It’s my 3rd week since finding out about this aneurysm , I keep getting panic attack’s and trying to not get emotional around people as I’m struggling to come to terms with this
Had a mra last night as was called in they forgot to do it on the 8th aug on the mri so had an urgent call to go back , I don’t know whether I’m coming or going with apps right now I’m exhausted trying to do normal things but I just can’t I really wish there was like a support group meeting place locally where I could go to I’m feeling isolated as well . As much as people support you and say stay strong , it’s hard to I wake up feeling thankful that I’ve even woken up , and despite the specialist saying it prob low risk , I don’t remain convinced , I feel totally different knowing about this now ,through a routine neck scan ,people say at least you know , right ? , I dunno now I know and it’s just there and there just watching it I think it’s worst knowing I can’t do anything about it ,like it could just take me anytime and I’m sure others feel this as well , I’m fed up depressed , at my lowest point in my life at 53 , I thought by now I could enjoy my grandchildren do all the special things
But it’s changed in 3 weeks. I’m not s happy person and my zest for life has diminished I’m not feeling sorry for myself yet I’m angry at life giving me this
Make sense to anyone
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Milley2
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Hi, I know exactly how you feel, I felt the same, I was having an MRI for something totally unrelated and my 2 aneurysms were found incidentally. I was told don't worry and then referred to a neurosurgeon, when my app came through it was while I was on holiday and at that point I was to frightened to go anywhere. I called the hospital and told them about my holiday and fear of going, a different consultant agreed to see me. I took my husband with me as I was petrified of what I might be told, its like being a death sentence without knowing the time isn't it. The consultant was lovely, calmed me down straight away, he said even though one of my aneurysms was large at 9mm it had probably been growing for 10 to 15 years and the percentage chance of it rupturing in the next 5yrs was 1.5% He said both aneurysms were inoperable because of the location but he would talk to other surgeons in Oxford ( im in Coventry) Since then, I went on holiday with no worries, by January of this year I had more apps for check ups and an angiogram to analyse the exact size, thickness and location of my aneurysms. I met with the radiologist from Oxford who said there was no problem to repair with endovascular coiling and a stent, the risks were no higher than leaving it. I am now 9wks post op and feel fine, off on holiday again next week and a full check up in December, only one aneurysm repaired and the other will be reviewed regularly. Sorry my reply has been so long but I thought it might help you, the team ive had around me have been fantastic and positive, I can call my nurse anytime if I have any worries. Hope ive helped a bit
I have two, left and right bilateral PCOM aneurysms, they are both bilobed (wide necks) which are pointing down so inoperable for clipping! Ive had the 9mm treated...6 coils and a stent, the other is 3.8mm and will be observed regularly. I was treated in Coventry but the Dr came from the John Radcliffe hospital in Oxford where they specialise.
Has your Dr referred you to the hospital ? at 6mm it would need a neuro specialist to decide what route to take. What apps has your Dr advised if you don't mind me asking?
I have never had high blood and also no history in the family of this.
I went to London this week on a private app at the royal London dr Chris uff
He did put my mind st some rest but I still don’t feel right about things
My Gp basically said inoperable
Dr uff said they would watch it but he is doing further images but god knows how long I’ll wait as it’s on nhs
In the meantime I’ve had a referral for Northampton hospital , so I’m even more unsure of who’s dealing with me
I asked to be referred to dr c uff at royal London. On nhs and he is happy to see me there .
Not sure if my Gp is confusing things here
I’m chasing different apps daily ie tomorw I’ll be back at Gp asking what’s going on
It’s stressful enough I can barely drive due to my original neck pain of c5 c6 disc prolapse I could honestly cry and have done but I try and keep my emotions down right now it’s just a horrible time
I wake in the morning now with no incentive to carry on
It just there and I have to wait for it to decide my feet whether it stays the same or decides to show itself ! I hate my life my now 3 weeks ago I was cutting my lawn and doing lunch for my granddaughter now I can’t have her as I’m to scared she’s only 6
Oh dear, im sorry you are feeling so bad, I think im really lucky I seem to be in the system and things seem to move steadily forward, in Coventry they have multi discipline meetings every week where all the various surgeons and consultants discuss various patients to decide on the next step, I think they do this everywhere. I was told at the beginning that smaller aneurysm are normally observed as long as there is no other history.
