Hello, I am from the USA. I mention that because it seems that many of you may be from the U.K. or elsewhere.
I am trying to understand all this talk about leaving
unruptured aneurysms alone. I have never heard of this practice before when it comes to Brain aneurysms.
When mine was discovered (2. something, Circle of Willis) they coiled in within a month. Everyone I know or have encountered in the US has never been put off unless there was no hope to save them.
I am trying to gain understanding of this practice.
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I’m from the US (NYC) and my neurologist told me that we would just watch the 4mm aneurysm, as after I left the ER I no longer had the extreme headache. He diagnosed me as having had a migraine and that the aneurysm was probably an incidental finding found in the CT (with and without contrast). He wanted me to get an MRI but when I told him I was so claustrophobic I couldn’t get in the machine, he wasn’t worried about it. Obviously. I don’t want to have brain surgery if I don’t have to, although I’m not entirely comfortable knowing that there is something in my head that shouldn’t be there. I’m still trying o figure the whole thing out.
Hi i am also form the US. I had an unruptured aneurysm found after a horrible headache behind my eye. It was 5.5 and on my anterior communicating artery. My doctor was not convinced the headache was related to the aneurysm but I have never experienced one after the coiling and absolutely believe it was a warning headache. In the US there is a campaign telling people of these headaches and while I understand that doctors don’t want everyone with a migraine thinking they have an aneurysm- I believe the headache saved my life (and the doctor who believed me). It was only a month between my surgery and my headache but I can’t fathom having to live normally knowing that it had not been taken care of. I’m sorry for your stress. I would definitely find a second opinion. I’m in Detroit if you need an amazing neurosurgeon❤️.
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If your doctor wasn’t convinced that the headache was related to your aneurysm, what made him decide you needed coiling? Think your doc has rec for someone in NYC?
Thank you so much for your replies. My coiling was done in GA.
I could not imagine waiting around with one in my head.
I currently have 2 in my abdominal aorta (4.5 & 2.3) that I can’t wait to get rid of.
I wish you all the very best and pray for you to have awesome recoveries!
I flew from the east coast to the west coast after a coiling and everything was fine. I had gotten clearance from my neurologist anyway. Five years after arriving on the west coast, my second one grew significantly and I ended up having a craniotomy. That was a year ago. My neurologist tells me I can go wherever. I just have to make sure that I don’t leave my Plavix!
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There are a few members here asking about flight travel, so here’s what I’ve been told by the neuro and my own experiences with the travel itself.
I was advised that flying ‘may’ not be safe. This is due to the air pressure fluctuations. For some neuro patients symptoms can vary vastly with the moderate pressure changes at ground level. They/we notice changes with weather patterns. On a stormy day when the air pressure increases the headaches/eye pain/nausea can be huge and similarly with low pressure. With flying in a pressurized plane these fluctuations can be greater and even less stable than natural air pressures.
I was in need of doing a long haul flight from Australia to the UK, which was a major concern under the circumstances. So to test out if there was an issue I did a shorter internal flight. The take-off was OK, I felt some head pressure, but was OK. During the flight we had a bit of turbulence. I did have some further issues with head pressure but semi OK. Then we came into land. OHH BOY, not good, as we descended the pressure increased, increased and INCREASED some more. It felt as if my eyes were going to pop from my skull. When we landed the headache decreased but was still present for a couple of hours afterwards. Luckily we had arranged for someone to pick us up from the airport because there was no way I would have been able to drive safely.
So then came the long haul flight, and I must admit, I was fearful. I thought if a shorter flight had such symptoms then a long haul would have been absolute agony. But this was not the case. We flew from Australia to the middle east for the first leg, then from the middle east to the UK and although I did notice the pressure upon landing, the symptoms were minimal, thankfully.
Whilst my wife and I were in the UK we decided to travel to mainland Europe, another short flight, and sure enough UK to Amsterdam and I was in agony. We travelled around Europe by train and all was fine, but again flying from France back to the UK and I was very ill. Upon returning to Australia, another long haul, and I seemed OK.
My only thoughts here was that with the long haul flights, my body/brain had time to adjust to the changes in pressure. Where as with the shorter distance flights there was very little adjustment time and the fluctuations had a greater impact.
So, that’s my personal experience with neurosurgery and flying.
Merl from the Moderator Support Team
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They found my aneurysm the same way, and I used the watch and wait method from 1999 to 2014. It was 4-5, and lots of MRI-A scans didn’t see it. I had my angiogram report - otherwise doctors treated me like I had Munchausen’s. Finally, with the Pipeline, I had it repaired at Johns Hopkins. The simple fact is that neurosurgeons and neurologists are still learning about aneurysms. They will often be honest about that. “We don’t usually know you have one until it ruptures and kills you.” Aneurysm rupture rate goes up dramatically at the age of 60.
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Hey Mary,
“…doctors treated me like I had Munchausen’s…” And I have to say this is very common. I was told for many years “There’s nothing wrong, it’s all in your head…” Well, that was until they did find something and, guess what, they were right, it was all in my head. But it wasn’t factitious, it was real. Admittedly back then they didn’t have MRI scans and CT scans were a fairly new thing. My symptoms were varied and, in hindsight, non specific. So the simplest answer was “He’s crazy in da coconut”, Putting the onus back on the patient.
You state “The simple fact is that neurosurgeons and neurologists are still learning about aneurysms”. But I’d like to take that one step further and say ‘neurosurgeons and neurologists are still learning about the brain.’ Many years ago the thinking was that certain areas of the brain control certain parts of the body. They now know this to be false as differing regions of the brain all interact with each other and they do not work in isolation as formally believed. So moving on from that if an annie is altering the blood to a particular region of the brain, it only follows that function of that brain region and the messages being sent from that region would also be altered.
You also state “They will often be honest about that.” If you have found this to be true I would have to say you have been fortunate. I, on the other hand, have not found this to be the case, especially with specialists. I have often found the attitude of “I’m the specialist, so I KNOW…” to be much more prevalent. Some pcp’s are far more likely to accept that their knowledge is not completely holistic, but to have a specialist acknowledge this, ohh, now that’s a rare thing IMO.
Merl from the Moderator Support Team
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When they found the aneurysm, the neurologist called me himself at my work phone. He said I needed to go to a neurosurgeon immediately because, nobody knew much about aneurysms, and they usually only find out someone had one because it killed them. He said that he didn’t know if there was a decent treatment for mine. He was scared for me. Then I went to two neurosurgeons. The first surgeon said he used to operate on these, but 5% of his patients died on the table, so he quit. He said don’t do anything that causes blood pressure spikes (moving furniture, etc) or sudden pressure changes, like parachuting or sea diving. I asked if sex would kill me, he said that these things rupture during people’s sleep. I asked him if I could continue to exercise and explained my workout regimen and he said, well, you’ve been doing it so far, so if you promise to monitor your blood pressure, okay. I took my blood pressure constantly at first.
Then I went to a surgeon who wanted to use me to learn how to do the Guglielmi Coil. He and his team thought I was a good candidate. When we met in his office, he told me all the same things the neurologist and the conservative neurosurgeon had said. He acknowledged that the coil was risky. He had me get a cerebral angiogram so that they could get a better look at the aneurysm and so they could look around to see if I had any others. Nope, just the one. The angiogram was horrible and I hoped I’d never have to get one again.
This was all in 1999 in St. Louis, Missouri. I guess I was mostly lucky. My research showed me that the coil was still being learned in the U.S. and that the risks of death or being seriously brain damaged were too great. That’s why I waited. I had to have multiple cerebral angiograms at Johns Hopkins, but they didn’t almost kill me like the one in St. Louis.
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