Unruptured aneurysm

[ducky9]

Hello I have an unruptured brain aneurysm which two years after its incidental finding on an mri scan is proving to be the bain of my life. Long story short the aneurysm is compressing on my 4th and 6th cranial nerves so I've got horrendous double vision. Despite this the specialists im under cannot stent/cap or coil the aneurysm as further complications have arisen since a ct angiogram showed a further problematic blood vessel effectively being in the way. As my aneurysm apparently isn't life threatening the neuro team whilst fully understanding are left with no solution. The opthamologist team im under to try and help with my visual problems can only offer me to occlude one eye by wearing a patch (tried prisms but I'm off the scale) I'm only 43...i can't work,can't drive, I live alone so I feel like my world's crashed around me, im severely depressed and im totally at a loss as to where I go from here. Could anyone anywhere offer any advice...thankyou for reading

[malalatete]

Hi there. I too have an unruptured aneurysm - mine is a carotid/opthalmic artery aneurysm - discovered incidentally last Feb. Mine is (?) Possibly asymptomatic although I have other neuro conditions so it is difficult to be sure. I have a 1:4 chance of rupture so although not immediately life threatening have been offered surgical options, none of which are great because of its morphology and location (basically I will lose the sight in my left eye and there are risks to my speech centre).

Which team are you under? Have you been able to get a 2nd opinion? The advice I have had from my team has changed every time as they have discovered more about the aneurysm. Although my surgeon initially said surgery was not an option he would pursue (because of the risks above) following the neuroangio and a better understanding of its form in September it is now on the table and I have been sent away until the New Year to consider and make a choice.

It may be in your case that the size means that the risks of surgery far outweigh the risks to letting it lie, in which case you have been given best advice. I am surprised that the endovascular route is not still an option though, unless, as in my case, a stent would compound rather than resolve the problem.

I can't help with the double vision - something I only suffer with during a migraine when my solution is to lie down and sleep until it goes away, not an option for you, clearly.

[GT500]

Hi,

I've got an unruptured aneurysm as well, it's swollen a 2mm artery upto about 20mm.

It's the main artery that supplies the right eye, I had it coiled in Dec 2012 in a 6 hour op that had complications. The short of it was that it would have burst ( guaranteed ) so the op was a life saver.

Nothing even begins to prepare you for the surprise of what's happening.

I now live in constant pain, any activity that raises the heart beat or blood pressure results in instant sharp burning pain that stops you in your tracks, you're literally waiting for the aneurysm burst, that thunderclap pain, your last fleeting thoughts and then the bitter end.

Life has become very difficult.

I was 39 when I had my op.

I can completely relate to your issues, admittedly our symptoms differ but the impact is still the same.

I was dealt with by some great people in the Walton centre, Liverpool.

I cannot speak highly enough about them.

[urzelina in reply to GT500]

Dear GT500,

I'm new to this site and have only just started cruising through everyone's thoughts and postings.

Your comment about "being in constant pain .... and waiting for the thunderclap ..." seriously hit home.

I've had 7 unruptured aneurysms clipped after 3 craniotomies, that was about 7 yrs ago now. Yet, even now, on a daily basis I have fluctuating pain, that spikes at the unspeakable point (stopping me literally in my tracks) to the usual humming away 2-4 background "white noise" kind of pain.

2 of the 7 aneurysms have a problem. The clip has shifted on one of them creating a small balloon beneath, on the unprotected side of the clip. The second above the brainstem, is the dilation of the artery on a 360' on the outer of that clip. It's not worth going into, but I also have osteonecrosis of the skull.

What prompted me to look at this site was I've just been told I have NTG glaucoma. There's also a whole lot of non-neuro stuff going on too.

I'm so tired of having to be resilient, so fed up of "dealing with it alone". It's so good to hear someone voice the same feelings about the same escalation of pain under the same circumstances.

Hope this finds you on better form 7 months later.

Urzelina

[GT500 in reply to urzelina]

Hi Urzelina,

It looks like we live in the same world, fun isn't it !

It's no surprise that your tired of it all, hell, I've had enough of it all after 1 aneurysm, so after your plethora of them I'd be fuming.

It's so hard to try and stay positive about it but that's what we humans do well, persevere.

Stay strong, you're not alone, there's 2 of us.

[Braingirl in reply to GT500]

Now there are three of us

💓

[tillymint16 in reply to GT500]

Hi GT500

Apologies but I’ve just seen your post and sympathise with your condition that causes so much stress. I’m wondering how you are recently.

Mine isn’t not the same as yours and hopefully is to be coiled at the end of April this year. I’m filled with dread and attempting to find a way around the stress but I’m also under Walton Neuro. You’ve given me some reassurance about your treatment there as I’m terrified of even the hospital environment let alone the surgery. I’m under Mani Putheran. Who was your surgeon?

