I’m due a catheter angiogram soon. I was diagnosed with an aneurysm in 2019. Then an MDT report I’d seen said ‘aneurysm and infundibulum, offer patient catheter angiogram, consider stent…’
When I asked the dr - do I have both, he said ‘no’. I said - then why do I need an angiogram? He replied ’ because we don’t know how to tackle it’.
After that, he started saying - it’s either one or the other however every other Dr I’ve seen e.g. in A + E when I had head injuries and a neurologist, all say it’s definitely an aneurysm.
Due to the headaches after a recent fall and bang to head, I thought it best to find out, hence I requested the angiogram.
There were a few reasons why I declined it 3 years ago. One - the confusing info given by neurosurgeon and another reason - he said he’d only ask for a left sided angio. It’s a left PCOM aneurysm.
I have a strong family history of AVMs, aneurysms and fatal brain bleeds. Previous MRAs and CTAs have not picked up anything other than the PCOM aneurysm however, they say ‘no visible AVM’.
Should both sides be checked, I think it’s called a 4 vessel check? I just asked the neurosurgeon and he said ‘no, just left side’.
I hope someone can help with this query also.
I imagine it’s always up to the Neurosurgeon, mine always checks both sides since I ruptured. I can’t say if she took the time to check the right side when I did rupture, I imagine that she was busy on the left… In the beginning of all the rechecks and repairs, she said it was better to be safe, just in case. I can’t recall if it was her, a Resident or Mr. William (her wonderful PA when I first started) said because of the rupture, it’s common for someone to develop others. The aggravating thing is that I’d have an angiogram, she’d see it needed more coils. Wait a week or two, have another to do the fix. Apparently they don’t block the time or the insurance doesn’t allow the repair to be done, I’m not sure. I did ask once but can’t remember why they do it that way. Seems a waste of time to me.
Because of your family history, I would suggest you tell him how anxious you are even if you’re not. Explain that it’s causing some stress and would like that he just go ahead and look for your peace of mind. I’m not sure if it will help but I believe it never hurts to ask. It doesn’t take that much time to check the other side. But in the end, it will depend on him and the insurance you have in Scotland.
Another thing you might do is to check the internet on what’s the common practice in Scotland for cerebral angiograms. You will have to be cautious if you find out it’s checking both sides, doctors really don’t like lay people to Dr. Google their issues.
Hi Moltroub. I hope you are well. I now just want it over with and face whatever they say it is. You are brave; it’s a lot to think about and the waiting can’t have been easy. How many aneurysms did they repair? That’s a tough journey, one that most people wouldn’t know how to tackle.
My bp was high at my pre-op so GP put me on tablets.That and a small hole in the heart, concerned them so I was called in again for ‘more checks’. I didn’t need them as the tablets worked.
I’m keeping busy. I put new handles and lock on the bathroom door, fitted a new soft close toilet seat and now about to tackle my adult daughter’s house rabbit’s mess.
Hope you have nice weather, it’s nice here today.
Well enough, thanks so much for asking! My you’ve been a bit busy. I like to stay busy as well. I live in the piedmont of NC so weather isn’t on my side right now. The weathers been a bit hot and humid if I do t get my outside chores done by noon, they have to wait😅
I’ve only had one aneurysm so far, a small one at 5mm, multilobed with more than 24 daughter sacs (Doc quit counting) but since it’s up in the LICA bifurcation at the Circle of Willis, it’s been a bugger to repair. I learned to basically ignore it for the best part of the day and acknowledge it for about 15 min/day. It is what it is and I don’t want it to take control of my life,
I think the hardest of the four procedures was #3. Dr. Q-W didn’t know if she’d have to crack my skull open or not so a lot of apprehension on how I’d come out of it. I think she’s saving the craniotomy in case I need the pituitary tumor removed. I get it checked every five years. It’s growing but not big enough to be of any concern. I ignore it, except with the doctors. It’s a great reason to explain the weight gain 
. I lost no weight whilst in ICU so she did an image specifically for the pituitary gland and found that little bugger. Guess one could say I’m a bugger head is what I told Dr. Q-W. I got to add it to my I’m a wired, caged air head.
