Hi Everyone, I have just been diagnosed with a 4mm Aneurysm a couple of days ago, after a MRI due to 'thunderbolt' headache (strangely at the point of orgasm!) they said the headache is not related?? but I cannot imagine how not! Today I am waiting news of a meeting with Consultant after a CTA to determine the size location and shape and what to do next. I feel horrified that they sometimes dont operate on one so small and just wait and monitor it, my question was, monitor until when? until it ruptures!! ... but also dont like the thought of having coiling or even worse clipping!! How does everyone cope? I feel sick when i think of it, like I have a timebomb waiting to go off! Cant tell my family yet as my youngest son is just doing his finals at Uni. I wake every morning and everything is fine for a few seconds, then I remember...... I've had a headache and fuzzy head since fiinding out, but prob due to not sleeping properly now. would love to hear from anyone who can offer advise or support. thanks.
Hi.I totally know how you are feeling right now.when you say about the time bomb in your head it's exactly how I felt. I had no symptoms and they found my aneurysm by an unrelated CT scan.The waiting to find out what was going to happen was horrendous.I've now had it clipped in February.All went well apart from a couple of small setbacks...a swelling during surgery which caused a left side weakness,all now ok.then an infection in the wound site.After a clean and restricting I march all was well.when stitches were taken out 2 weeks later I thought all would be ok but it's taken a while to heal so I'm on antibiotics for another 2 months (already been on them 5weeks) in the hope it will heal and I won't need a debridement operation.Apart from all of that I'm back to work this week on very reduced hours,I'm feeling stronger and not so tired.I'm hoping to drive again soon. It's very normal for you to be scared but your consultant will do what's best for you.Try to keep positive and I'm sending lot's of good luck and best wishes that all goes well for you x
Thank you for your support and well done on getting this far, you sound like you've handled it all really well. I just keep thinking, there must be a mistake, they're probably going to say ...oh sorry it was just a piece of fluff on the scan picture!!
mandy miller said:
Hi.I totally know how you are feeling right now.when you say about the time bomb in your head it's exactly how I felt. I had no symptoms and they found my aneurysm by an unrelated CT scan.The waiting to find out what was going to happen was horrendous.I've now had it clipped in February.All went well apart from a couple of small setbacks...a swelling during surgery which caused a left side weakness,all now ok.then an infection in the wound site.After a clean and restricting I march all was well.when stitches were taken out 2 weeks later I thought all would be ok but it's taken a while to heal so I'm on antibiotics for another 2 months (already been on them 5weeks) in the hope it will heal and I won't need a debridement operation.Apart from all of that I'm back to work this week on very reduced hours,I'm feeling stronger and not so tired.I'm hoping to drive again soon. It's very normal for you to be scared but your consultant will do what's best for you.Try to keep positive and I'm sending lot's of good luck and best wishes that all goes well for you x
Feeling your worries :( I am in the same boat, I have x3 2-3mm :( I am waiting for an angiogram and then treatment. My Mother passed away in 1993 aged 35 from an aneurysm and left me 11 my sister 6 and a new born special needs baby :( I have three children, 11, 8 and 4 :( so, so worried too xx all we can do is hope and pray that we can be treated.
Lorna xx
Aww thats awful Lorna, really feel for you with such young children, it must be very hard. Luckily I only have myself and hubby to think about, although this week have had 2 of my Grandchildren staying! such hard work when all you want to do is think about yourself, I keep worrying about what I'm doing, can I bend, sneeze, cough, blow my nose??? all silly things that I dont know if they will cause a rupture! not sure what I want, operation or not!
lorna said:
Feeling your worries :( I am in the same boat, I have x3 2-3mm :( I am waiting for an angiogram and then treatment. My Mother passed away in 1993 aged 35 from an aneurysm and left me 11 my sister 6 and a new born special needs baby :( I have three children, 11, 8 and 4 :( so, so worried too xx all we can do is hope and pray that we can be treated.
Lorna xx
I have researched the common causes of rupture and it seems to be high blood pressure or a significant blow to the head but also that they can erupt without any cause, ticking time bomb sounds about right!! yes your right young kids and a lot to sort to ensure they are looked after-worst case scenario! I have had amazing support from Headway, highly recommend them if your in uk, also the brain and spine foundation have sent me loads of info.
I am s stressed with the here and now; work full time, my daughter has autism and I am in my final year at uni aaaaahhhhhh. I sometimes forget what I am living with then it hits me....I have three aneurysms........ Something has got to give! I hope they can coil, clip, fix these bombs, I want them gone! Watched my Mother die and her Aunt, both did not know they had them :( I know and want them fixed, lets hope the angiogram shows that they are fixable!
Have you had treatments discussed with you?
