So, to be brief. Finally seen the Consultant, but only after I made a bit of fuss! As soon as I got to the hospital was told they had been trying to phone me all morning, which was a lie. Also told he had had to attend emergency surgery. To cut a long story short, I had asked to speak to his secretary because we all know if you phone, it's an answer machine you get.
Lo and behold, I was taken in to the Consultant. Spent about five minutes there, going through the scans. The aneurysm is 5.7 mm, and I have numerous white dots. All mini strokes. Now, I knew before I went that in people over 60, it's usually conservative treatment only. But not once did he ask about my symptoms, and when I brought up the subject, he just ignored it! So, here I sit, with a range of unpleasant symptoms,and have no idea if they will progress and cause further problems. Anyone else had this?Any advice welcome.
Thank you.
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oldbessie
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I am not a doctor but I wonder whether, given that you have evidence of TIAs, and what is classed as a 'small' i.e.low risk aneurysm, they would be playing it cautiously anyway? The last thing they need to do is start going in there mucking about with your vascular system and setting things off that could really cause you dificulties...
Perhaps the best outcome for you would be for someone in a different field (a vascular or stroke specialist maybe?) to take a look. Can they support you with mediication to reduce the likelihood of the mini-strokes, for example. I know a lady on meds for that.
Sometimes half the problem with these specialists is that outside of their own field they seem to have forgotten anything they learned in their junior doctor days.😯
Ta for the reply. I know that over 60, (even in America) they tend not to operate, I accept that. I do not think I could have went through any more ops just now anyway. The problem for me is that with both him and my G.P's they seem reluctant to let me talk about some symptoms I have.
(Having already suspected I had had a stroke anyway, with some quite obvious symptoms, including drooping eye weakness to left side of my body) I had to visit the Doc four times over a long period, before they sent me for a scan---all this even after physio pointed out muscle wastage in my leg and so forth.
I just have to assume now that the symptoms I have are coming from the stroke and or aneurysm. I would have liked to have asked things like will those symptoms worsen as the aneurysm grows? And under what circumstances should I be concerned enough to bother the G.P again? I know from the computer of course if I get a severe headache to seek help, but no Doc or Specialist has told me this, or given any advice at all.
Thanks again.xx
Morning I totally know your about your frustration. I don't think I've met a neurologist that has any ability to listen. What they're missing is a massive factor is that listening to the person they can find out so much more. I was lucky if they looked up from their paperwork. If you don't fit in a nice neat box then they don't want to know. I think they forget and need reminding we are people trying to cope with so much, not just a body....
Thanks for your reply. But all I would like to know for sure is are all the symptoms I have are related to the stroke/aneurysm. Would they worse as the it grows? Etc. Neither Doc nor specialist have given any advice at all. I only know from the computer that I need to seek help if a sudden headache develops. Surely to goodness, that should be standard advice? You are right though. I have three neuro surgeons now, 2 for my spine, and again felt ignored!
Hi yes I agree totally my neurologist said I had a concussion that would have lasted only a month, he refused to look at the standing MRI images that showed I had a brain traumaincluding brain herniation plus other abnormlities. In fact I had severe headaches, balance and vision problems, cognitive and memory problems etc which led yo the loss of my job and my home. Four years down the line and I'm still not outof the woods yet and unable to hold a job down. He has made me homeless god bless him!
To me it sounds like the consultant agreed to see you at short notice (No fault of your if everything got turned on it's head by the emergency) and they possibly didn't have or devote enough time to acquainting themslves with your notes or you. I would get in touch with their secretary again and ask for another appointment, and when you attend, start the conversation by making it clear that you have questions, and if they're unable to answer them, who do they know that can? You should have their attention for the duration of that appointment, don't let them rush you.
I do think medical professionals can have a "Don't ask, don't tell" approach sometimes, which isn't great for the lay person. How are you meant to ask a question about something you don't know about?
Hope you dont mind but i was 'listening in' to the conversation going on with Bessie (and that appalling treatment).
Just wanted to say you hit the nail on the head with your statement:
'' How are you meant to ask a question about something you don't know about''
Its been something that has shocked me over the years - it is the trained professional who is supposed to inform you of all the things relevant.
I plodded on thinking 'well, he would have said something surely, if there was anything else i needed to know'.
Bessie, i really hope you get the conversation you need with a consultant - you shouldnt have to rely on the internet.
Sometimes people are either too unwell or just too tired to fight their own corner and just have to accept the situation - i think the advice you have been given here on the forum is spot on - i hope you succeed.