I did feel like you at the beginning but the more information I got the more it helped and im lucky I can call the specialist nurse whenever im worried or have questions. Even after one repair I still stress over every ache or pain.
I think the what I always thought at the beginning, is it best to know or not? there is a huge amount of the population with aneurysms and they will never know and die from old age, there are some who will have a stroke and others like us who know, in a way we are lucky something can be done in most cases, if its in a risky place like mine the endovascular repair is an option and relatively safe. You have to remember you have had this for years with no issues so hopefully you have plenty of time for the professionals to sort it.
I decided I was wasting my days worrying (which raises blood pressure) when I should be enjoying every day instead, I have a 2yr old grandchild who I love running around the park with I wasn't going to miss out on that.
It is very scary and I feel for you, its still a new diagnosis for you but once you can get your head around it you can maybe feel a little better about it, you are not on your own, especially with forums like this.
You have made me feel better today and I thank you for this . It’s only cause I live alone I’m petrified . I’ve stopped like everything like visitors of friends etc funny that before I was diagnosed no one bothered now they know they all want to text me etc so I’ve realised who my real friends are .
I have 2 grNd kids 6 and 3
There amazing , I only have 1 son who is devastated and doesn’t know quite how to act around me , you know what boys are like .
He’s only 25 , so it’s been emotional and tough , I’ve had to really step him up in case something happens Re wrote my will ( bit extreme ) but I’m super organised . And even done a LPA in case they operate and I loose memory but hey that’s just me being
Me , as I’d bought him up in my own . It’s immensely difficult for the even thought of not being around for him .
The only company I’m wanting right now is my little dog and I’m pretty sure she knows somethings up . Bless her . Gosh she has taken my mind of things .
I’m hoping for more answers at the Gp tomorrow , it’s time consuming ,and draining . I was before this just setting up my own business again . I’ve put that on hold due to being in pain with my neck . I sound like s right one don’t I , past 50 I declined I think , I’ve always been very well the off cold etc nothing like I’m experiencing now just 6 weeks ago I was in Spain for a month visiting my friend , I travel alone as I don’t have a partner .
How things changed from 1 simple ct scan of my neck area .
Going on a bit here , but it has helped me a lot chatting to others and yourself
Your very lucky having your husband there
I don’t know if it’s a good or bad thing knowing but all I know right now is I kinda wish I wasn’t told if I’ve got to 53 with not knowing , why now for me right now it’s making me worry and feel worse .
Living alone must be more difficult, I think you need people around you even its to talk the ears off them lol although a lot don't know what to say, but I decided I didn't care if they were awkward I needed to tell people, not for sympathy, just to get it off my chest lol
As for the will and stuff, I checked all that so im sure its normal, the initial diagnosis is a shock but honestly it does improve, you have had this for years and been fine ( except for your neck pain) you will be checked on regularly, write all your questions down whenever you see a Dr/Gp, make sure they answer everything you need to know, I reckon my Drs groan every time I walk through the door.
If I can help at all just let me know, please don't give up life can be good, if they offer a repair (endovascular) go for it, a couple of days in hospital and then back to your normal life with regular check ups. you have got age on your side so don't shelve your new business just yet. Let me know how it goes tomorrow.
I'm sorry your GP didnt help, at least you have an app now with the people who specialise, think positive, if it was a real emergency they would be seeing you next week! They know what they are doing, believe me. I know exactly how you feel and it's so frustrating, but try to remember how happy you were 4 wks ago when you didnt know, nothing has changed except the information you now have, go to work, enjoy your grandchildren and your garden, you will be fine😊 I still have a 4mm anuerysm which funnily enough now ive had the large one repaired I dont give it a thought, I'm even back to exercising.