For every procedure I’ve had, be it a fix or just an angiogram, I get my house and House in order. The risks for me kept going up. So we made sure our will was good, it wasn’t and we redid that adding a Trust. Trying everything the Elder Attorney knows to do so the State can only get a small amount if any. I strongly encourage everyone to have a will at the least, I’m not sure how it is in other countries, but dying intestate (without a will) means the Clerk will just follow the law and not necessarily what you would like to happen. With friends who had spouses die intestate, it was a nightmare.
Then I do all the little chores that I seemingly put off. The day before any procedure or imaging, I make sure the yard looks decent. We go out with friends, I call family who live far away reminding them I’ve loved them since they were born. They usually let the family members I no longer talk to know. I can’t do drama and chaos so it’s been a smart move to get away from them.
My spirituality may be a little odd to many, and though I talk to God on a daily basis whilst doing my piddling around, I always ask for my Doctor and her team to be watched over, give Dr. Q-W a steady hand and clear mind so if anything goes awry she’s there, BH to be watched over those sorts of things. I’ve never asked God to watch over me, I figured that’s being done since I’ve survived this long. Don need to ask for what I already have. I do remind God if and when I kick the bucket, I’ve got a lot of questions that need to be answered so be prepared.
Hi Moltroub, I’m not a fan of very hot weather…only a fan when it’s snowing and icy here. The hot weather makes headaches worse. ‘Daughters’ can be more difficult than sons 
24 daughter sacs…
You are definitely more brave than I can ever be.
I was a lone parent to 2 babies and put my faith in God when going through the difficulties of raising them on my own and working.
There were many reasons why I cancelled the first angiogram; one was - what will I do if I am told I need treatment?
I had the angiogram and it went well, so well that I now feel like a fraud being on this forum. They say it’s not an aneurysm, it’s an infundibulum (natural widening of the PCOM opening at the internal carotid). I think I can now be discharged but will probably get a private CTA or MRA scan done in 2-3 years, as some journals say they still need to be reviewed.
This forum has been a great source of help to me. Many thanks again Moltroub and DickD.
That’s great news! I’m glad that the angiogram went well, I sometimes hold my breath waiting to find out from our members. Let’s do a happy dance!
Please don’t feel like you’ve been a fraud here. One doesn’t need to have an aneurysm to join and don’t you have a big family history of brain vessel issues? Lots of things can happen to our cerebral arteries and you’ve brought one more piece of the puzzle to us.
This is how I look at it, we may have several members here and those lurking on the internet who might be in the same boat. They receive some news and then conflicting news all the while knowing what their family or maybe friends have had. I imagine it’s very stressful. You have shared your journey and that’s going to be a big help for a lot of folks! Thank you so much for it! I hope you continue to pop in every now and then.
Thank you Maltroub. I was meant to get 1 letter from the hospital - from the radiologist who did the angiogram. He said via email that he would confirm that it was an infundibulum and that I could continue to drive. He didn’t send the letter but asked the neurosurgeon to write instead. The letter has raised a couple of questions.
I am aware that I have bilateral brain basal ganglia calcifications and I keep thinking back to that Multi Disciplinary Team report that was left on the screen by mistake - where it said I had 2 lesions.
The letter says - no identifiable aneurysm. Does this mean they see something (2nd lesion?) and they still can’t work out what it is despite the angiogram?
He then wrote - No further neurovascular imaging is advised. I may be nit picking but shouldn’t it say ‘required’ rather than ‘advised’, if all is normal?
Prior to finding out about the lesion/s in 2019, I often did long road trips with my children, from way up north in the Highlands, to Southern England. I want to go back to doing these trips but not if there might be something in my brain that they cannot decipher.
