gemma Posted December 17, 2013 Posted December 17, 2013 (edited) Hi everyone I'm Gemma. I'm 34 and live near southend in essex with my husband and our three year old son. I work full time as a HR manager and have never had any serious medical conditions. In October this year I was diagnosed, by chance, with a brain aneurysm. I'm now two weeks post coil embolisation and recovering well. I was so surprised to have found an active forum like this one, i felt quite isolated, but there seems to be a great spirit of community, support, help, advice and lots of hope. I feel humbled by reading the (so far only few) posts of lots of incredibly serious and frightening stories and I admire each of you who's stories I've managed to read so far. And to be honest, I feel that mine has been so straight forward and relatively low impact compared to many others. But in any case, I would still like to share my experience and hope that I'm able to join the community as i still have lots of unanswered questions (like most!) and offer any support I can. In late August 2013, I was at work as normal, and well, feeling normal! Having just had a conversation with one of my staff, I suddenly felt like I was having a head rush. Seconds later this was followed by a sharpe pain in my head just above my right eye, with the pain 'exiting' behind my right ear. I then felt dizzy and disorientated, and my eyes began to 'sparkle'. Fortunately I remained upright and didn't pass out (I was on our manufacturing shop floor near machinery so that could have been quite a messy accident). I was taken outside and escorted back to my office. The sharpe pain subsided after about 20minutes, but the sparkling in my sight remained and another, band like, headache formed. I came home and slept for a while. The next day the band headache was still persisting and my sight still not right so I went to see my GP. Migraine, she said! So sent me off with a script for sumatriptan. I refused to take them as I suspected I might be pregnant (turns out fortunately I wasn't) and suffered the headache for a further three days. I felt like I'd been kicked repeatedly in the head, but after the few days it eased. However, my sight in my right eye didn't recover so well. After about two weeks of blurred vision I went back to my GP, who promptly told me off for not returning sooner! In any case, I was referred that same day to an eye specialist who performed numerous tests and checks on my sight. My vision was excellent so he suggested further neurological investigations, though i took him two weeks to inform my gp and a further week for my gp to act on this information! Being on the good will of the NHS at this point, and finding myself now in October, I decided to utilise my medical insurance and went private. So I guess this is where my story may differ to a lot of other people's. A referral was made to a headache specialist, who saw me on a Thursday. And after performing, again, numerous tests, decided that it was likely just a migraine and that it was just 'one of those things' that my sight still wasn't normal. However, and this was my godsend, he said he'd like to have an MRI done just to rule out anything else, which he suspected there wasn't! This was done the following Thursday morning with my results scheduled to be discussed the following week. That evening I received a phone call to return to see my specialist 'as a matter of urgency'! Well I guess you can imagine what was going through my mind, as I'm sure many of you have thought or been told the same. So off we go to see him and there he tells me about the aneurysm. He says they quite common and easily treated, so at the time I didn't really realise, or appreciate, the seriousness of the condition. I decided at the time not to google or research it too much in case I found something too scary, so just went with the flow in terms of my next referral. I was put in touch with an excellent consultant in a private hospital in London (st johns wood) called the wellington. The consultant is amazing. He also practices out of London and the barts hospitals and if anyone wants his name please pm me (not sure if I would be allowed to name and praise on the main forum?). He requested a slicing MRI which was squeezed in on the day of my first consultation (31 oct). My case was reviewed on 4 nov. on 5 nov I was back to see him with their views on my case and surgery etc. It was there that he explained that my aneurysm was unusual, and quite rare. It was a daughter aneurysm. My berry shape had further stretched and formed a bubble, so instead of looking like a berry, it was more like a Russian doll /hour glass. Whilst the width was