I recently saw my stroke consultant for my 6 month review (was nearer 8 but who’s counting ). Following this review I’ve received a letter from the consultant which has confused me a little.
I had a stroke in my occipital lobe and a smaller one in my parietal lobe said to be from a carotid artery dissection.
The consultant had said:
“I have discussed her MRI brain imaging with our regional neuro radiologist. The purpose of the discussion was to understand whether our right internal carotid artery dissection is a culprit for her to have occipital infarct. This could only be explained if there is a communication between anterior and posterior circulation in the brain. Hence to explore this further I am going to request a CT angio to look whether there is a PCOM versus foetal PCA variant”
I have read this as they think my dissection is unlikely to have caused my occipital lobe stroke without something else going on in my PCOM / PCA (whatever they are) arteries. Do you think the same? This is the first I have heard about this and it has thrown me into a bit of confusion. Stroke brain is easily confused.
As it happens I have my CT-angio Monday. Got the appointment before I got the consultant letter so that came as a surprise too
It did throw me off kilter a bit. Mainly because, as you say, they have never discussed it with me. Happy they are investigating further especially if there is something else going on that could put me at further risk.
It would help if they used clearer language but I guess to them it’s everyday speak.
As for a poem on consultant gobbledygook…now there’s a challenge
Good luck with the CT scan. I have to say mine wasn’t too bad an experience at all. Stroke Consultant? We don’t have access to such an elevated being here, just a general medic in the hospital (when I actually had my stroke this was a locum who was sweet but ordered several tests that weren’t available in the hospital I went to) and then the nurse who was new and learning on the job - but if that’s an example of the communication from the species perhaps I’ll stick to the nurse and you lovely people here
@FionaB1 thank you. I think I have seen 4 stroke consultants now and all of them have told me something different. The last one I saw told me that whoever had read my carotid doppler was either inexperienced or incompetent as they said I had no dissection when the 2 MRIs I had said there was a dissection. The 2nd MRI was after the doppler. I did think the comments were a little unprofessional.
I’m with you. I have learnt more from this forum than the medics although I can’t complain about the number of appointments I’ve had.
I hope all goes well on Monday and that you eventually get to speak with a Consultant who can give you all the facts in a joined up way. It sounds like they want to get to the bottom of the issue to avoid any problems in the future which must be a good thing.
@DDMH thank you. I’m hoping I’ll eventually get to find out what’s going on. No complaints that they want to do more tests I think it just threw me a bit as came out the blue.
Hope you have a stress free weekend x
Hi Ann @Mrs5K. I am sorry you are finding new stuff out about your stroke in this piecemeal way, months after the event and not even via a direct to you communication. I believe it is very important that in order to help ourselves we have as much knowledge as we can hold on to. That understanding has it’s role to play in adaption and ultimately acceptance.
I too have learned important details of my multiple problems only by reading the letters the consultants sent to my GP. It is almost like we do not exist or at the very least are incapable of processing the information which granted is sometimes difficult. Keep a pad handy to write questions on that you have when they come to you and refine it to help you remember and make it more to the point. Take this with you to your review after the scan. If you don’t get a review write to the consultant explaining that you have questions, and need an opportunity to discuss them even if that is by phone call. It’s all very well being copied into letters about our conditions that we do not understand either in terms of content or long term consequences. This approach worked for me recently in learning about living with one of my non stroke related injuries that had caused me much anxiety since I found out about it in hospital last August. It really isn’t too much to ask but I think I will have earned my difficult patient badge🎖️. I polish it and wear it with pride. I am a person, not a set of medical records. I have brain injury but that doesn’t make me incapable of understanding in my own way.
All the best for Monday, thinking of you, Julia x
@JuliaH thank you. I think you have summed up how I feel really well. I think all we ever want is a true picture of what’s happened / happening however difficult the news is. I will definitely have a list of questions for the consultant the first of which is what happens next if they find something.
I don’t think being inquisitive about our own health conditions should class us as a difficult patient but if it does I shall too wear my badge with pride as you & @Loshy do
Have a lovely weekend both & thank you for all your support xxx
Hi Ann,
From my experience, the letter from the consultant is only ever meant for your GP to understand and yours is a copy of that. The consultant wants to show how clever he is by using loads of medical jargon.
I only ever met my consultant a couple of times when I first had my stroke, then any further meetings were with one of his minions.
I quite often received one of these letters after scheduled appointments, so maybe the delay is with the people who type them out?
Enjoy your weekend. Minnie
Hi Minnie, I think you’re right although if they copy us in they must realise we will want to understand. I rang my GP about a previous one I received so they could explain it to me. I might do that again but will see what happens Monday as getting a GP appointment is harder than climbing Everest these days.
Hope you have a good weekend.
Best wishes
Ann x
From what I understand, and am in no way qualified or well-read on this, is that they are looking for an abnormality in the artery. My consultant has a theory I had a dissection that, as it was healing, caused blood clots in the smaller arteries leading to my cerebellum which led to TIAs and eventually a stroke. I looked up “foetal PCA variant” and on my reading it was a reduced artery size that affects a small percentage of the population. I would be interested to hear what conclusion your consultant reaches. Hope you are having a lovely weekend.
@Rups thank you for that. That makes a bit more sense now. I had looked up pca variant but didn’t understand what it was telling me. I will let you know the outcome when I get it.
Weekend going ok so far thanks. Hope yours is too.
Hope all goes well for you @Mrs5K and you get a good explanation of what they are looking for too.
I found the way my consultant spoke very difficult as she kept using jargon and I was still trying to process the fact I’d had a stroke, out the blue, days beforehand!!
Sarah
@Sarah59 thank you. I’m hoping I get a little clarity tomorrow although suspect I’ll have to wait weeks for results.
They do tend to talk jargon to us & forget sometimes that we need time to process everything. I know when I was in hospital one of the Dr’s told me lots of things I’d need doing before I was discharged & then the next day the consultant said I could go home & looked at me like I’d gone mad when I mentioned the tests the Dr had said about.
Hope you are starting to feel a little better xxx
@Loshy Hi Loraine, thank you. I have a few questions for tomorrow but my letter says no point asking them what it shows as consultant will let me know. I’m hoping they might at least tell me what they’re checking. That’d be a good start
Hubby comes to all my appointments so he can ask anything I forget.
). Following this review I’ve received a letter from the consultant which has confused me a little.
