I supposedly had a stroke (bilatteral cerebular infarction on the 14th december 2020)
I finaly managed to get a CTA done (with contrast) privately (£1000) in an attempt to find out how this happened
Consultants said all was fine (not answering anything at all)
Being a 3d modeler i checked myself and found aneurisms one of them realy bad
I have uploaded a pictures of the worst one
This one appears to register as calcified and very scarey (widest 8mm with a small sac off a sac)
I now have pressure headach behind eye and bulging vein in front
I have neckache and my eye pulses in time with heart beat (if BP is up)
Question is should i just stay in bed crying with no exercise
Im realy confused and so far i have had no help from NHS at all and limited private interest
An i paid alot of money for CTA and consultants who are in denile and no sense of urgency
If anyone knows of a place i should go for diagnosis please let me know UK isnt good place to be this unwell
London Clinic seems to be an idea but they will be slow as usual
Sorry for the violins :¬(
Welcome to our group @madusmacus! Please remember that even physicians here cannot give medical advice. Our members are able to give personal experience and knowledge which is great for a support group. If you’re having these symptoms, I’d suggest getting to a doctor ASAP.
Please remember that our arteries and veins can be tortous, it means squiggley. They rarely look like the drawn pictures on the internet. Also, try not to diagnose yourself, it’s a bad rabbit hole to go down for sure,
I have a few questions, if I may. What did the consultants say? Were there not images taken when you had the ischemic stroke? Did the consultants not look at the image they took as well as the ones taken when you had the stroke? Why do you think the consultants you hired are in denial? Sorry if the questions sound harsh, I don’t mean them to be, just trying to get a better understanding.
I’m not in the UK so I unfortunately cannot recommend a place in any of the European countries. France, while not in the UK is supposed to have a great knowledge and experience on aneurysms. You might be able to send your original images to a surgeon there to have a second opinion. You can in fact send images anywhere in the world for a second opinion. I would try sending them to London Clinic. Contact their Neurosurgery department and ask them about getting a second opinion. Here in the States, that’s all it takes - a phone call and images sent. I hope it’s the same in England.
To answer your question about staying in bed crying - please don’t. Not at all, has it done you any good? A nice walk about on a pretty day will do wonders. Even if it’s raining, just to get out of your home is good medicine. One of our members recently posted advice their doctor advised - basically it was to do whatever they wanted except heavy weight lifting. To that I would add hydrate, eat protein and eat fiber. It was the advice my Neurosurgeon gave as she didn’t want me straining during a bowel movement.
Please stay in touch. I hope members from the UK can add their experience with your health system.
All the best,
Well said @Moltroub…you need to seek better advise @madusmacus if things aren’t progressing in your favor. No true professional will shrug you off with the diagnosis you’ve been given. Staying in bed and crying, unless exhausted is not a good approach in my opion…as mentioned, get out of the house if you can and simply go have a walk, slow and steady then have a seat on a park bench, look around at things that make you feel good, smile if you can and be at peace with yourself and your thoughts…as for London Clinic, I would give it a go if you feel things are at a stand still even if, as you say, they will be slow as usual. Take care of yourself, you will get through this and get the help you need, cheers.
"What did the consultants say"
Due to Covid NHS decided they could not to do the promised CTA or the 6 week followup consultation,
NHS also would not give up my MRI images made at stroke time - i would have to jump through many hoops
So i had to pay privately
Private “Geriatric Stroke Conultant” Was only interested in Stroke realy
I did show him the 3d reconstruction and it was clearly seen on the raw CTA data but
He reported what the radioographer said which was all was ok
i guess they were not into anyurisms just strokes
(Its realy complicated because i got to hospital in 45 minutes and they didnt offer me Clot busting they jsut said brain cells were dead so no treatment)
I personaly belive i had a small bleed not a stroke or a bleed that caused a clot
Sorry this is complicated :¬(
He has finaly offered to get a “specialist” to look at it again but im just left hanging around
I belive the consultants want the best outcome for me so they are not looking for bad ones (denial)
I need to find a neuro specialist that will go though the diacom data with me and diagnose
I have uploaded raw image of my abnomaly that the stroke consultant was not interested in
seems in uk all the consultants do their speciality and its hard to get it all looked at globaly
Thank you for your reply to my staying in bed idea - i belive a small walk would do wonders and i have my BP stable at rest no so much when moving
I have calmed down a bit now accepting it and the other anomolies i have not mentioned
Time will tell
Thank you Very Very much for talking to me its nice to know im not alone in this world
@Al.C Thank you i will take walks and generaly try to cheer up appreciate your input alot :¬)
@madusmacus hey Mac! First let me tell you how impressed I am with your 3D renderings. So much so I wish I knew how to do that! They are fantastic!
