Advice needed please

Hello everyone

Im new here. In August last year my husband had an MRI scan as he was experiencing daily headaches. The scan showed a 4.5mm aneurysm which was rather a shock for us both! The consultant said the headaches are not linked to the aneurysm. He has stated that there is 6% chance of it rupturing in my husbands lifetime (hes 74yrs old) or 5% risk of the coiling procedure going wrong if he decides to go ahead with it. The risks are moreorless even and we can’t decide what to do. Hubby has had lots of health issues and operations so is reluctant to have anymore procedures done.
He has decided to be monitored and have a yearly scan (next one due in Aug).
What would you do in hubbys situation? Im always thinking and worrying about it. Its affecting my mental health. I dont want to book a holiday as Im scared something will happen while we are away. Its like a dark cloud following me around! Any advice would be much appreciated. Thank you.
Elaine.

Good Morning Elaine and thank you so much for your first post!

If I was in your husband’s position with his age, health and operations already behind me, I would most likely do what he is doing. I say this having experienced a rupture and I know it sounds odd coming from me. Many members will have a different viewpoint I am sure.

Age does play an important role in any type of surgery. There are many risks as you know on any type of procedure, starting with the anesthesia. I was joked with my Neurosurgeon that I was not going to have any more procedures done by her when I turn 80. She assured me I wouldn’t have any when I reached 80. The older we get, the risks do increase. My last procedure, I went into severe anaphylaxis so I won’t get anymore procedures with dye unless it’s to save my life. I’m good with that, ecstatic in fact, as I have had many angiograms since I ruptured.

If the Consultant is good with just watching his aneurysm, I imagine the consultant thinks it’s in a place that has a lower risk of rupture and the aneurysm is smooth walled. Did your husband have an angiogram or did he just have a CT or MRI/A? Angiograms are the “gold standard” by everything I have read. They allow the doctor to actually see the full picture of the aneurysm. I wonder if the consultant is suing percentages from their personal experience or knowledge gained from reading the research papers. My neurosurgeon uses her own experience for the most part, sometimes coupled with the others neurosurgeons at the hospital where she works. This helps me more as I know the statistics are sound.

An angiogram has the same basic set of risks as being coiled just without the doctor putting the coils into the little bugger. When I started with my second coiling attempt, there were three angiograms for one fix. The angiogram prior to look and see what’s going on, the one with the coils, and then the follow up to see how it was fairing. To date, I have had four repairs, so 12 or 13 total count of angiograms. My surgeon has done a couple with out adding coils.

I hope other members reply to your post as they are a wonderful group of folks.
Have you shared your feelings with your husband? Communication both ways are very important when living with an aneurysm. Although I imagine BH would insist I get it repaired, I would be inclined to say “bump it” I want to live my life, play with the dogs, play on the little tractor and enjoy a holiday or two.

Hello, Elaine! It’s great that you’ve joined BAFsupport. I hope we can tell you some things that help you feel more settled. I have to say discovering something like this is very disturbing and we all know how you feel!

I think it’s fair to say that your husband’s view seems very sensible and it is very difficult to see why choosing one similar risk over the other would make sense. I guess what you’re doing by watching-and-waiting is for the ‘leave it alone’ risk to grow somewhat higher, then it clearly makes sense to choose surgery.

I have something called an AVM in the back of my brain. It is different from an aneurysm but it presents much the same risks as an aneurysm: i.e. that it might rupture. When I was in a similar circumstance as your husband, I took exactly the same approach: when the numbers start to change the ‘wrong’ way round, then I’ll be comfortable to act. As it happened, my AVM felt like it was developing rather quickly, so it didn’t take very long for me to be convinced that action was needed. However, there’s no reason to suppose that your husband’s aneurysm will change anything like my different condition did.

What is probably more important is for you to work through in your mind about your husband’s situation: we could do with helping you to position your life and his life in your mind in a positive way because this is perhaps affecting you more than it is him. The one thought I’ve got in this direction is to just highlight (in case it helps) that your own risk of popping off or having something untoward happening may not be 6% but it could be 4% or 3% – or it might even be higher, 10%! – the point is you don’t know. The only reason you have an estimate of risk for your husband is because someone has looked and found something on a scan. None of us – even ‘healthy’ people – have a zero risk of popping off. So when you hear a number like 6%, don’t think of that as suddenly having a problem where there was no problem ever before. It could be that by the time you get to your seventies, everyone has about a 3% or 4% risk: what I’m trying to say is that the baseline isn’t zero.

I often remind myself that there are million things that we do in life that carry risk: we drive in a car, we cross the road, we carry the tea tray up and downstairs. All of these things carry risk with them but we understand them, we rationalise them and we take sensible steps to mitigate them, like looking both ways or walking carefully down the stairs etc. What it doesn’t do is stop us from doing the things in life that we want to do.

So try to rationalize this changed risk in these contexts and see if that helps you to understand it, accept it, put it out of mind. It is much more helpful if we can lure you into accepting it or at least putting it out of mind.

