Hi Again

General
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I had left matters to get on with life but things came to a head when I fell a few days ago. Stupid me - I wasn’t drunk! One second I’m crossing the road and the next, I can see the world going by at an angle and realising I was going to bang my head hard onto the pavement and just waiting for it to happen. My hands were in my pockets so couldn’t protect my head. I fell onto the left side, which is where my PCOM aneurysm is. A and E checked me out, did a CT and said no bleed but ‘you may have a small bleed so we would like to do a lumbar puncture’. I don’t know why did it (wasn’t thinking staright/ they wouldn’t let me go out for a walk or to the hospital shop, maybe) but I eventually, after a 5 hour wait, discharged myself. My (adult) daughter was SO annoyed when I texted her that I had done this. I went outside felt dizzy and went back into A + E, within 20 minutes of discharging myself but this time I was told - ‘you look fit and healthy, why don’t you go away, get something to eat and rest’. I’ve been doing that but I’m definitely confused e.g. I called my GP to ask if my appointment was on the 5th of November or the 12th of May. I don’t remember saying November but it was the receptionist who said ‘November?!’
I have a left headache and a painful neck/ brainstem, light headed, extremely tired.
I think I may need to contact my neurosurgeon who last did a CTA 2 years or so ago but I’m hesitant. I still can’t get round the following - back in 2019, he left the MDT report on the screen, which said ‘PCom aneurysm and large infundibulum’, to do a catheter angiogram and to offer surgery (think it said ‘stent’) but verbally he keeps saying ‘we don’t know which it is’, even when I pointed out that I read the report. If this dr is going to potentially work on my head, I need to trust him, surely? If I was told, as written in the MDT report,that I have both an aneurysm and an infundibulum, I would have agreed to the catheter procedure in 2019.
(1)Do drs hide facts as important as this from patients? My kids think I’m neurotic but I know what I read on that screen.
(2) Say he’s right and I’m wrong for talking sake, what would the catheter angiogram show that the CTA doesn’t? He said that he wanted that done because - ‘we don’t know what it is as it’s at an awkward angle’. Even if a catheter angiogram is done, the lesion is still going to be at an awkward angle so what exactly will this procedure show him? I also remember him saying ‘we don’t know how to tackle it so the catheter angiogram will help us’; which again points to them knowing that it is an aneurysm.
(3) If I go private, without telling him and paying for a CTA + Neuro dr appt, will this irk him?

Hope someone has some insight on the workings of a neurosurgical department.

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Hey Feefo,
I’ll try to answer your questions

From my experiences, yes. Some medicos work on a ‘need-to-know’ basis and one theory is that the less the patient knows the less they will stress. But the reality, for me, was rather the opposite, I went down all of the worst case scenarios track, stressing myself (and everyone around me) out majorly. When they only give us partial information often we fill-in the blanks for ourselves, often with ‘the worst case scenarios’.

A CTA is a non-invasive scan and in VERY layman terms is like taking a photo of a building from the outside, you can see the external walls but not the internals. They maybe able to see the changes/abnormality, but what is it’s actual structure? To see the structure inside, placing a camera via a catheter is going to give them a more direct visual image.

Will this irk him? Possibly yes, but you have every right to ask for a second opinion, in fact, I’d recommend asking for 2nd opinion. Every neuro I’ve seen seems to have their own view, their own opinion. Every medical view is open to interpretation, but it sounds to me that your neuro is trying to obtain the fullest information possible and that’s a good thing, and even after obtaining a 2nd opinion and a CTA it may still be recommended to have an angiogram to view it from the inside.

Insights?? I’m not sure we can call them ‘insights’. Having been on this neurosurgical roundabout for many years (20+) I’ve found the workings have changed somewhat over time. Some medicos are of the view that the Dr is always right, some can be a little more accepting of other views and trying to navigate it all can be a huge minefield for us, the patients. I don’t believe one dr is right and the other wrong but rather they have differing interpretations. I had one neuro recommend a ‘Wait’n’watch’ approach, I had another recommend surgery. My view was ‘I have this ‘timebomb’ in my head and you want me to WAIT???..’ the stress of it all was enough for me to go down the surgery line rather than waiting. The surgery to ‘fix’ didn’t fix at all and I’ve required 5 further neurosurgeries and still things have not been resolved completely. I often wonder if waiting and watching may have shown another course of action.

Now, I have to say here, I am merely a patient, not a Dr. but these have been my experiences in trying to deal with the medical fraternity, but I must say I still haven’t fully figured out ‘the workings of a neurosurgical department’.

Merl from the Modsupport Team

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Good Morning!