Lorn x
Dear Jacr and Lorna,
So many of us in this discussion group have been in your shoes, and made it through, really well! Me included. Indeed, being hit with this information is surreal and simply very difficult. But have faith that such aneurysms are these days treatable and curable. I feel like a broken record, but my advice to you is to go a highly regarded neurosurgeon who specializes in aneurysms, at the best hospital for neurosurgery you can go to. I live in Washington DC and went to New York to a world-famous neurosurgeon who specializes in aneurysms. I think it is so important to trust your doctor and go to a high volume hospital with a lot of experience.
Also, this website has a lot of discussions on the topics you bring up. Take a look at the discussions on small aneurysms. The internet also is very informative. The bottom line with small aneurysms is their rupture risk is highly dependent on their location. Your course of action depends on several variables, such as your age and general health, location and shape of your aneurysm.
Good luck! Stay strong and be optimistic!
Michele
Michele is so right to find a neurosurgeon and large hospital that are well experienced. Mine was a intervention radiologist who coiled my small aneurysm because of it's location at the bottom of my brain in August 2014. My surgery was done in a great reputable hospital well known for neurosugery. Like you it was found after a headache, but also had a stiff neck that led to a MRI and discovery. The surgery was uneventful and I went home in a couple of days. I know you are scared, I was too. But I tried to stay strong and be optimistic. You have alot of people before you who have come through this just fine. I'm glad they found it and now can come up with a plan. You can get through this and live your life. God Bless!
Thank you X really appreciate your advice and I am just being allocated a advacot to determine which surgeon and which hospital 
I will survive this. …I Need to survive for my babies xx
Yes thanks joann and Michele its good to hear that people do come through this alright. Lorna you are amazing with what you are having to do! please get help somewhere!! even if it is talkin to me sometimes.... I am in UK and will look into headway (not heard of them). I have been referred to a neuro radiologist who does the coiling and next week will see a neuro surgeon who does the open surgery. I have heard the coiling routine and must say prefer that to the open but have to hear what that involves next week. Again I think myself lucky that I have private medical insurance from hubbys work and so have seen people pretty quick. My aneurysm is low down and it is unsure as to wether it is inside the lining of brain or just outside. This means a rupture outside would cause no harm but one inside would, I would like to hear a surgeon say yes you must have surgery or no don't! but he just said you must weight up the risks yourself, it may never rupture but then it could or it could and cause no harm! and then the risks to coiling, mini stroke but should recover from that quickly. Open surgery I think is more invasive and longer recovery but then its gone. Does anyone know if after coiling there is no more risk? as the dr yesterday said that they want the wall of artery to grown over the coil (stent helps this) therefore blocking it off, but cannot be sure if this happens althought it usually does! ..... I saw Dr in Harley Street, who referred the RAdiologist yesterday who is in the National Hospital of Neurology and Neurosurgery, so I think this is a reputable place xx Lorna, sending you love, hang in there xx
Thanks Jac, same to you! hope you get your answers quick! I am meeting a psycho therapist on Tuesday who is part of the Nero rehabilitation team. Hopefully they will support my mental heath!(Feeling slightly stir crazy!!) I have only the NHS and my experience so far has been horrendous :( I had MRI nov last year, it took till march to meet with a consultant then the referral was not sent to radiology :( been waiting 3mths to find that out, had to get health watch involved as the waiting list for angiogram is 6-8 mths!!!
I tried to go private for the angiogram and then the consultants secretary said I would not be able to be treated on NHS! So I am having to make a complaint and move hospitals :( SO SO STRESSED XXXX
Headway have been amazing for support and sign posting, highly recommended then xxx
That is awful !!! How the hell have you coped??? November till March?? ...... I'm not an expert but I am absolutely sure that if you paid for angio you could use that for future NHS !! why not?? (she may have meant you couldn't then have NHS with the same hospital or Radiologist) but I'm sure you could take that angio (its yours if youve paid!) to any NHS
I dont know how you have done it, My longest wait was from seeing GP (week wait for that appt) another week waiting for private referral letter from GP! 2 week wait for private neurologist appt. But that was all before I knew what I had, was just for the headaches. I had MRI on same day I saw consultant which was 6 days ago! since then I've seen 3 differnet docs all together and had CT angio with the private insurance! and it seems like forever to me!... however our policy dosent cover the National Hospital as I mentioned before where I will prob want to go, this neuro radiologist seemed fab, but we can still have it, so long as we pay the difference from a hosp they would have covered. xx
Good luck and you sound like your in safe hands xx xx xx
let’s hope I get somewhere soon, as I am slightly loosing the plot!