Hope something here might help,

Richard

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Personally, I feel that 74 is still quite young in this day and age. If you have not an already, I would seek a second and third opinion from neurosurgeons outside of the group you went to and then decide.You can also send your info to places like Barrows and Mayo Clinic for consult. It may help you feel at ease if you choose the watch and wait approach if others agree. Best of luck.

It is. But when I was justifying to myself (I’m in my fifties) I was guiding my thoughts by the same principles: that there is an underlying risk of popping off, even in one’s fifties, so I shouldn’t be comparing any risk score I got with zero.

Elaine and her hubby are in the UK, so approaching second opinions etc will be a little different (and it sounds like hubby has made his mind up, so it is how we can help Elaine to reconcile to the rather frightening new world that they have found themselves in that I think we need to help with).

Lots of love all,

Richard

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Hi everyone

Thank you all so much for the advice. Moultroub asked if hubby had an angiogram. The answer is no not for his anuerysm, he just had an MRI. Although hubby has had an angiogram in the past for another health issue.

Must admit it is me struggling more than hubby with this new diagnosis. However, the advice given here makes sense and I feel a little easier. Although Ive always been a born worrier so I think I may still struggle! Hubby has made the decision to monitor the situation so I guess we will wait and see what the next MRI scan shows this August.

Thank you all again.
Elaine.

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Since your husband has his mind made up, I think monitoring sounds reasonable-especially since August will be here before you know it. Then you can assess the situation at that time and decide if an angiogram is necessary and whether or not you want to pursue another opinion. While I was in the wait-and-see approach before my stent placement, I felt better knowing that my family was aware of my situation and knew what to do in the event of an emergency.Then we went about life as normally as possible. Best of luck and keep us posted.

Yes you are correct, Richard, Elaine needs support; however, I was answering the question that she asked and that was “what would YOU do in hubby’s situation?”- that’s exactly what I did when I was in his situation. I’m not aware of how things are done in the UK, however at least a second opinion is usually warranted before any procedure. And I thought if there was some agreement to the wait and see approach, perhaps she would feel better. Either way, I see now that he has decided to wait and they can take it from there.

Elaine, I think all of us in a relationship are in the same boat as you, one leans more towards being the worrier than the other. BH is the worrier and I can name every friend who is the worrier in their partnership. :joy:.

I imagine it must be very difficult to be the worrier as y’all tend to look more at all the “what if’s” whilst the non- worrier tends to say something like “well okay then. There it is” as we happily go on. BH often tells me I’m ignoring things, so I always have to say that this is not so. I just can’t control it in my mind. We do tell each other when it’s our time to go, nothing will stop that train ride.

I truly believe that his Consultant isn’t brushing him off, just their knowledge in the location, type and rate of rupture is coming into play. As @DickD mentions, we just don’t know what with all the different percentages that come into play.

What you can do is educate yourself and your husband on the signs of what is called a “thunderclap” headache. If he has a sudden onset of an agonizing pain call 999 (in the States we call 911) and ask for an ambulance straight away. Hopefully the Consultant has already attended to this, if not there is a plethora of sites on the internet.

And I cannot stress this enough, come back and talk to us any time you need to. We are here for you on both sides of the pond, and throughout our world wide membership!

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Hi Moultroub

Yes I know about the thunderclap headaches. My doctor mentioned it so I am aware of the symptoms.

Can I ask everyone…do you suffer from daily headaches? My husband has them daily hence the investigations and MRI and thus finding the anuerysm. Throughout our married life, (which is 39yrs,) hes always been a headachy person. Is this related to his aneurysm? The consultant and doctor said its not but I think it could be!

Thank you all once again for your advice. I appreciate your replies.

Elaine.

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Hey Elaine,

Yes, some days they can be mild, some days OMG

Me too, but I don’t just get them… …I give them to others TOO!!! :laughing: :wink: (my poor wife)

Me Too!!! I’ve had headaches since I was a kid, but it was never aligned. It wasn’t until 20yrs later that any correlation was identified and even then, it was with great reluctance. Lots of “…It could be ‘X’ or it could by ‘Y’…”

Merl from the Modsupport Team

Elaine,

I think it’s fair to say that the doctors always tell people that their headaches and the blood vessel anomaly are not related but there are so many people here and in our AVM community for whom there appears to be a correlation, that there must be a correlation.

I guess if the aneurysm is pressing on something, it will have an effect. However, if your hubby elected to have an operation, the docs would never vouch to aim to remove a headache. The purpose of the operation would be only to reduce the stroke risk. Why? Two reasons I can think of: 1. Most approaches to an aneurysm won’t remove the bulge of the aneurysm itself: the bulge may be clipped off (isolated) but stay in situ or it may be embolised or bypassed and in each case it stays in place but the risk of rupture is reduced. 2. The brain is such a pernickety thing that the tiniest disturbance can cause irritation, headaches or seizures. There’s no way that a doctor would operate and hope to remove any irritation.