Regards Andrea

[GT500 in reply to tillymint16]

Hi Andrea,

I was under the expert hands of the great Mani putheran too. He's a really nice guy, he spent time with me to explain things and gave me reassurance on the procedure. I can't speak highly enough of this man. In all fairness all the ward staff were great during recovery.

Although it was a scary event, the feeling of true care afterwards was lovely.

[tillymint16 in reply to GT500]

Thank you so much for this reply I was hoping you’d been under his care He seems lovely.. I’d worked my way up and down the UK trying to find someone who I got a gut feeling about and this guy had it! I’m still dreading my op and sooooo scared of hospitals but sure there can be a sedative awaiting for my arrival to help me through.

Hope you are doing a bit better these days👍🏻And thank once again for your reply

[ducky9 in reply to tillymint16]

Good luck with your procedure tillymint16. Try not to worry...these things are never quite as bad as we think they are going to be. Sounds like your in great hands with the consulant you have in place.

Kind regards

Ducky9

[GT500 in reply to tillymint16]

I was scheduled to have my op on 20/12/2012 but when the morning came I was feeling so alone and completely terrified I really didn't want the op, I told a nurse that I was really sorry but I don't want to go through with the procedure, she said that it was my choice and that someone would come and see me, about an hour later Mr Putheran came to see me and explained that an emergency had come in and my op was put back until the next day. I told him how I was feeling and my concerns, he then spent the next hour or so sat on my bed and talked to me like a friend, he explaining everything, he drew pictures so that I could grasp the technical bits and talked me through every eventuality, both good and bad. By the end of talking to him I had gone from a blubbering wreck to someone who had calmly accepted the facts and realised the op was a far more beneficial thing than I had realised. Like I said before, Manni is without doubt why I'm here now enjoying life and helping you, he IS the man for the job. His skill with operational procedure and personal charisma is second to no-one. I know it's very hard but look at the benefits not the down sides.

[tillymint16 in reply to GT500]

It’s so strange you should give this senario!!!! As tonight I’ve realised that I’m quite down about it all and it’s the stress and dread weighing me down... I’m almost at the point you were of cancelling!!!! You have helped me a great deal though today relaying your experience with this wonderful surgeon.. I needed to hear about your thoughts on him and the dreaded op.

He’s strongly advised me to have the coiling and seeing as I’ve seen 2 close people, one being my Mum have fatal ones.., I’m left with no other sensible option. I called Headway the other day and they’ve given me a persons name who supports people with head injuries, their families but also people with related issues and she’s so kindly agreed to actually meet me in Walton to have a coffee and chat even perhaps go up to the ward... I’ll have wobbly legs but I guess it’s a way of taking control over what happens...

thanks so much 👍🏻You have made a real difference more than you know and I will try my best to concentrate on positive outcomes instead of worst senarios.

Best Regards xx

Andrea

[ducky9]

Good morning...Thanks for your replies. One of the hardest things about all of this is the lack of knowledge/support out there and the fact that I know no one who has had this or can relate to how I'm feeling. So finding this site and getting those replies is a welcome right now. I've completely shut everyone out and become such a miserable bad tempered woman as I'm stuck with so much anger and pain and frustration. My ann isn't posing any risk to my health (I kind of hoped it was at one stage. .least then I would be free...not helpful or positive I know) it just sits there causing the odd migraine and constant visual problems. I was an air hostess...Lots of friends...busy social life. I'm now a recluse in my own home as I can't get by with my vision loss, even walking my dog is difficult. I miss my life but I miss the little things too...just nipping to the shops...or just watching a movie. I will have to wear an eye patch for the rest of my life...This in itself is a hard cross to bear for me. Sorry to go on and on...im kind of hoping to make some contacts on here, find out about local support groups, something anything to try and help me focus on getting some positive steps ahead as I've pushed most of my friends and family away with my negativity. My gp just offers me anti depresses every time I go there which I've tried with little success. Thankyou for reading and best wishes to all suffering

[Judithba in reply to ducky9]

Good morning. I don't think that you are negative at all. You are just struggling to adapt and accept the change in you and your circumstances. I understand this well. Almost a year ago I had a massive sah and the consultant told my family that I only had a 20% chance of living. I will cut my story short but when I eventually was allowed home I virtually became a little reclusive. This was because it was the easy option for me and I felt safe at home. The turning point came for me when I contacted Headway. I cannot recommend them enough. Why don't you give them a call? 

All we need is a bit of support and understanding from someone who knows what we are talking about! Plus it's good to talk! I'm hoping that you are as lucky as me because things really do get better, it just takes time. 