Am I reading too much into this?
My family history is of fatal brain bleeds due to ruptured AVMs and aneurysms, 3 close family members.
It’s a conundrum for sure! I wonder why the radiologist wouldn’t write the letter. Can you access his notes through your patient portal?
I think the letter was just addressing aneurysms, which they didn’t find (happy dance for you!). If they saw something else, I would think it should have been in the letter, but I would make a call or go through your portal to make sure all is good. I might not mention the screen was up, just ask what the two lesions are that they saw, if that makes sense. If they didn’t see any, the screen shot may have belonged to a different patient. I’ve had a resident pull up the wrong images and we would question it as it didn’t look correct to me and then Dr. Q-W would come in and ask the resident if they were teaching a private class or something similarly hilarious.
I actually looked up the definitions of required and advised. American English is not quite the same as English in England which I think would be more like English in Scotland. (There were political reasons back in the 1700-1800’s to be different than England including how we use and spell words). I couldn’t find them in any medical dictionary so I may be searching the internet incorrectly. “Required” in the American dictionary means needed or essential. “Advised” means thought out, considered …likely to be the best course of action. Similar but definitely not the same. I think the doctor’s use of advised is meaning that there’s no need for another at this point in time after viewing the image. They’re able to see everything they need to. The use of advised indicates a safer route to me and keeps a window open for the future if that makes sense.
I realize with your extensive family history on ruptures be they AVM’s or aneurysms, that would make any one stop in their tracks! Please don’t stop…never stop doing what you love to do because of the “what if’s” that come along life’s path. There are far too many of them in my opinion. Turn them around and ask yourself what if I don’t do this, what will I miss out on?
I may not be the best person for advise on this matter. I am the youngest of four and learned to be oppositional at a young age LOL. After I was able to get over the pain of rupturing I just started doing what I wanted to. Granted it caused a lot of angst with not only friends and family, but my Neurosurgeon as well. It’s my life and however long I’m still walking on the grass and not feeding the roots, I won’t let my health issues control me. I keep having my bucket list growing and hopefully one day will get to mark them all off. So if I ever get to Scotland, we can take a walk about in the Highlands together! I’ve put it on my bucket list…
Thanks Moltroub. I’m happy it’s not an aneurysm. I had asked the radiologist to confirm I can continue to drive and he said in an email ‘ok’. That letter was not posted out (confirmed by secretary). I’ve asked for that letter - we don’t have access to our own records here. We need to make an access request that can take weeks as they ask for 2-3 bits of ID. If he’s said ’ not required’, I’d have been on my merry way. I remember when my son had a snowboarding injury to his back at age 12. The orthopaedist played around with words also which made me think he was hiding something. I was right, the letter he sent to our GP stated my son had an arachnoid cyst. I’m not foolish - I would never ask for surgery on my child’s spine but I used the info (given by GP) to make sure my son knew that he had to be careful with his back and to tell me if he felt tingling etc.
I’ve written a letter to the radiologist which I will email. I keep redrafting it as I don’t want to come across as neurotic. I just want to know as I still have daily headaches, dizziness…from the fall I had. An answer to see if the fall caused traumatic damage is all I want.
Yes, I group walk in the Highlands would be good. Our closest ‘hilly’ easy walk is in Argyll Forest. I like the beaches further north, just past Fort William. 
I used to ditch high school after my car accident and ride my bicycle to the beach. One of my teachers followed me down and sat with me a good while watching the waves. Ms. Shields was the first person I could talk to about losing my horse, splitting my sternum down the middle and having 18 dislocated vertebrae. She helped me a lot. She and another teacher got me in college part time when I was 16. I still love the beach, some are better than others.
I truly wish Doctors would be straightforward and not beat around the bush using semantics as much as an attorney. I like the “it is what it is” approach and not all the fluff. Once we know what it is, we can better handle it in my opinion.