only 6.7mm, the overall length was well over 10mm. It appears my initial headache was no migraine, it was my aneurysm expanding and stretching! i was so lucky it hadn't ruptured. So coiling was recommended. I met my neuroradiologist on 7 nov and was scheduled for my op on 4 dec. Again he's a fantastic specialist, and lead consultant at barts. .... Apologies here, I didn't realise I was writing war and peace, sorry its become such a long post! I will try to shorten the rest .... One week prior to surgery, went on a course of asprin, and will remain on that for three months post op. Ok. So op day, and recovery.... My op was at midday. I was able to walk to the theatre where I was presented a heck of a lot of advance medical equipment! 4 tv screens, a ct scanner, the actual robotic arms he'd be using (instead of actually physically feeding in the lines, coils, etc) and lots of other typical stuff, I would assume! Anyway, I digress... I woke at 4.30pm in IC as planned. I had to remaine lying flat for six hours, as planned. I was able to sit up, albeit groggily and with nausea, at 10pm. I slept from midnight until 7.30am, which my IC nurse joked was unusually good! At 1pm I was taken to my ward/room and was up on my feet by 2pm, and showered shortly afterwards! I spent a further two night in, again as planned, and was discharged ten days ago. I have mild occasional head pain, right where I think the aneurysm might be. It's a bit like something in there is twisting,, but I've been told to expect this. I've also had a couple of minor side effects of being operated on, but nothing severe or linked to the BA. I will have MRIs at three and six months post op, just to be sure the coils have settled etc. form there we will be able to relax a bit I should think ... And hope! I'm now looking forward to being able to pick up my little boy again, and have his on my lap for cuddles (something I took for granted before) and to getting back to what I hope will be normal family life for us. As I said above, my experience has been extremely mild compared to so many others, and whilst I'm grateful for that, I'm also in awe of how strong you must all be to still be here today, sharing your experiences and giving so much advice to others like myself. Oh, I'm not sure where to add this, but I will have to have further surgery in a couple of years time. Unfortunately for me, the neck of the aneurysm is quite wide and requires a stent. However, because of my age (childbearing) and our desire for more children, my surgeon suggested not doing that time time around. I am lucky in that I am not in any of the risk factors so he was content to leave me be for now So I will be asking lots of questions over the next few weeks, months and possibly years lol. Phew, again sorry for the mammoth post, but thank you for reading. It's done a lot for me just being able to get this all down in writing and to be able to share it with people that understand xx Edited December 17, 2013 by gemma Quote
kempse Posted December 17, 2013 Posted December 17, 2013 Hi Gemma, a warm welcome to BTG:-D It doesn't matter how long your story is, all stories are unique and personal and I too found it a great way to release everything and found it quite therapeutic. I am so glad that they found the aneurysm before it had chance to rupture - that really is a blessing. More often than not it appears that most of us don't get any warning signs whatsoever beforehand. Any operation on the brain will require 'recovery time', so take it easy although not always possible with a young one around! I too have a wide neck on one of my aneurysms which they are monitoring at intervals. Good luck with your follow ups. Take care Sarah Quote
Daffodil Posted December 17, 2013 Posted December 17, 2013 Hello and welcome Gemma. So glad they caught this for you and Well done for getting through all that. I can imagine it's been a bit of a rollercoaster the last few months , I hope now you have had the coiling surgery that it will give you some comfort and just rest rest rest over Christmas cuddling that lively little chap and let everyone else run around. Isn't the kit they use amazing? I remember marvelling at it during my angiogram, that and the fact how young everyone seems and I was only 40 at the time it might be worth seeing if your company offers access to counselling , I would suggest it is worth setting that up after Christmas, I found it incredibly helpful to talk to someone about the feelings this kind of event can bring. Your consultant sounds lovely, I have to say I have been very fortunate with my health professionals too but I know not every one has had similar good fortune. Don't be tempted to rush back at doing everything just yet , take your time, be kind to yourself and just breathe in all those lovely moments just a little more slowly and deeply. Quote