I agree with most of what Merl says. My experience with Neurosurgeons is they have been quite honest with me which I greatly appreciate. I don’t have the length of experience Merl has, and I’ve only had two Neurosurgeons - one for back surgery in 2012 and then my brain surgeon since 2013. She has had to go in for repairs four times for my ruptured aneurysm. I do trust her as she explains everything in detail and why I need another angiogram and then why I need another repair. I didn’t have an opportunity for a second opinion since the first time we met, I had ruptured.

It sounds as if the Neurosurgeon you went to wanted an angiogram and like Merl explained, it’s the best way for Neurosurgeons to actually see the arteries with a little camera which is fascinating to me. I’m in the State’s and have no idea what a MDT report is but I think it may be the Radiologist’s report. The “awkward angle” was probably due to the ability of the CTA to give him a really good look at the artery. Did he suggest another CTA to be scheduled? Sometimes Neurosurgeons will schedule follow up images every so often.

Second opinions are good in my book. It’s how I happened on my first Neurosurgeon for my back surgery. I had gone to an orthopedic surgeon whom I didn’t care for at all with his condescending attitude. That Dr. gave me a diagnosis, said I couldn’t pronounce it much less spell it and all I needed was PT. When I went to schedule the PT, it was on the other side of the county and the girl at the desk said I couldn’t schedule my appointments around my work schedule. I explained to her that I certainly would as I was the paying customer. I ended up walking out, back to my then PCP and requested a different PT facility who actually allowed me to schedule appointments around my work schedule! I had health insurance through my employment but I think you have NHS and I don’t know how it works. Medicare which is what I’m on now allows me to have a second opinion.

If you seek a second opinion and you have to self pay, what happens if that Neurosurgeon also wants to do an angiogram? Will you then have to pay out of pocket for it as well? I recall one angiogram I was scheduled for and the lady in the billing department asked how we were going to pay for it. I asked if there was a discount if we paid up front as our local hospital does. She said yes, BH said how much will it cost and it was over $100k, they don’t bill insurance if you take the discount.

When we see a Neurosurgeon, it can be very stressful. Whichever way you decide, take someone else with you. Have a list of questions at hand and make sure you understand the Doctor with what they’re saying. If you don’t, ask for clarification. If the person you go with doesn’t understand the doctor, they should also ask for clarification. If possible, take one of your children, or your partner, so they can better understand what is going on.

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Many thanks for replies Merl and Moltroub. The MDT in the UK is a Multi Disciplinary Team meeting that involves other neurosurgeons and neuro-radiologists. Thank you Merl for explaining the catheter angiogram like viewing inside a building and the CTAngiogram like looking from the outside - that helped a lot.
The A+E department called my GP after I walked out and asked for him to review me: that appointment is scheduled for 10 days from today. I had wanted to do ‘watch and wait’ (prior to falling) but the fall has scared me. The language used in A+E also scares me, now that I think about it; the first dr used words like ‘catastophic bleed’ as a potential outcome of the fall. The headache is still there but not so severe that I can’t get up and do light cooking etc, still light-headed and I’m mixing my words on the odd occasion.
I need to get a move on and make a decision, this I understand well as fatal brain bleeds run in my family. My mum had an AVM and 2 brain bleeds - she survived the 1st one but not the 2nd one. According to the drs she had an associated aneurysm which caused the 2nd bleed but I had always thought AVM bleeds were more severe, so how did she survive the initial bleed from the AVM (I think about this to myself)?
My mum declined treatment after her first one and that was mentioned in the review after her passing away. I remember being angry with her when she declined the catheter angiogram after the first bleed and here I am, doing exactly the same, much to the annoyance and fear of my daughter.
The private appointment will still throw up the same questions - ‘it’s at an awkward angle so we need a catheter angiogram’. I need to face facts that I need the catheter angiogram done asap as otherwise, I may meet the same fate as my mum due to being labelled a non-complier, and potentially being denied treatment should I suffer a ‘catastophic bleed’.
If things get worse, I’ll contact my GP before the scheduled review appointment, and if stable will discuss contacting the neurosurgeon, with the GP at the pre-planned date.
Many thanks again and hope you are all well.

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@FeeFo
I think it’s a very good decision you have made. Don’t wait for the catastrophe to happen, do what you can to control the situation. I know it’s easy to “ chicken out “ but believe me, if you can avoid a rupture to happen, that’s the best thing you can do. For us who survived a rupture, it’s not an easy walk…… Best of luck to you and a long and happy life.

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Thank you for your kind words Oct20. I sense that your journey has been an arduous one. I hope you are in good health.

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Hi @FeeFo

I thought I’d say “hi” and say that I’m in the UK and I’m not an aneurysm patient but an AVM patient.