I’m really happy to read you are self advocating, it’s something we all have to learn to do. Fortunately when I write something I feel so very important, I have BH to proof read it. BH is a master of the English language in my opinion and catches improper sentence structure as well as grammar. (Think Grammar Police😂). When my anger comes out, BH can better form what I want to say in a nice way. If you want, I can ask BH to help with your letter, just let me know. Or @DickD who has better knowledge of the UK might help you, you could send him a PM.
I’d say that in the UK the interventional radiologists work under the supervision of the neurosurgeon, or at least, I was referred to a neurosurgeon, all of the interactions I had were with the consultant neuro interventional radiologist but all of the letters were in the name of one of the neurosurgeons, as I was being seen in their practice. So I think that is just a weird NHS hierarchy protocol thing.
Regards “advised”, I think doctors in the UK pride themselves on writing advisories to each other: I’m not sure they ever use the words “must” or “required” or “need” and so again, I’d see that as just the writing style of the doctor. I also suspect that from a legal standpoint they may never use “must” etc in case a doctor further down the line omits to do something and might be sued, so there may be a practice of mutual defensiveness going on. Equally, further examination maybe an unnecessary stress for the patient or a waste of previous resources so sometimes their focus is on these things. I wouldn’t read into “advised” any weaker meaning.
My neurosurgeon isn’t the best at answering questions. When I asked about the MDT report he inadvertently left on the screen (the one that said there were 2 lesions), he refused to answer my questions (2019), saying he needed the angiogram done. The angiogram showed that I could be discharged - that’s good. I was discharged from neurosurgery. I then asked for an appointment with the neuroradiologist so that I could look at my images as I’m still experiencing headaches, neck pain, dizziness, tinnitus, even though it’s 3 months since the head injury that I received from falling in the street. I was told I could have one. I was later told that the radiologist needed to talk to the neurosurgeon. I was given the impression it was to do with driving and DVLA. As I had been discharged from neurosurgery, I thought that was a no-brainer. Then out of the blue, I’ve just been told that the neurosurgeon wants to be at the meeting with the radiologist. I know that the neurosurgeon has kept facts from me (the MDT report from 2019); why would he want to be at the meeting if he’s discharged me and said ‘nothing to see here’?
I had a check done on my heart in 2020. It showed I have a small hole in my heart and slight LAD bridging. The cardio radiologist was completely frank and sent me the report. The cardiologist told me about the findings also and discharged me. Because cardiology were upfront, I know what I’m dealing with, with my heart . They were forthcoming with full facts, which is what I want the neuro team to do.
Would you ask why the neurosurgeon wanted to be at the meeting and would you say you didn’t want him there? They’re trying to tie up an appointment when they are both free but that could be months down the line.
Like I say, the interventional radiologists where I was seen were “under” the neurologist’s practice and a good proportion of my letters were from the neuro, despite the fact I almost only ever saw the IR. So it could be a hierarchy thing but it could be that the neuro wants to somewhat control the conversation.
I’d have a chat with your GP about it and see if they have any knowledge of doctors hiding stuff from patients. The GP may either have the info, may be able to request the info or may offer advice. I found my GPs varied quite considerably. I eventually worked out which one was on my side and if I could, I saw her about my concerns because I knew she was motivated enough by a rare disease patient to find out some things (and shove a rocket up the hospital on the occasion that I was getting worried I was waiting far too long for my op).
I’m sure they see these things regularly and will have their own strategies as to how to help.
I’ve otherwise found that raising a formal complaint has the same effect as a rocket.
Let me know what works!
Best wishes,
Richard
Thanks DickD. I wrote to them asking that I just see the radiologist as the surgeon has signed things off as normal. My headaches are BP related for sure. I had a headache earlier, checked BP and it was 157/106. Not normal. I’ve booked an appointment with another GP for next week to discuss this as the usual one keeps saying it’s a coincidence. That’s (BP related headaches) since I had the head injury.