Thank you for replying. Like most people, I mentally go in with a list of questions, and I did refer to my symptoms, but he just ignored me! As I say, I have accepted certain things, but as you say, it's from the internet that I know to seek help if a sudden headache develops.
Surely that basic bot if info should have been relayed to me!
And I just have to assume that all the symptoms I have, from hand tremors to poor memory,to left sided weakness are all down to the stroke/ aneurysm.x
I am guessing its the same no matter what the problem - i wasnt given much info about my head injury. I think its a delicate balance of telling the person what they need to know, but not unnecessarily worrying them either.
I doubt any of its done deliberately, but that doesnt help the patient.
I wish we had the good old days of the family doctor who knew the person. Everybody is too busy now.
Thanks for your kind words.Yes, I agree we need the old family Doctors, they did at least care. And I hate it when a Doc tells you not to worry! That makes you worry all the more!
Hi, thanks for the reply. My appointment had been made sometime in advance. As for seeing me in a hurry, I do not think that was the case.The receptionist said they had been phoning all morning, which was untrue. My appointment was at 2.30. As i actually got to see him, I can only assume he had carried out op in the morning, and had already come back,and just decided he couldn't be bothered with his clinic. As I assume he had already studied the scans prior to the appointment he must have been a little familiar with them anyway.
Sadly, I have seen enough consultants over the past few years ,and can separate the good ones from the bad. And, you know, it was a nurse practitioner who was trying to say he wasn't there--could she not have given me the results if he didn't want to?
Anyway, 'nuff of my ranting. Again, it's living in ignorance I can't stand.
Long story short. I had an appointment that day, it was only after we turned up that we were told initially he couldn't see me, only after I sighed and said, oh no,that's three times in a row I've had appointments cancelled, that all of a sudden, he said he could seem me. As to making a further appointment, I have to rely so much on other people to get me to these appointments, (This hospital is a nightmare to get too. I always think if he can't give you the results personally, surely there is a nurse practitioner around who could do so?
Hi oldbessie, like you I have an aneurysm, the thought of it is quite frightening, especially as they haven't given you any advise. Mine was found when I was 55, and there was never any mention of a cutoff because of age, I was told to get to a hospital, if you have a headache like an almighty slap on the back of my head, for someone who had daily headaches I just thought how would I know but believe me you would know the difference. I was told they had left small ones and they burst and big ones that didn't there is no knowing, but you have to put your trust in the neuro team, if they want to leave it then there is a reason, maybe it could be more detrimental to you, to operate. I was told aneurysms don't cause symptoms, you mentioned spine, could that be the cause of your weakened side. Do you take anyone with you to appointments, I don't always take in what is being said, my sister comes with me, and we write questions down so we don't forget, I hope you get the answers you need, just don't give up xx
Thanks for your reply. All my research suggests that over the age of 60, it's conservative enactment only.Only in extreme circumstances will they operate. I accept this, as I do not think I could go through an op anyway.
Some aneurysms do cause symptoms, in my case it caused a stroke. Another myth about them is that all bleeds are ear fatal. You can have a little bleed, then the aneurysm seals itself. That much I know from research.I had a stroke, but had to visit Doc several times before the decided on a scan/. Even after physio noticed muscle wastage in my leg and suggested I had had a stroke.The scans showed up the aneurysm and a lot of small white dots on the brain.
At least your specialist advised about the headaches--neither my own Doc or he said anything like that to me!
Hi Bessie. I like you have had various unanswered questions and frustrating appointments with consultants and I would recommend putting your questions in writing. Verbal meetings they don't feel obliged to respond to, but have found written requests can't be ignored so easily. Perhaps it may focus their response or it may be that they can't answer because there are too many eventualities to surmise about. I am happy to say I have now got an amazing consultant who answers very thoroughly all my queries. I really hope you get your answers soon too. It's a big worry without feeling like your understood.
Thanks for the reply. yes, if I had thought, I'd have put some questions in writing.But really, I go back to the days of the old family doctor,and you never had this. everyting was talked about and open.
It sounds to me like the hospital messed it up and didn't tell the consultant about your appointment, or the consultant himself wanted the time free, so they made up a story about phoning you to cancel. Then when you did get to see him, he wasn't prepared (they usually aren't anyway in my experience - they glance at your notes for the first time when you go in, and then only glance at them), and he rushed you out of there as soon as possible.
I agree with the others - if you want more information and some answers, you should ask your GP for another appointment. As a tip, don't just mentally prepare questions - you're bound to forget some - write them down and don't be afraid to take out your list and go through them when you're there. Unfortunately, medicine is not at the stage where they can all be answered, but at least you'll have some more knowledge and know more about how to deal with things in future.
