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Thread: four untreated aneurysms

  1. #1
    pam Guest

    Default four untreated aneurysms

    Hi, I am very pleased you have set up this section on our forum

    I was diagnosed with multiple (seven in total) brain aneurysms in December 2004. I had had visual disturbances for many years which I was told was migraine (and it could well have been migraine). I had also had problems with pain and tingling in my facial nerves- I had had an episode of Bells Palsy on the right side of my face 16 years previous (made a full recovery) and then Bells Palsy on the left side of my face the next year (again made a full recovery)but I would get pain/tingling in the nerves over the years, from time to time if I had dental treatment or had cold etc and I would visit my doctor and get some steroids which would fix the problem. In 2004 following some dental treatment I got the symptoms back, I was also having some dizzy spells and some pain in my ear, which in the past had been connected to the facial nerve problem. My usual GP wasnt there, so I saw a new GP, and fully expected the usual prescription. He said he thought I may need a brain scan but thought it would be wise to refer me to an ENT Specialist. I saw an ENT specialist three months later who could find nothing wrong with my ears so he sent me for an MRI Scan which I waited eight weeks for.

    The MRI scan revealed two possibly three anuerysms, I was referred to a neurosurgeon, waited just six weeks to see him and he referred me for an angiogram which I had eight weeks later in December 04. The angiogram showed 7 aneurysms.

    On Feb 16th (yes it is my three year anniversary tomorrow and I will be celebrating life !!!!) after two cancelled operations due to lack of high dependency beds I had the first aneurysm coiled ( 8.5mm) In June 05, after another two cancelled operations I had another two coiled. They managed to totally occlude all three aneurysms and MRA Scans since have shown they have remained totally occluded.

    I have four remaining anuerysms which are tiny, and which are being monitored, these aneurysms have not changed in size or shape since diagnosis which is a good thing. However, I find it incredibly hard living with the knowledge that I have four untreated aneurysms, my doctors say that the risk of coiling such small aneurysms outweighs the risk of rupture, most of the time I feel ok with this, but there are times when it really gets me down. When I last had an MRA scan in June 2007 which showed all was well, I was told I wouldnt get another MRA scan for four years and they didnt expect any changes within the next four years, but it still concerns me that any one of these smaller aneurysms could change or rupture and I feel a bit let down that the monitoring isnt more frequent
    (When I was discharged from hospital I was told I would be closeley monitored, I was given a scan later in 05, in 06 and 07, but I dont feel waiting four years for a scan is close monitoring!)

    Well this is my story.

    Pam

  2. #2
    Join Date
    Jan 2008
    Location
    Hyde, nr Manchester - SAH 13 November 2007 - Post.Right.Comm.Artery Aneurysm (coiled)
    Posts
    269

    Default

    Hi Pam

    Gosh, you are showing off: 7 aneurysms! Only joking.

    Well at least the ones that are left untreated are smaller, but they must be a worry and sort of haunt you.

    I suppose one good outcome is that you know what to expect and that if you had certain symptoms you wouldn't hang around waiting for your GP to refer you, you'd get yourself straight to the hospital where you had the neurosurgery.

    Four years does seem a long time to wait though. Perhaps you could discuss this with your own GP? See what he comes up with. Perhaps his surgery would fund a MRI scan, if he thought your condition was deteriorating?

    For myself I have one reasonable sized aneurysm still untreated, but its in a place they can only get to through the skull and it would have to be clipped not coiled. I don't fancy the clipping at all, but if or when, I'd do whatever was required at the time.

    Try not to worry too much, after all you didn't have an actual brain haemorrhage so perhaps your arteries are strong. (Correct me if I'm wrong and you did have an actual haemorrhage).

    I'm sure there are others on here who are much better qualified to respond to you than me. Just wanted to say hello and put in my two penn'orth.

    Take care

    Hugs

    Lesley xxx

  3. #3
    Join Date
    Mar 2008
    Location
    Surrey
    Posts
    6

    Default Re: four untreated aneurysms

    Hello Pam
    I had a sah in 2003 which was clipped, and a 2nd aneurysm on the other side of my brain clipped before it ruptured. I also have, and its strange to say, 1 or 2, I can't remember, remaining aneyrysms in a different part of my brain which are being left untreated as they are small and in a part of the brain that isn't life threatening if they rupture. I don't normally think much about them, probably as full concentration has gone into recovery and my aim to get life back to normal! But, i have had a headache every day this week which is really bothering me and making me paranoid that I'm suffering from a leaking aneurysm. I did go to my GP yesterday, but she has put my pain down to stress, I'm still worrying like mad but trying to carry on with daily life.
    I hope i'm not adding to your worries by saying the above, i just thought that if your untreated annies are worrying you, you're not alone on that. I was told mine may be looked at in about 2009-10, they're no worry to the hospital, which feels very strange too, we're just left to carry on living with them in hope that no problems arise but that can also leave us worrying like mad.
    Laura
    SAH/mini stroke Clipped July 2003, 2nd Aneurysm clipped Nov 2004

  4. #4
    pam Guest

    Default Re: four untreated aneurysms

    Hi Laura

    Thank you for sharing your experience with us, your positive attitude about concentrating on recovery and pointing out that the hospital are not worried about the remaining aneurysms (same as my hospital and me) has helped me.

    I do agree very much with you when you say that we are more or less just left to get on with it, but of course we do worry.Our neurosurgeons and neuroradiologists do a fantastic job saving people's lives,in my case I will always be indebted to them for their skill. However, I really do think that a better insight into the associated anxiety with untreated aneurysms and how to help those patients would be a benefit to patients. Like you I recently visited my GP re headaches and was referred back to my neuro who told me it could be stress, although I was prescribed some medication for neuropathic pain which has helped me. However, another dimension has been added to things this week. ...............Since 2003 I have had occassional bouts of acute joint pain, with fever and tiredness. and headache. The tiredness and headache of course I always put down to post operative recovery from the aneurym surgery and the fact I had other annies. For the past 6 months its got more frequent and a recent blood test result got me referred to a Rheumatologist who this week confirmed I have mild Rheumatoid Arthritis which I am now coming to terms with. I have been told that it can have an effect on the blood vessels, (can cause inflamation etc) so just maybe this contributed to my aneurysms and just maybe the treatment I am now getting for it could prevent any further development of my aneurysms, I hope so.

    Thanks again for taking the time to share your experience

    pam

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