I have my granddaughter tonight which I love to do but I’m very nervous now
Found a lovely group on Facebook to
That’s been helpful
I have constant head aches there only slight
But also some weird fuzzy feeling on top of my head it could be me being over anxious
It’s such a worry
But I never know when it can just rupture that’s the one thing I’m very concerned at
I’m better with people around me but right now I’m with a 6 year old which takes my mind of things but I don’t want anything to happen whilst she’s here with me just want it gone but if they just going to monitor it I’m stuck really with the anticipation
It’s weird cause today prob been one of my better days and I’ve quite a sore sensitive head on top like a head ache I’m just not sure if I should be concerned or not
Can’t be good can it stress wise I mean
I’m exhausted keep thinking if it
It’s goid yr exercising again I need to get back doing things rather than moping around x
Aww bless you, your not moping around your anxious which is understandable, I had and still do some days have strange symptoms but the consultant told me they are totally unrelated, the majority of anuerysms found like us are asymptomatic, its stress and anxiety that gives us strange things, at 9mm the chance of mine rupturing was 1.5% over 5yrs so I reckon that was quite good odds😊
Yours might never rupture you could live until you are 100 lol and you have only got to wait until October to get more details. I'm glad you have your grandchild with you, grandchildren make the world a better place dont they.
It will pass, put it on the shelf and get on with living. Think about it, you may have had it for years with no issues. Just because you know about it does not mean they will do anything as sometimes they just monitor an aneurysm. I convinced myself I had a brain tumour before my aneurysm burst and I then had it coiled. I get what you are saying as I'm waiting to see if they want to operate again ( had 2 really bad weeks worrying myself stupid about it). But now it's on the shelf and my life continues. Hope you are good.
I must say yes google isn’t the best thing for me right now I’ve had much more info on this it’s 3 weeks now and each morning I wake I just feel over whelmed I guess I just want my old me back and can’t see that ever being possible I try do things and then get really scared and emotion just takes over . Thought I’d lived quite a ok life not an easy one usual stresses .
Why does this happen and stop you in your tracks ....... I feel numb and life feels pointless it’s monday and I’ll be back up Gp today 2.30 from my sat eve brain scan MRA which wasn’t done when it should of been on the 8th aug
Yes doctors seem oh so cool with it and off you go I have never prayed so much
Bedtime is worst trying to get to sleep then I wake and wow it’s intense doom is back I’m hoping I can live with this and put it on the shelf
Bedtime and a brain that will not shut down even when shattered is the worst torture in the world. I don't think I have got my head around what's going on myself as I've said head went bang end of January, operation, slow slow slow recovery and then it hit me had 2 terrible weeks but over it now and just carrying on. Not forgetting I've worked for the past 36 years and had to adjust to a life without work ( financially gone from 2grand per week to 709 per month). But it's all part of life and giving up is not an option for me. This site has been brilliant and wether we want to moan and shout everybody is so supportive.
There just watching mine doesn’t really help knowing it’s sat there
Yes I was working now at moment I’ve applied for help but they are taking ages haven’t had any help since it happened 31 st July family been helping me
I’ve a mortgage to do I may now have to sell
I’ve always worked. Hard and kept a reasonably nice home . So it’s a bit of kick in the teeth with nothing coming in
I just think family and friends don’t understand it fully x
Universal credit ect useless. I had no choice had emergency operation 1st I knew about Annie, thought I had a brain tumour. They are talking about another operation, had scans 3 weeks ago and waiting to find out what they want to do. People on here say they sometimes say we can do this or just observe things. I have decided if I get a choice I will go for observation rather than operation ( I feel the risks are higher than I like) but at least u know what having a bleed feels like, which when it happens you are not greatly aware of what's going on. I'm not scared if any of it.
You make complete sence to me, I have a unruptured Acom Aneurysm. I had it coiled back in 2010, had many different problems since, the fear you are feeling Is normal it's not easy living with a time bomb and I know family and friends can be there for you, you are still very alone. I too have grand children and every day live with fear I might not see them grow, comfort can be found here where others understand what you are going through.