COVID-19 sure has changed the medical field world wide hasn’t it? My last procedure at Wake Forest Baptist Medical Center here in North Carolina was incredibly different than the other 3 times. I’m surprised they wouldn’t do a telephone consult or one of the other types where you see the person like Zoom or FaceTime We actually helped my Neurosurgeon do the correct clicks the first time I saw her on computer. It was hilarious!
For me to get images from my hospital, I simply have to call the records department and tell them what I want. I usually just go down and pick them up, even with the pandemic they have to provide my images to me if a d when requested. I accidentally asked for all my images to be sent to my Neurologist…he got them, even the mammograms LOL. I’m sorry you have to go through more hoops, but I think it’s important that we maintain all our medical records. I once had a heart angiogram performed which showed a different reason for my heart issues. The Cardiologist failed to put it in my medical record in his office and for some reason, the hospital didn’t have the actual images. Luckily, he had drawn a picture, go figure
BP is always different at rest and with activity. For everyone I’ve known with ischemic strokes, their doctors have told them all to do mild to moderate exercise. What did your consultant advise?
Here in the States, the window for tPA is 3 hours from onset of symptoms. It’s a miracle cure if one can get to hospital in time. As I understand it from reading on the American Stroke Association website, MRI’s can tell immediately what happened with a stroke. Here, Emergency Departments do a CT scan as it is supposedly faster and will show a bleed. MRI-As also show a bleed, they just take a bit longer. I’m glad you were given the MRI.
I would challenge you in the kindest of ways, that you really didn’t need to pay for a private consult as you may be impatient and didn’t want to go through the hoops. I would be the same…
I also hope you accepted the offer of getting a specialist to read the images. It is imperative that as patients, we are patient. Since the pandemic hit our county, we have seen more air ambulance or medflights going to the big cities more than at any other time. This alone tells us how bombarded the hospitals and their medical teams really are. The Neurosurgeons where I go to our limited down to about 20% of elective surgeries because the hospital needs the rooms for COVID cases. Please be patient.
All the best
@Moltroub thank you for the information its good to read
NHS didnt give me MRI post stroke but…
Private had CT Angiogram with contrast (my images were from that)
The data is Diacom format and i asked for cd when i had it done in case i had to go elsewhere
I Used a trial of software called Radiant but in the end in my images i used a free program called 3DSlicer
It ended up better you can do more but slightly harder to use
Im glad in a way i didnt get tpa because if it was a bleed things could get uggly (guessing maddly)
Now with my undiagnosed aneurism im scared they have me on clopidegrel 75mg
guess i have to wait for the specialist to check and report back to my geriatric stroke consultant
I will waitout a few more days befor panicing again
Im not good with waiting when im scared
Thanks again for chatting
Good Morning Mac! Hope you are doing well today. Here in the States the usual policy is to do a CT for someone suspected of stroke to ensure there is not a rupture. CTs are also cheaper. CTs as we had to learn with BH don’t necessarily show an ischemic stroke for about three days afterwards. However, an MRI can show both immediately. At least this is what we learned. And you did share that NHS wouldn’t give your MRI without going through hoops. I would go through them personally and send the MRI and the CT to London if I were in your shoes.
One thing I’ve learned over and over here is that we must be our own advocates and do whatever it takes to get the proper care. So be strong!
