Carotid cavernous aneurysm?

Hi All

First time on here. Admitted to hospital summer last year following a number of seizures. Trigger appeared to be when was in physical pain?! Following a number of scans, lumber puncture, hospital appointments ruled out epilepsy. Received letter 3 wk ago saying case discussed at MDT meeting and found 6mm right sided carotid cavernous aneurysm arising from superior hypophysis artery and given my age (45) may need treatment and suggesting cerebral angiogram. Got first app with neurosurgery tomorrow. Did the thing that shouldn't and have been searching the net, sounds like my aneurysm is in an awkward place and less common?! Sorry for waffle but wondered if anyone out there as had similar one, in same place etc. Been really snappy, emotional, one minute strong, next minute feeling sorry for self! I'm so tired too and get headaches about 5 days per. Week often waking up with dull ache. Interested to hear from others with similar, thanks

19 Replies

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  • Hi Jo, I can't help you as I have no experience of your problems but just wanted to say welcome to the forum and I am sure someone here will be able to help you.

    Jan

  • Thanks Jan

  • Hi there. Good luck for today's appointment. We havent been through what you are going through but wanted to say that whilst things are different Feelings and emotions etc are often the same x. My 12 yr old had the bi not myself. Hea nearly 14 now. I made a diary. It helped me to remember and process all of the information and when he was able to, my son reads it too now. Headaches and emotional issues and tiredness are still with us. Thankfully so is Travis ❤. Hope u get some good news today. Please let us know how it foes if you would like to?

    Take care. Becky.

  • How it goes even! X

  • Hi Becky, thanks for replying and glad to hear Travis is doing okay. I'm a mum myself and can't begin to imagine going through similar with my boys. What a good idea, writing diary and then sharing with Travis. Take care too Ann I'll update later, fingers crossed,

    Jo

  • Hi Jo, my sister has just had an 11mm aneurysm coiled on her carotid artery with no ill effects whatsoever.

    She waited 10 years before a procedure came along that meant it could be done, during the hat time it grew to the he 11mm at operation date.

    She was originally told it was inoperable because of its site, sorry not sure if yours is in the same position but hers was on a T junction in the artery so the normal coiling procedure could have blocked the artery and caused death, but she trusted her surgeon and believe me they don't do procedures unless they feel sure of success, it's not in their interests let alone yours. But there is only you can decide, and it's no bad thing to google as long as you approach the information you find with the right attitude.

    Best wishes

    Janet x

  • Hi Janet

    Thank you so much for your kind words of encouragement. Gosh 10 years is a long time, glad to hear she finally got the treatment and is doing well. All the best, Jo

  • Not the same,but similar. I was attacked in 1985 and the meninges around the right temporal lobe was torn, and I was losing cerebral fluid. The cochlear was also shattered affecting my balance .My skull was fractured , seriously. The neurologist went to work on it ASAP. He said that it wasn't to stop fluid escaping, but stop things going in. To begin with I was warned that the operation may cause epilepsy and had to sign a waiver. I was in hospital 11 weeks. Of course, if you've read my previous posts I've had epilepsy since. However, you must remember that was 1985. I am now seeing a new neurologist, first since the1980s. Still for balance problems which never got any better. Anyway, sorry if I've made things worse, but I sincerely hope that you do get better. PS, welcome to the forum.

  • Hi Dave, sorry to hear your story, terrible what you've been through, but remarkable to pull through. Hope things do improve and you're able to find ways of coping and support, take care

  • I too had a carotid cave aneurysm, which was found whilst they were dealing with subarachnoid haemorrhage. They coiled it and have so far had no side effects. I do suffer from an intolerance of noise, headaches and taste buds need re-educating, but am fine in all other aspects of my condition, so please do not worry all will be fine. Take care.

  • Hi Johnny, thanks for the reassurance and sounds like you've been through it. Hope things are okay now. I've noticed that certain noises really irritate me? and smell weird smells that aren't there! Take care

  • Hi jo similar history seizures in 2015 months of waiting for tests then they found the annie. im waiting for the mdt outcome of my ba at right middle mca . Mines only small at 4mm but it has grown 1mm in only a few months and is showing weakness all round plus its across 2 so not sure what that means but they are recommending active treatment due to that and my morbid family history. I am the exact same up and down rage weepy extreme fatigue and constant migraines or on a good day the deep dull ache.

    For me it the waiting that is kiling me and the cock ups with appts and tests when they have me labeled as priority.

    Good luck with your appt xx

  • Hi, gosh, sounds like a long process, I was expecting to be seen, date for surgery, coiled and then get on with rest of my life, but don't think it will be as simple as that. My appointment was cancelled, last minute, due at 3pm today and call at lunch time to say consultant was ill.. hope you hear something soon. I'm in Leeds and have heard a few people having appointments cancelled recently. Just been reading comments out to husband and finally he says do other people get moody!? Think he thought was making excuses for me been an irrational cow! Shattered some days too. Glad to see other people experience similar though. Let me know when you get another app. through, hope it's not too long, take care, Jo

  • Ah sorry to hear it was cancelled fingers crossed you get another appt soon. My next one is 28th april but im learning now not to raise my hopes that anything wil happen quickly. Sorry to sound like a doom merchant but that is the reality it seems you only get speedy attention when it bursts. You do develop a quirky dark humour though and an appreciation for everything else you ever took for granted so its not all doom and gloom lol did you throw something at hubby for his comment lol

    The people on here are fab and so supportive.

    Good luck and please keep us posted on your progress. Xx

  • Hi jo, I have an aneurysm on the basilar artery, which like yours is hard to reach. It was found five years ago, like you I used to wake up with constant headaches, always felt tired , up one minute down the next. I had a cerebral angiogram, to stent and coil it, once they'd established they could reach it, at the time of surgery it was 11mm, it is frightening, but took six months for my surgery and I found that even more frightening, waiting to see if it would rupture. You have to put your trust in the neuro team, they do these ops every day, and are the experts, I hope you get sorted, and lots of luck xx

  • Gosh, thanks for sharing, must of been terrible waiting 6 mths with 11mm inside your head, I wouldn't of dared get out of bed! Hope you're okay now and thanks for the reassurance. X

  • Hi, appointment cancelled at last minute today 🙁 but after reading messages on here, sounds re-assuring and as always, there's people who are going through worse and cope amazingly. Hope to hear something soon

  • Hi jo, oh dear, cancelling your appointment is not good news, I always felt reassured when I'd seen my surgeon. No I did get out of bed and go to work , think this was more frightening for my work colleagues who thought I should have been wrapped in cotton wool lol. I was told because of where mine was if it ruptured it would be catastrophic, and would affect my breathing and swallowing.last year the aneurysm was found to be bulging, by fifty percent, and would have to have recoiling, but they weren't sure if they could do it, because of the coils that were still in place. Whilst waiting for an angiogram my aneurysm ruptured whilst walking the dog. I had a subarachnoid haemorrhage, I had emergency surgery, and they were able to recoil, and apart from poor short term memory, and balance being little poor when tired I have fully recovered, I return to work next week, after the bleed three months on Saturday, I hope I've not frightened you but wanted to reassure there is life after something like this, I hope you get your appointment soon, and you can be sorted, if they keep putting your appointment back, I contacted PALS, they will help good luck, Alice xx

  • Wow Alice, so glad to hear you're on the mend and going back to work next week. You've not frightened me at all. So glad I found this group and much more re-assuring than googling aneurysms as you only focus on worse case scenario! Received new appointment this morning, not too bad, 2 weeks away. Enjoy the weekend and hope work goes well next week, Jo x

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