I understand you so much, I feel the same way. Have you spoken to you G.P? My GP gave me contact details for the mental health team. I had a very long wait 10 month for therapy... I'm not sure if it is helping me as most is unrelated to living with this aneurysm, it more to do with thinking differently it's called CBT. I have been to 3 session so far so I'll let you know how it goes. I don't think people understand the fear we have to live with. I have my grandkids over night and do get scared sometimes that something might happen, but I try to put it to the back of my mind and just try to enjoy the time I am getting. The hard part is no one I know personally has a aneurysm so I don't have any one to share all the crap that's going on inside my head, I have struggled trying to get back to the old me. I know now that isn't possible that is also very hard to take in. Tuesday I had a cerebral angiogram for a better look at my coiled aneurysm as it is still growing 4mm so far. I was given a choice to make open surgery or webbing. I really am stuck because I don't know what would be the best choice, I guess this is just some of the crap we have to live with. I really wish there was more support more places for people like us to meet and at least feel normal in a room full of people for a change.i wish you find some peace
In my case no, it still grew, everyone is different so it might not be like that for u, mined had be coiled 9 years ago. Was supposed to have it packed with more coils but my surgeon agreed with me that it had to be clipped, he knew I'd had enough of it all. Remember to ask questions. Best wishes to u
First option to coil stent once I have that it can’t be clipped due to the stent
The clip surgeon didn’t sound to convincing to me with the complexity of it they can’t say they can occlude it for sure so I’m going for another 2nd opinion to it at Cambridge
Yes second opinion would be good, they may have other options. Every aneurysm is different and we all have different individual needs. I wish u all the best 😊
I’m under John Radcliffe now as London was taking to long I’ve had a ct angiogram 2 weeks ago and I hated it I had a call this week to inform me Thy are having a meeting this week to discuss my case and how to treat it
My dads living with me and is on palliative care with me
I’m trying to remain calm it’s difficult
I am noticing I’m getting more and more eye pain behind either eyes more frequent
John Radcliffe are fantastic, they are specialists in this area so you are in good hands(my Dr is Dr fuschi). My Dr comes from there to Coventry once a week to treat people like us.
Good to know they are letting you know whats going on and at least after the multi discipline meeting you will know more, if its anything like me, after the meeting things move fairly steadily as to what is happening .
It sounds like you have more worry with your dad which must difficult.
No I don't get any pain behind my eyes, I reckon i'v been lucky in a way, I never had any symptoms before or after my treatment. My check up for my treated and untreated anueryms is in December so just hoping im going in the right direction.
Hi there, hows things with you? Have you got a plan of action from the Drs? I hope you were able to relax and enjoy Christmas.
I'm still waiting for results of my mri before Christmas so still hoping all is okay! Unfortunately been diagnosed with breast cancer now so not having a good time!!
At least they are investigating now which is good, sounds like they will be doing some kind of repair? I had the same issues because of the position of mine, clipping was out of question so they did endovascular.
Well I was a bit deflated I got to grips with being told it needed treating but am panicking now as he said it was in a challenging area anterior communicating artery
I was so fed up and anxiety had increased feeling like this thing which is 8mm now not the 6mm originally proper images has shown its true size I’m so worried this thing will take my life my son I think hers fed up of hearing about this thing he’s only 26 and I’m sure me getting depressed all the time with it makes him feel low to
He never says but I feel I’m such a mess and burden x
Oh dear I have every sympathy, both of mine are in the same place as yours, my 9mm was treated. If they offer endovascular repair go for it, it's all very scary I know but it's amazing what they can do. After the op you can go back to a normal life. Your son is probably just worried about how you are feeling as you are normally the strong one.
I think the Drs have to give the worst scenario, it's very scary I know. I'll add your number and msg/whatsapp you, like you say it will easier. My battery is just about to go so I'll msg you tomorrow
I had aneurysm surgery in August, 2019, when I had stenting, scaffolding and coiling done. The operation was 6 hours,
but regret the stent broke and it took them 2 hours to remove. Unfortunately, they couldn't do this but I am alive and now on Aspirin and Clopidogrel until my next operation next year when stenting will be done properly. Another angiogram will be done in the New Year.