Hi, thanks for the reply. As I say, they told me and others they had been trying to phone us all morning, which they hadn't done. It could be indeed he had carried out a surgery earlier, and decided he just didn't want to do his clinic. If I had not asked to see the secretary, I would have just went home. It was galling to know he was sitting in the back anyway.
But yes, I'll go and see a doctor soon, to try and get some answers.
You are right that the aneurysm could have bled, caused a stroke or stroke like symptoms then resealed itself - that is one hypothesis for what happened to me 7 years ago just before my 40th birthday. But beyond that my annie is described as 'asymptomatic' and the headaches, vertigo, leg weakness and many other symptoms were put down to ME (perhaps because the annie wasn't discovered -or rather was missed - until 3 years in).
I was told when it was finally discovered that if the annie had indeed ruptured and resealed, or blown out its second lobe then stopped, then they would not now be able to see. Had brain scans been taken at the time of my collapse then possibly...but I thought it was just an unusually severe migraine so went to bed for 4 days instead. So it can only ever be a hypothesis.
It may be that something else non-structural went wrong in my brain that day (hence the FND diagnosis - with ME being relabelled as CFS here in the UK most doctors view my leg dysfunction as being most unusual for ME/CFS. Odd, as Dr Ramsey who originally framed the ME diagnostic criteria recognised it as a key symptom). It is also quite possible that the annie had always been sitting there quietly...we will never know.
Anyway I had treatment for the annie in June last year which was partially successful. The bigger lobe which was 5mm across has now shrunk, so I am only left with the smaller one of 4mm. I still have all my symptoms, in fact worse at the moment than they have been for a while, so I guess they are indeed not connected to the annie.
Annies generally are thought only to cause symptoms because of 'mass effect' i.e. when they get so big that they start putting pressure on the brain cells next to them. Small (under 7mm) annies are uaually not likely to cause mass effect except where they are on arteries in close conjunction with nerves. So for example it is not uncommon for an opthalmic artery annie to cause sight problems because the eye nerves run close and parallel to the artery in places. The part of my annie which had engulfed my opthalmic artery was on the other side so I didn't gt those symptoms fortunately, though had it been 'cured' and not stayed patent I would have gone blind in that eye...still may happen yet!
The white dots you should ask for reassurance about specifically. Perhaps send your consultant an email with just that question. Are they age related? Everyone's brain and spinal chord begins to show white dots as they get older. They are not necessarily connected ith something fatal - have been seen in people with migraine, for example. They are often associated with risk of stroke, but in the sense that they often correlate with other risk factors - high BP, poor vascular health indicators like cholestrol levels, high BMI. Of course it makes sense to get all those things under control if they are an issue,although I for one struggle with maintaining a healthy BMI when I can no longer walk, let alone run!. The white spots are usually thought to be markers that things are not quite as tiptop as they might be, rather than causing symptoms, although some neuros read them as being patches of constricted blood flow linked to mini strokes caused by blood slowing down and backing up, rather than stopping completely because of a blockage.
As to whether you will continue to have symptoms or be at risk of stroke, whilst the annie and white dots aren't necessarily the cause of what is going on at the moment, (especially if your CNS is out of kilter), then I guess they will continue to plague you and yes they could be associated with higher risk...I know now my risk is higher than I thought it was before I knew about the annie,for example. I just didn't know that before. But I have reached the conclusion that there's not an awful lot I can do about that, apart from getting on with life while I still have it!
Thanks for your reply. Firstly, I know my 'Annie' LOL! had a small bleed and resealed, that I do know. I also know it puts me at a higher risk of having the ;big one' but you know, I have heart disease too, and know that i could pop my clogs at any time! I have long accepted this.
It is being kept in ignorance I suppose that annoys me. I have multiple symptoms, and have had for some time time, and am left to assume they are a result of the stroke I had or./ Annie or both.
My concern is that as the aneurysm grows, will those symptoms worsen? The Consultant did not ask one question about them ,and ignored me when I tried to discuss them!
As to the white spots, they are indicative of having had smaller strokes. And although very common in older people, the should not be ignored. In my own case, as I often have bouts of very low blood pressure ,and this can cause tiny strokes. ( Gleaned from my own research)
I think what I'm trying to say is I feel a little let down. like you, I have a number of symptoms that the Docs do not even know about, from a tremor in hand, to the pain I get behind my eye ,every time I get up and move around. But enough of me, I hope you get some resolutions to your problems.
( PS. About your leg weakness-----last year, I had a second spinal surgery-----the Docs had been putting my leg weakness down to previous spinal problems. Had they picked up the stroke then, I may have avoided that)
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