So I’d say that the only purpose of an op would be to address the stroke risk, not to do with any headaches. From time to time, people will say that their headaches have gone away post op but there’s a better chance of complications, such as seizures or headaches being gained not lost.

Hope this helps in its own (slightly disappointing) way,

Richard

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Not for me prior to rupture, just occasional headaches that were justified by lack of sleep, improper hydration, crazy working hours, allergies…

Thank you all again. I appreciate your advice and support.
Elaine :slightly_smiling_face:

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Hiya, I don’t wan t to minimize the seriousness of what you are feeling, please don’t think that is what I’m doing.

I have a 4mm unruptured in my left aortic, and I had a ruptured on march of 2022. My amazing surgeon put it this way… We fixed the one that would kill you, but the other is so small, we’re just going to watch it. 6 month scan was perfect (stent was fine coil was fine, no growth on the unruptured), so he told me to live my life without worry. I have a greater chance of being hit by a car… So does your husband (then i looked up the statistics - 12% in 2022). Don’t wait. Live your life. Plan vacations, and take them.

Next month I’m flying to LA with my daughter (minus our husbands) and going on roller coasters. Being afraid of what might be, is no way to spend whatever time ANY of us have left.

Start small if it makes you feel better. :slight_smile: But go, and have wonderful memories. And share them with us :slight_smile:

xoxo
Julie

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Hi Julie

Thank you for your message. I understand what you’re saying but this damn aneurysm is impacting our lives.
Today ive been trying to book a holiday (in the UK) but i cant find anything with cancellation insurance! I could book without it but if we had to cancel because of hubbys aneurysm then we’d lose the full cost of the holiday which I really cant afford to lose!

I have found another support group here in the UK. I rang them today and they are arranging for me to talk to a counsellor. I think i need help getting my head around all this. Its come as a huge shock and I’m not coping that well. Looks like any memories we make will be at home!

Elaine xxx

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Hi Elaine,
I was struck by something you mentioned. I had never been a headache person. I was diagnosed with a basilar tip aneurysm thru MRI after experiencing weird head zaps, zings and gripping pressures that I knew weren’t normal. They told me the headaches weren’t related to the aneurysm, but after my web device placement, those pains disappeared. My Neuro NP seemed surprised by that. I went on to also get coiled and stent placed to rein it in a little more. Thankfully nothing has changed with last MRA, and hoping for the best. My head had to adjust to the new hardware, and I still get occasional brief pressures, but nothing like I had before. I’m thankful this was caught, but I absolutely would not have known without those new head pains. There’s a lot the docs don’t know, but until you’ve experienced it, you don’t understand. Watching it is good, but if the head pains persist, let your hub know they could go away after a procedure. Mine did. And like others said, he’s not that old. Best of luck to you both!

Hi Jeanne

Thank you for your reply. I havn’t heard of a web device placement? Can you explain please?. Hubby was just offered the coiling. He is still having daily headaches but he says they dont feel any different to his usual headache. He’s suffered with headaches and migraines all our married life (39yrs).

His aneurysm is a basular one (its at the base of his brain). I believe these have more chance of rupturing so Ive read but I maybe wrong.

I noticed other members of this forum who had coiling or other procedures done, that they suffered from headaches afterwards but not before? I guess we are all different and it will affect people in other ways.

I’m not sure how slow or fast the aneurysm grows? Hubby will have to see if there are any changes when he has his next MRI in August.

Take care of yourself and thank you for your message.

Elaine.

I could imagine how hard your situation. But thanks God you are here, so many good people here which share what they are going through so you are not feeling alone, it is not just you are in other side, but you are frustrated being in the middle situation

Probably it is a good thing to find out from the second opinion and also review the type of aneurysm and change of being ruptured.

I was in the similar situation, my aneurysm was I’m not good location but it was bigger, I think three times than your husband’s aneurysm

It was hard for everyone especially my surgeon
The procedure was too risky. If they were not do nothing, the aneurysm is pushing my brainstem
So I would die as well

Seeing my ages, 54, they decided to move forward
Now my turn to take sooner or later because I was in the middle situation with my things
Finally I counted blood clot closing my blood flow and the type of my aneurysm (fusiform), I still had a chance to get surgery 10 days later

The coiling procedure was successfully but hours later the aneurysm hit my brainstem, I have my eyes only open.

Now 5 years later, I am still recovering, I could eat, talk, I could describe for being thankful to accept my new life and style.

I still remembered what my surgeon told me
If I am old, probably they will do nothing
Mom has 2 mm aneurysm, she is ok with that , probably she has it more than 6 years (?) or longer than that

Aneurysm needs to be fixed if it will bring a problem
Probably the blood flow affect your husband?
I drew my aneurysm with blood clot and blood flow to see how my position was at that time

Hope it will help you to know something
Remember God watches us

I’d say if he is healthy and still enjoying life to have it coiled if possible. Just my two cents. Good luck