I am going to ring my GP again Monday xx
hi everyone,
my unruptured aneurysm was diagnosed last may and I am having clipping in june so that was a long wait to see the neurosurgeon and now waiting for him to be able to schedule surgery time and they say mine due to location and size is a risky one. I work as a manager full time in fast paced restaurant so I worry about what I can do and not do , plus make everyone around me nervous too. Thay have literally yelled at me to drop things if they think its too heavy as I forget about it or I think I am superwoman. I am getting nervous too about my time bomb lol as i am starting to get really tired and confuse easily and thenI cry and then my blood pressure goes. this site is great though I have learned lots and have my nerves settled here lots.
and everyone understands how I we feel and thats helpful , I hope everything goes good and everyone is here for you
kim
I have had a ruptured aneursym in 2008 and in 2014 they found another aneursym. In 2015 they clipped the second aneursym. Your aneursym needs to be clipped or coiled but your life is not immediate danger, or the doctors would not let you leave the hospital . I focused my worry on making steps to have surgery. Tell your family and explain you will need a surgery and find an expert Neurosurgeon you can trust. You are stressed so that it probably why you are experiencing headaches and a fuzzy head. Remember aneurysms do not grow fast.
Yes you are right, this is my first week of finding out and have been quite stressed, it was such a shock, I keep thinking, it cant be me? I'm not an ill person!! However feeling better today after finally sleeping all night!... Have investigated the coiling more and it seems quite positive, this site also makes me feel less ...'alone' in it all, and its great that so many people take time to give their success stories to help others like me feel better.
I went through the same roller coaster of emotions. Please believe me when I say you’ll get used to this and then you’ll even start to want to fight it. My life became ruled by the fear of my aneurysm (10mm) but you’re so much more than that aneurysm. Every headache I had I panicked, every fall or anything I would panicky but that’s normal when you discover something like that. You will be fine and yourself again it just takes time.
Ask lots of questions. Try to avoid surgery if you can. I’ve had two operations (coils and stents) because I was young and it was big they wanted to operate. If you can avoid it and you can be monitored I would do that. That’s only me though.
Good luck!
Hi Bloomsie,
Your entry is spot on in terms of the roller coaster of emotions. For me, I don't think it is all that easy to get 100% used to the fact that I had an aneurysm and it was indeed clipped. Even though my operation was more nine months ago and I am doing so well, I do probably think about this subject every day.
I certainly agree with your advice about asking a lot of questions. I would be more cautious in saying that one should avoid surgery and monitor an aneurysm. I have done a lot of research on the subject of passive monitoring verses having a procedure (since I was considering both options seriously) and think each case is really so distinct that it is hard to make a blanket statement. This is such a personal decision on how much risk a person is comfortable living with. An experienced doctor needs to fully assess the situation and make a well-informed recommendation based on data from decades of studies in the field.
I, for example, did not want to live my life feeling that sometime in the future, the aneurysm could burst. I felt that my chances over the long term would be better to deal in the short term with the aneurysm in a controlled setting of a skilled surgeon in an operating room of a big hospitals filled with experts, rather than face a rupture in some distant place without any help. I feel blessed now to be over with the whole darn episode in my life. In the last nine months, I have travel around with world with a feeling of freedom and relief that I simply would not have had without the operation.
Having the operation was one of the hardest decisions I have ever made in my life. I am just glad things have worked out so far for me. I can only hope the same for all the other people who face the agonizing decision that we have gone through!
Thank you Bloomsie, can I ask why you had two ops? was there any probs with the ops ? ........ very strange how you posted this now, as today I have seen a great surgeon who is insisting on me REALLY thinking about having it done, he did say coiling and stents would be the way to go rather than clipping due to location and size (4mm) but that I had to consider the REAL 6-8% chance of mini stroke during/after the op due to clots forming on the stent, even tho I would have to be on blood thinners for 6 months after. This has now really thrown me! I've known for 10 days now and have really calmed down (i would have done the surgery myself last week!) and am really considering if I could live with not having it done. Surgeon actually also said monitoring can be done but why as getting bigger dosent mean it will burst as staying the same dosent mean it won't! That we have them operated on when they get bigger because we lose our nerve (doctors too) , just keep blood pressure checked and do everything as I normally would, as there are women who have given birth with one which didnt rupture but also some people he sees have ruptured whilst watching tv !! what a decision, like you say Michelle, the hardest of my life
Bloomsie said:
I went through the same roller coaster of emotions. Please believe me when I say you'll get used to this and then you'll even start to want to fight it. My life became ruled by the fear of my aneurysm (10mm) but you're so much more than that aneurysm. Every headache I had I panicked, every fall or anything I would panicky but that's normal when you discover something like that. You will be fine and yourself again it just takes time.
Ask lots of questions. Try to avoid surgery if you can. I've had two operations (coils and stents) because I was young and it was big they wanted to operate. If you can avoid it and you can be monitored I would do that. That's only me though.
Good luck!
Really is helping having all this advice I never considered just monitoring them? Well I met with the Nero rehabilitation team yesterday and I am so pleased that I have a therapist who is helping me now on this roller-coaster journey, she has given me sound advice and great support so with this forum and her help I have been signed off work for a month and I am going to start fighting the demons in my head (including the aneurysms!) and I will do every thing to make good choices and survive this next chapter.
Lorna xxxxx