If you’ve not had an angiogram yet, I’d say that (while no procedure is completely risk free) I got through mine just fine. I’m not at all good with operations and needles and blood and all that but I’ve had three angiograms (and an embolization) and I got through the set just fine. I can faint if I cut my finger (actually, I can faint at much less than that!!) and I got through it all very well. I would say that we worry about the unknown far more than is helpful.

Regards AVM ruptures v aneurysm ruptures, i think it all depends on how big or how complex and how major an artery is involved as to which could be worse. I’d look upon them as equal tbh.

I see the MDT meetings as an excellent method by which the opinions of multiple doctors and disciplines are involved in making a recommendation for you. I see this as good because it should lead to a balanced view of what is best for you, removing the bias or ego of one doctor.

Very best wishes,

Richard

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Hi Richard, I’m from up north. Have you been to the beaches in north west Scotland e.g. Arisaig beach? Apologies for the side-track but that was a great memory for me, as I managed to persuade my adult kids to go with me. I value little things like that more now.
I shall get the catheter angio done. I was given an appointment back in 2019 but chickened out, more fool me. And after it’s done, I’ll take the kids to the islands for a longer break.
Best regards, FeeFo.

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I’ve not made it further west than Fort William. I follow a guy on Twitter who did a cycling tour of the Highlands and Islands last summer and it was very enticing! I think he managed to bring some unseasonably dry weather with him as well last summer.

I’ve been to Cairngorm mountain for skiing (winter 2020) and to the central belt and Ayr a few years ago. I definitely need to head your way much more often than I have: it’s a fantastic coast. One of my favourite places on the central tour was Culzean Castle. That’s quite a coastline.

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My other favourite outing is the steam railway at Bo’ness - took the kids there when they were younger but got a lodge for my birthday last year at Linlithgow. I hadn’t realised just how many beautiful buildings the town had, friendly locals too. I’m a staycation kind of person, what with covid and the aneurysm but Greece looks good too as they say they take unvaccinated.

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There’s a lot to love about Scotland.

If you’re not vaccinated, I think you can also travel to Norway (very similar in many ways) and I think Scots should get on ok with the language, too. A bairn is a “barn” for example!

I’m off to see my over-80s Dad in Norway in a couple of weeks. I’ve not seen him since 2018 because he had an abdominal aortal aneurysm go pop in 2019 and unsurprisingly he wasn’t well enough to visit, then we’ve had the coronavirus restrictions but now the restrictions are lifted and both Dad and his Mrs are well enough to be visited. What I noticed today, checking through the entry retrictions is that basically there aren’t any, so if you’re not vaccinated, Norway is back open to you. Svalbard is still restricted, I think, but mainland no restrictions.

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Hey FeeFo,

Ohh, not a good label to have. I too have been given that label, but it wasn’t so much that I was non-compliant but rather that I questioned everything. My first surgery was an emergency situation, it sort of all happened around me, but it didn’t exactly go according to plan and within 3 months I was back having further neurosurgery. This one I was more prepared for and I had questions galore. Nothing happened without me asking ‘WHY?’ ‘What for?’. I was non conforming for sure, I’d already been here once, that wasn’t pleasant, so to be doing it all again??? I was not happy and questioned everything. The medicos didn’t like that and gave me the ‘Non-compliant’ label.

I’ve now required a total of 6 neurosurgeries and even 20+yrs later that label still follows me. As one nursey said to me upon looking at my file “Ohh, you have a history…” with that unmistakable tone. “Damn right I have a history, I’ve played your games before…” I must admit, I’m not a nice patient, but it’s been my experiences in navigating it all that has driven me to this point. Some medicos work on a ‘Need-to-know’ basis and you, as the patient, doesn’t need to know. WRONG. Me? I need to know. If they give me the information, it can help me processes it all (somewhat) prior to surgery. Keeping me in the dark raises my stresses to OMG level, then on surgery day I’m an unmitigated mess, it’s nasty for everybody (or so the wife tells me :wink: )

P.S. It was actually the wife who told me directly, “You are not a nice patient” Tsk.

Merl from the Modsupport Team

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@FeeFo
Thank you, I’m doing pretty well. Only a little bit more tired than before it all happened. But that’s a cheap price to pay for something like this. I managed to fly overseas, to Sweden to attend a wedding event in my family. I was a bit anxious about flying, but my physician had told me that I can do it, nothing will happen in my brain. I’m actually there as we speak and I try to balance resting and activities.

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@FeeFo thanks for the definition, we have them as well but it wasn’t clicking in my brain, happens sometimes.

I totally agree with @DickD on the bleed, I had quite a severe bleed but when I asked how much the >1mm of blood meant in volume, they didn’t know. Everyone’s brain is different and the math quite complicated being near impossible is what I was told due to the variances in the hills and dales in individual brains. I had contacted a mathematician who works in the Neuro Dept at Emory.