I went through a rough period of 4 weeks in hospital and 2 in Respite, hallucinations and more. I am grateful to have come through all this and now look forward to having it fixed. I am also epileptic and change of medication was needed. This has been a tough time but all in all, I feel well.
I'm doing well now and its almost a year since surgery. I had an angiogram earlier this year. They told me the treatment appeared to be working and then they would arrange another MRI later in the year. I'm still on Aspirin and stopped Clopidogrel in June. I'm also on new epilepsy medication for the last 4 months which is taking some getting used to. Hope you are okay.
Did you have the 2nd operation ? Done ? And what’s the seizure med ? Are you having seizures ? Hey also my number is 07487 878888 if you want to what’s app to keep in touch I’m debating still and getting a further opinion they want to stent coil my 7.2 mm one
I was frightened to have the operation but am grateful for the NHS, the Neuro-Radiologist and the Neuro-Surgeon even though stent placement wasn't successful. No 2nd operation has been done at this stage and haven't heard anymore obviously due to COVID-19, but I'm not sure if another operation would be done if the treatment is working? I am sure the Neurologist or Neuro-Radiologist will be calling me in for a check up in due course. I am now on Lamictal (epilepsy meds) 150mg. daily and take Phenytoin 200mg. daily. Thank you for the number!
Hi Miley,I'm Donna.July 18th of 2019 I came home from work and started feeling really dizzy unlike any dizziness I had ever had before.I made
it to the kitchen bar and laid my head down but it didn't stop.I worked in the healthcare field for over 20 yrs and felt like it was a stroke.My legs went numb and I remember hitting the floor.When I came to I was still dizzy legs still numb arms numb but i could see my right hand.I started trying to move my fingers and kept praying Lord please help me.My husband came home from work in about an hour and found me.He called the ambulance and got me to the closest hospital where they found the aneurysm.The hospital shipped me straight to Atlanta Ga where I was immediately took into surgery.My Dr coiled the aneurysm and said that when he got to it that it had already sealed itself off but he coiled it anyway.I was on a vent feeding tube and all kinds of stuff for 2 weeks.During that 2 weeks fluid built up in my brain and they took me back into surgery and put in a shunt which went from my brain and came out the top of my head which had a pump attached to pump out the fluid.That worked for a while and they took it out but fluid built up again so back in surgery I went and this time they went in thru my spine and drew off the excess fluid.That worked and in 2 weeks they took me off the vent and woke me up but I had to learn how to swallow again walk again eat again so I was still in the hospital.On August 15th I finally got to come home.I have to wear a certain prescription lens in glasses now bc the stroke affected my eyes and I see double without the glasses.My neurologist said I couldn't go back to work and he helped me to get my SS Disability in 3 months and have recently been approved for medicaid.Ive got to go bk for a scan of my brain to make sure it hasn't changed and doesn't need more coiling.I cant lift over 5-10pounds,have to be careful with my blood pressure that it doesn't go too high.It is scary but we are still here for a reason only God knows why.Dont be sad and depressed.Enjoy your family and friends.We both could have died but our God had different plans for us.
I’m very anxious from the waiting game I’m so glad you are going well from surgery sometimes I feel like I wish I did not know about it like you and then it would all be over xx
I know your angry and that's ok. I just turned 54 and I had brain aneurysm clip surgery will be 3 years in November. Just make sure that they do watch it. If you aren't satisfied get a second opinion. I honestly had one of the best doctors. He told me I probably had a greater chance dying by going out on the road and getting hit by a car than dying of a aneurysm but with aneurysms you never know so we could do the surgery now or wait. So of course a couple weeks later I had the surgery. I don't know if you pray or believe in God but God is the only one who pulled me through. From the time I found out, through my surgery, recovery and then weeks later going back to work. I prayed hard and I had a lot of people praying and I will be praying for you. God bless.
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