We also have hospitals that use daicom software. I made a topic for Apple users to access their images once in hand with free software. Thank you for sharing the software to do the 3D. I will give it a go when I can access our computer again. BH has taken over the room our computer is in and it’s not comfortable to use right now. When the pandemic is a bit more controlled and BH goes back to the company office, I will!
@Moltroub I have started to become a PITA I tried engaging my NHS GP today with little effect
“I cant see you I am on vacation for a week starting tomorrow”
But i went there and gave him lots of info images and SD card of my problems and images
He promised to to face to face in a week time at 12:00 - to me that is a life time away literaly
He was up front saying he wouldnt understandf it anyway
but he is going to POKE my private consultant maybe that might make them speed up a bit
Thanks again for chatting :¬):¬)
That’s great news Mac! I’m very proud of you for sticking to your guns. We do have to allow our physicians a life as inconvenient as it can feel. I had a rant about a radiologist on here that took four months to do the final reading for an MRI and the horrible experience I had with one of the techs. My Neurologist is not licensed or certified to read images but he was very happy to get everything from the hospital that I usually have my images done at, usually he just gets the readings, even from the hospital he wanted me to go to that took 4 months. My PCP is not allowed to interpret images either. There is special training that doctors have to have. Fortunately, my Neurosurgeon is trained and in fact trains other doctors to read brain scans, etc. but even she has to have a holiday. They allow someone to re-energize and not worry about their job, don’t you think?
Again, I’m very proud you are standing up for yourself! Good job!
@Moltroub Hi :¬) - its very strange i had an invoice and letter and gp letter from my “Geriatric stroke consultant” today
He was adimant that there was nothing wrong and the report from the radiologist was ok
(although i have no such report and thats a bad sign)
He has refered it to a specialist because i insisted
I am stlill very scared but I know there is nothing more i can do at this time
Time will tell what happens to me but i will report it here might be of someone that comes after me
Have a nice evening/day Byeeee
Good Morning @madusmacus Here in the States, we have what are called patient portals. It’s where we can go in and look at the reports from our doctors. I have different ones for each specialist and my PCP and my local hospital. If a radiologist has read an image, it’s under the hospital it was done at in my experience. Some members here actually ah e their images on their portals as well! Mine are not that sophisticated, yet. Perhaps you have the same type of set up in the UK.
Has your GP ordered any type of therapy for you? Our local cardiologists always put stroke victims into outpatient rehab, at least they used to prior to the pandemic, if the patient was able to go home. I remember something about the UK or one if it’s countries starting a wonderful at home rehab via virtual meetings that I saw several months ago. They had Speech, Occupational and Physical Therapy available, I believe. Something the NHS and one of the foundations are doing. Are you able to find that information for yourself?
Remember to breathe and take walk abouts.
@Moltroub Hi :¬)
In UK I got discharged from stroke unit with promises CTA followup etc etc - these never happened due to covid they said
I was discharged from Stroke unit in 2 days as i was getting my ballance back and “you are one of the few that are covid negative”
I was given excersizes that i fillowed and im back to 95% full banance and walking
Problem is im gettng behnd eye headaches and neck aches and quite bad left eye ache (many squint operations in the past)
The finding of Blackbery shapped blobs haning off a right artery has me very worried
So much so i forgot my cardiologist apointment last night - DOh!