Be kind to yourself xx

[ducky9]

P's. Sorry I didn't answer the questions. I'm under a neuro team at salford. I cannot have the aneurysm capped by crainology as it's outside the brain. I was considered for coiling but after my angiogram a few weeks ago they have now found a smaller blood vessel feeding into the aneurysm so they can do now a coiling with stent. However they are concerned about the risks of doing this and at the end of it all have advised my vision will not improve...just not degrade further. Do I go for two endo vascular procedures and all the risks...knowing at the end my main symtoms won't go away as I only want the procedures done if I know I'll get my double vision removed or at best improved. I too am sitting it out till the new year to make my decision but I'm gearing towards just accepting my vision has gone and embracing being a patch wearer and leaving "Ann" well alone. Kind regards

[Gaia_rising]

Hello, Ducky, and welcome aboard.

I had a ruptured anterior communicating artery aneurysm in February this year, and, while they were rooting about in my grey matter, they found another two. They're asymptomatic, and relatively small, one is operable, the other isn't. The superior cerebellar aneurysm will be coiled in the Spring of next year, electively, I was given the option of conservative management, or surgery, and I'm going with the surgery, because, after the first one ruptured, just knowing that the other two are in there is impacting on me day to day.

That probably doesn't make a whole lot of sense, given that the choroidal one is inoperable, and probably presents more risk to my general functional ability, but I'm physically sick of the constant anxiety about every headache, episode of vertigo, and facial tic being the cerebellar one flaring up to pop.

I have a gallows humour about the whole thing, it's the only thing keeping me upright at the moment, apart from being a tenacious bitch. I'm 38, and haven't had a migraine since the big one blew. Whoop.

[rmarchioni in reply to Gaia_rising]

I love you sense of humor.

[Braingirl in reply to Gaia_rising]

We could be friends

I have an extra helmet !!!

My brain is totally screwwed up

Thanks Dr Xxxxx

But Cleveland Clinic has no medical reason that I should have any motor function at all considering the cognitive areas damaged

But damnit I'm here and am a stubborn little bitch that doesn't give in

To all

Hang in there

[Gaia_rising in reply to Braingirl]

Here's to all of us stubborn ones...

[ducky9]

Gaia gosh I fully sympathise...and I understand using humour...I did that a lot last year, I was very upbeat as some said, I used humour as my shield I suppose. This last few months the humours run thin, I suppose that's more because I'm getting tired of putting on a brave face now. I sincerely wish you all the best for your next op, try not to worry..stress and worry aggravate the situation I find. Good luck

[Gaia_rising in reply to ducky9]

It does wear thin, Ducky, some days I feel like I'm hanging on by my fingernails, then I remember that I must have more sense than that COW at work who pays money to have her ridiculous talons painted a different colour every week... to each their own, I suppose, but I don't ask her to take the lid off the coffee for me, I only had a brain haemorrhage, she has stupid fingernails that mean she sometimes can't hold a pen, poor thing.

I'm not worrying, that's one thing I know I can't expend energy on, I'm attuned to my body, and how it works (or sometimes doesn't), constantly watchful for signs that the remaining two head-guests are up to mischief, but just working that into my daily routine, morning top-to-toe analysis of 'is this OK?' is normal for me now.

We battle on, it's what we do. On that note, having just moved some cardboard boxes that the husband (who hasn't had a brain injury, and doesn't have arthritis, or Raynaud's) said he would move three weeks ago, I've noticed that the bottom drawer needs fixing. 7.45am is probably a bit early for the hammer, isn't it?

[ducky9]

Head guests!! I've always called mine the "squatter upstairs" it does take people aback (specially the ones who dont know what I'm going on about) made me chuckle that. Is it wrong that I've given "it" a name? I named my bunion years ago so it only seemed right this unwelcome attachment got a name too. I'm sure people think I'm cuckoo! The positive side of the aneurysm means I now have an excuse for being a bit cuckoo I suppose! Have a great weekend Gaia

[rmarchioni]

Change doctors. I had a ruptured aneurysm and Dr. Edward Sander Connolly saved my life. Google his address. Good Luck.

[Braingirl]

I feel your pain

In 2011 they found two wide neck aneurysms at my MCA Trifurcation

Coiling and stenting was done endovascular

Second was to be repaired in six months

But surgery was pushed up and done at 3months

That's where it all went sideways

They over manipulated the guide wire it broke and stent deployed sending pieces up as far as my frontal lobe they left the brojenb guidewire in my brain

So no MRI MRAs can be done to monitor it

They Drs were not honest told my family all was going well they were working on the second aneurym

It was taking too long so my husband went through the surgery doors to be told I was in recovery there was a lot of commotion in the operating room

There I was still on the OR table having a Grand Mal seizure

I spent months at Cleveland Clinic learning to walk eat talk all over again

I live in pain everyday

Which is leafing to other issues

The blood thinner is killing my right kidney

Be strong

Everyday is a gift💓

[spideyman]

Initially I had 3 brain haemorrhages and I was found to have a cluster of a aneurysms.

I had them removed by STEREOTACTIC RADIOTHERAPY .This was pin point radiation.

I don’t know if they still do it in this country but it might be worth enquiring about