward an operation on the AVM.
Does that make sense?
Like I say, I’d definitely make sure that they know you have the PFO and are talking to your cardiologist. If they can schedule a multidisciplinary meeting with them, that would be first class.
Do you know if Dr Lumsden follows a different course for patients with a PFO or is it a matter that he is just ultra-careful?
@Nathalie Hello Nathalie I am glad you have a call with a specialist here in the USA for your PFO I agree with Dick about your AVM.
I would definitely get your cardiologist involved . Let him decide if it’s going to be necessary or not. Doesn’t hurt to ask.
When I had my issues which first started with 5 blood clots in my brain due to too much vit k but they thought at first it might be hormones my stroke dr who is the head of Stanford reached out to my Gyno who works at another competitor hospital- then when I got my AVM my Stroke dr and neuro surgeon worked together - they were both at Stanford.
But nothing is done even now without approval my Stroke dr. I have 4 Neurologists. But mainly see my pain neurologist every 3 months.
Keep us updated and I’ll be thinking positive thoughts for you.
Hugs
Angela