now I have to wait 5 weeks to see him again even though he is provate seems he has 1 clinick a month
My fault but i might have to start again with another one
I got the name of the failed radiologist and the nme of the nerologist being used for specialist help
I also have the geriatric stoke consultant calling me today - all apendages crossed
GP deemed i as recovering very well and need nothing other than antiplatlet statins and betablocker(POTS) so nothing offered
I am worried about antiplatelet (pravix 75) if i have aneurism (not ischemic stroke) as a rebleed would be more of a death sentance than it already is :¬(
Anyways enough waffling from me :¬)
Many hhanks for talking helps alot :¬)
Mac, Here’s the programme I was mentioning NeuroRehab OnLine @ Queen Square | UCL Queen Square Institute of Neurology - UCL – University College London
Emilia Clarke’s Same You Foundation helped get it on. In fact, for all the members here, her foundation has a lot of good information on how to better aid our recovery and help for families Recovery@Home - SameYou
They post the most recent first, so I suggest starting on pg 4 or not, your choice
All the best,
Hi ill read up on that link :¬) off to bed soon
My consultant phone me and told me i had no problems at all and not to worry
Im goign to do that for a coupple of days till i hear back from the specialist
I need a worry rest :¬)
I found out that the berries were hanging off of Right Internal Cerebral VEIN not off some artery
this is weird but im not clued up enough to know what it means from possible Aneurym point of view
Is it worse or better than a Artery - prolly the same
Anyways Im off for a rest and read that link
Mac, hi. I’m an interloper in this community because I don’t have an aneurysm – I have an arteriovenous malformation, which is a connection from the artery to the vein without going through a capillary bed. So what I can add (I think) to help is that veins are low pressure vessels whereas an artery is a high pressure vessel. Thus, a bulge of the artery wall is a concern because the artery is designed to hold high pressure blood (and the bulge would indicate a weakness) whereas the veins don’t have high pressure blood flowing through them, so less likely to grow any bulges and I think even if they do less likely to give you a high flow rupture.
In the case of my AVM, it was admitting high pressure blood straight into a vein, creating the risk of a rupture because the vein isn’t designed for the pressure.
So, if the bulges you have are in a vein, it may not be something to worry about. Definitely to get checked out but I would worry less about them.
Are you being seen at NHNN at Queen Square? We have quite a few AVM patients seen at NHNN and I’d rate them highly. I was seen up in Nottinghamshire, though.
What I found while I was waiting to be seen for my AVM is that neurosurgeons seem very calm about these things and you and I fret our way through the whole thing. I had to wait from an initial diagnosis in August 2016 round to April 2017 to have an “elective” embolization on my AVM and each month that went by I felt it was having a greater impact on me. The only recourse I had was to pester the hospital – I got to know the consultant’s secretary and the neuroradiology specialist nurses very well – and on several occasions I went to my GP for support. Not all GPs “get it” or seem interested and I found that once I’d decided which of my GPs was interested and concerned, I would ask to see her each time. I am sure it was her report to hospital that got me seen in April 2017.
Hope something here helps,
Moderator in the www.avmsurvivors.org support forum.
Thank you for the information its comforting to know venal pressure is less so it feels less of an imediate problem now
I am seeing geriatric stroke consultant in private uk hospital who has asked a neurosurgeon to double check the radiologists all clear on my CTA (contrast) how he never saw these blobs is amazing
I am in a holding pattern now but im starting to get weird eye problems so im not sure whats what anymore
I will report back if i can when i find out more
Thank you for taling the time to talk to me
P.S. i finaly got a face to face with my GP next tuesday but e said it probly wont be able to diagnose anything but at least i can talk to someone
GPs can be great advocates. If you can get them interested, good. Let us know how you get on.
I’m not sure what a geriatric stroke doctor does but I’d definitely get yourself referred to neurosurgery. If you can persuade the GP to refer you there, I think you should be better set up.
@ [DickD] :¬)
Geriatric stroke consultant in the UK is someone trying to exlain what type of stroke i had and what to do about it
He got my CTA contrast ordered privatly and told me what the radiographer said afterwards
The radioographer said i had no problems at all - this is clearly incorrect so i am having a second opinion with a neurosurgeon (no idea when he will do this though)
Hopefully he wont gloss ofver the internal cerebral vein berries (in image) i have and probable carotid aneurism i saw myself
Anyways they are all so disjointed in this contry all dealing with small issues not overlapping
Thanks have a nice Sunday byeeeeeeeeeee
Well, whenever you get to talk to the neurosurgeon, you need to mention the berries. I saw a neuro-interventional radiologist for my AVM – the initial diagnosis was that the best treatment for me was embolization, so it was most useful for me to see him as the one who would undertake the procedure with me. But whoever you see in neurosurgery, they should have a multidisciplinary meeting to discuss your case to agree whether embolization, pipeline, clipping etc is best.