Hoofbeat Posted December 17, 2013 Posted December 17, 2013 Hi Gemma I just wanted to say welcome and thanks for sharing your story. I am still fairly new to all of this myself and it's great to hear other people's stories. So pleased to hear that everything is now looking positive for you - make sure you rest lots and drink lots of water. Chloé Quote
gemma Posted December 17, 2013 Author Posted December 17, 2013 Thanks for your quick replies Sarah, yes it's definitely therapeutic jotting all this down .... I certainly could have written a lot more, but I thought it best to keep it tame until I've settled in lol. Daffodil, have to laugh, even at 34 i felt old! Mind you I'm grateful of the modern medicine and the younger generation driving the change, giving us less invasive surgeries and reducing risks Thank you Chloe, yes water is something i was great at whilst at work, but its lapsed somewhat these days .... Will skip off now to fill up my water bottle xx Quote
Gill C Posted December 17, 2013 Posted December 17, 2013 Hi gemma & welcome to BTG Your story is pretty similar to mine, admitted to hospital after the pain behind my eye & then sent home with it being a migraine!! The main difference for me is that I didn't pay to be scanned privately (although we had considered it) as I don't have health insurance. My anni didn't rupture either (I think you are the only other person I know of) & I was clipped 6 weeks after the anni grew. It def pays to take things slowly as its a massive op & a big GA for it. Lots of water will help with the headaches & sleeping when you need to, resting when you can. Lovely to be able to have cuddles with your son, I lived for that moment in hospital! Have a lovely Christmas & heres to a better 2014 for you xx Quote
Winb143 Posted December 17, 2013 Posted December 17, 2013 Hi Gemma, Welcome to BTG. I remember nothing for a year although my family say I sang with them !! (Poor family). In 2010 I had a shunt fitted for hydrocephalus and it was like waking up from a bad dream, my surgeon switched my lights back on by putting a shunt in my head as I call it. You will have times when you touch your head and think "is all ok in there" give it time and try and relax . As my surgeon said to me "Try not to Stress as stress isn't good for you" Best advice to date, so keep going onwards and upwards. We will all get there eventually. xx Keep happy Always xx WinB143 xx Quote
gemma Posted December 17, 2013 Author Posted December 17, 2013 Thank you winb143, that's great advice. Sounds like you had a terrible time, but have come through it all a positive and strong person. Gill, are you a similar ish age? I must admit I was anxious to get home, knowing how much hard work my little boy is, but its worth every second of tiredness for those lovely cuddles isn't it? Thank you and best wishes for 2014 to you too x Quote
Gill C Posted December 17, 2013 Posted December 17, 2013 Gemma I'm an older mum, I had my anni at 43 (my son was 4). Yep my hubby had a very busy schedule with nursery & coming to see me & then telephoning people in the evening to tell them how I was. Fortunately his work were amazing & allowed him to work part days & then when I was discharged he worked from home for 2 weeks. I couldn't drive for 4 months so he was still taking Nathan to nursery & picking him up, the nursery was only charging us for half days as normal due to the unusual situation (they were amazing to us). Quote
gemma Posted January 23, 2014 Author Posted January 23, 2014 I've popped a little (well quite long actually) update in the Untreated anni section for anyone who wants to see how I'm doing xx Quote
Louise Posted January 24, 2014 Posted January 24, 2014 Hi there warm welcome to the site, glad you found us. Quote
Superted Posted January 24, 2014 Posted January 24, 2014 Hi Gemma Thanks for sharing your story. Sounds like after the hiccup of a wrong migraine diagnosis, they managed to sort you out and your recovery sounds remarkable! I unfortunately passed out and was put in an induced coma before I had all the MRI/CT scans and the coiling done so I didn't get to see all the cool equipment, other than the few things that I was attached to when I came to in the ICU. Would have loved to see it as I had never heard of coiling before and didn't believe my family to start off with that I had brain surgery and they did it through my groin!! Anyway... Take care of yourself and enjoy the cuddles. xxx Quote
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.