I’m really happy to read you’ve decided to have the angiogram, I’m sure your children are as well!

Non-compliance is a tricky word. Maybe the medical field needs to list the reason(s) the patient was or is non compliant. Realizing it is often documented, sometimes due to any potential law suit, it is a label that sticks with one forever. Once we have that label, we can get brushed off with other medical issues. Having someone in the medical field write an incorrect reason for a medication is impossible to correct and also follows the patient. For me, I would have wanted someone to document the reason for non compliance. Maybe your mum was of an age that she didn’t want to undergo any more surgeries or procedures. It happened with mine when the hospital FUBARed her cardio procedures (my opinion, not a Doctor). They wanted to do some other things - dialysis, and go back in. She said no. The Residents argued, cajoled, etc save for one or two. Mom asked why they were bugging her and I said they needed to CYA, which the two acknowledge by shaking their heads affirmatively. I had to point out we have a Federal Law here in the States that allows a patient to refuse part or any medical treatment. They weren’t happy, but Mom got what she wanted. I think this is a fantastic article on non compliance - https://well.blogs.nytimes.com/2012/11/15/when-the-patient-is-noncompliant

Thanks for talking about Scotland, etc…we have a bucket list of places we want to visit and the descriptions make me want to go even more!

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I had planned to travel once I’d paid off my mortgage. Did that just before Covid! Norway sounds great - I like watching Scandinavian films on Netflix without dubbing and sometimes without subtitles It’s amazing how many words are similar. I hope you have a great time seeing your family - 4 years is a long time without seeing close ones.

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Hi again oct20, I hope you’re having a great time in Sweden. I’d be exactly the same about flying, even with the unruptured one. Sending you good vibes!

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I really cannot understand why medics don’t like being asked questions. I mean something as important as an aneurysm or AVM, something that can cause devastation to the patient and the family, cannot be brushed off without the patient being fully aware of what’s going on. My mum had said - ‘what will the angio show, that I need brain surgery? Even in that event, I don’t want surgery so there’s no point in the angio’. Our mums seem like strong women and we are also.

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Hi again Merl, You need to be tough to survive brain surgery. Why can’t they understand that? Six surgeries sounds scary. I’ve been told I can be a bit ‘nasty’ but it’s being assertive.
Im feeling a bit battered because my GP sent me to A+E again yesterday. My word finding wasn’t good + my chest felt tight. I didn’t want to go but as the dr from the 1st visit talked about ‘possible catastophic bleed’, I was persuaded to get things checked.
Whole different scenario yesterday at A+E when I was made to feel like a hypochondriac especially when I told them I had bought a Kardia mobile. ‘Don’t buy all these devices’, she said. '‘Let me stop you right there, as an adult I shall buy what I want, anyway it’s one device and my GP sent me here I didn’t ask to be sent here’.
‘It’s a teeny aneurysm’, she replied with a snigger. Ok, why did the previous dr scare me with ‘possible catastophic bleed’, I thought. Then, as I’m leaving, she says - we can do a lumbar puncture if you want one. You’re the dr, not me! One minute she’s laughing saying it’s a tiny lesion and then talks about a lumbar puncture, literally as I’m out the door. Covering her own blooming back. I left an online review…just hope it doesn’t get rejected by the online polis (Scots slang for police).

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I had a lumbar puncture once, and once was more than enough. Hurt like the dickens. It’s used as an indicator for bleeding as the blood goes into the CSF. The ED MD thought the CT scan was incorrect. Apparently when he sent the results to my Neurosurgeon, they were questioning the way he did the test. I laughingly told them I’m not the one to ask, never had it done before and won’t do it again, hurts like the dickens and made my headache worse. But despite me never wanting another, I’ve been told I will if that’s what a Dr wants.:crazy_face:.

I hate to hear you’ve been brushed off. Is no one wanting to do an angiogram then?

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Well, they say only the good die young, so I’ll be around till I’m 100 :laughing:

And I agree, it is being assertive and it’s been my experiences prior to actually being diagnosed, then the journey since that’s driven me to this point of assertiveness. When they talk about things like a catastrophic bleed it does make us hypervigilant, well it did me. Even a teeny annie can bleed.

I too have been to A&E only for it all to be minimised, but the way you manage, the way I manage, if that’s what works for us, then that’s what you use and I trial all of those long before going anywhere near a hospital. Having medicos 2nd guessing my reporting I find infuriating. I don’t go to A&E because I like the place, something VERY out of the ordinary has occurred for me to turn up there, so making out it’s hypochondria… GGRRRrrrrrrr It lights my (already short) fuse every time and I’m ready to explode.

Nobody knows your symptoms, nobody knows the level of your pain (as much as they may make out they know all about it) and if something is amiss you’ve got to speak up.

Merl from the Modsupport Team

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