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6 weeks ago,i went very whoozy deep in my head and felt like I was going to collapse.I vomited and felt anxious and agitated afterwards I fumbled on but went to see my family doctor 2 weeks later ,who said I should have gone to a and e straightaway as I may have had a small stroke.He sent me to see a neurologist and I had a MRI followed by a CTA.He casually told me I had a 5mm aneurysm and one that was so tiny it was untreatable.I was referred to a neurosurgeon who I saw 10 days ago.He said I have a 7mm aneurysm above my right eye and one midline on my forehead.He also said that they may not be suitable for coiling and may need clipping ,which once done,although more traumatic ,tended to be more final.He said he was sending my CTA to the neurologist to see if he could 'rejig' it as it lacked clarity.He came back to me a few days later to say I could have the larger of the 2 coiled but they were not keen on doing ths smaller one as it was more distal.He said if I opted for clipping he wold try and clip the smaller one as well if he could access it but would not proceed if he felt it was too dangerous.I now feel in a dilemma ,in that I really do not want to undergo a craniotomy if it turns out he can only clip the larger one (as I could have it coiled).He has scheduled me for a cerebral angiogram on Friday and I really hope he can give me a better idea from this as to whether he can access the smaller one.If not I am hoping there are other options as I am an older mum and do not want to walk around with the 'ticking timebomb'.What started as a small problem with my brain(quote the neurologist),seems to be getting worse each week.I have been working up to now but am feeling so stressed I feel I'm going to have to go off sick as I am a crisis worker and am struggling to deal with other peoples issues at present. In some ways I feel blessed ,as my gp says im very lucky they have been found.However in some respects if the small one is inaccessible ,I will wish I had never gone in the first place and carried on enjoying my life in oblivion.My partner is annoyed and as I am a nurse he feels I should stop 'jumping the gun' and wait for my angiogram before I start panicking. .Thank you for listening .There seems to be very little support in the uk.

By the way the 'tiny' one is 5mm and bigger than my neurologist suggested.

You are one lucky girl, you could have had a rupture, so take long deep breaths and try to relax. We have all been through this in one fashion or another and good outcomes are the norm for un-ruptured aneurysm. My huge R-ICA bulged and I lost use of right eye, but after having aneurysm fixed I finally have use of it back. Do give yourself time to digest it all.

Your Doctors will learn definite size and placements, etc with Angiogram and they can them suggest good procedures for you Take the time to read here and develop questions to ask your Neuro-surgeon.My second Aneurysm was also 5mm and I took time off for trip south to enjoy the warm temps and had it finally fixed a year later with a Pipeline Embolization Device. Believe it, Many things are possible.

Again I can't stress enough to learn all you can of your condition and think relaxing thoughts. Seek the support of your family and do Keep in touch here for help. Starbirder

Boozy,

The most important thing is the surgeon’s skill. If you have a good one, with a stellar history you are safe to trust his judgement. I was not keen to have my aneurysm coiled and stented, because I not only worried about the surgery, but I was not walking due to severe pain. I delayed for a year and in my case for various reasons it was a good decision, but that said, I was not without worry during that year. Ugh. You just have to tell yourself over and over, this is what is and this is what I have to face, how can I best get through it. Finding this support group is a great beginning. You won’t be alone in your journey.

Here I am 6 months after the surgery, my stent is completely covered in endothelial cells and the aneurysm is almost occluded with no compaction of the coils. I will have another angio in 1 year. Is it perfect, no, but it’s better than a rupture. I try to believe the aneurysm was found to save my life, not to make me go crazy thinking about it.

Update us as you get more information.

Best,
Elle

Thank you both- I try not to self- pity but already have a very rare neuromuscular condition but am lucky in that I ain’t disabled as some are and after a bumpy start have led a relatively normal life- surgeons and medical facilities in the abates are marketed well and I feel you have more choice. My surgeon works at one of the top neurological centres in the north of England and has a special interest in aneurysms/ clipping.He says himself that in the UK 80% of the population have coiling as it’s less invasive, less risk etc. I’m.not so much worried about the treatment but worried about an untreatable aneurysm. I do think I need to sit back and wait for angiogram- things could change again and may not be so bad- thank yousomuch for your responses ccc

I took a supplement for artery and vein support called olive leaf extract for the last months while waiting. My aneurysm was 8mm in March 2015, in Jan 2016 it measured 7.3mm. I was surprised by the change. Was the change in size due to the supplement? I don’t know, but taking it made me feel proactive. You might want to investigate/research vein health/support. As a nurse you probably know this, but just to remind others, if you decide to take supplements, check for interactions between them and drugs.

Boozysuzi, sometimes we as crisis workers have to practice what we preach lol! So what would you tell a patient in your situation? I’m going to take a leap and say wait for the angiogram. Is it a blessing or a curse to know more about medical procedures than the lay person? I ruptured as an ignorant social worker and still had to practice what I taught, yikes!

I wouldn’t say a country has better health care than others. All have positive and negatives. I live in the States but my medical care is controlled by the insurance company. If I go to someone out of network I pay more, just about everything has to be pre approved and if I don’t like one doc I have to explain why I want another. I’m guessing everyone has different criteria here in the States.

Also you may want to ask UK specific questions in that group. Martin really knows the ins and outs. But everyone world wide can chime in on their experiences. Good luck and remember to breathe!

Thank you and yes you’re right - being a health care professional socks sometimes. I’ll look.into the olive leaf extract certainly.I know the usa health system has its issues- thought only have to look at gofundme pages but you seem to have so many good doctors recommended- I feel quite comfortable with my surgeon - brain surgery is unique in that the patient is empowered to take the decisions- usually they tell you what’s wrong and what they’re going to do

I’m struggling to find where I can post on the UK group- is this because I’m.using my phone rather than a computer?

Hi B, Firstly welcome to the UK site, you will find some good information here and receive some good feedback from the site.

The first thing that you need to do is CHILL! I know this sounds daft, but trust me it is the best way forward!

Wait for the results of the Angiogram and then you will have all the facts on the table and then you can consider the way forward based on facts!

Consider my story for a moment, I have 5 of these vile things, 2 of them have been coiled and stented over the last 2 years, One was in the Opthalmic region, just like yours and the other was in the basilar region.

The procedures in both instances, was a piece of cake, you go in, they do their job and you wake up, JOB DONE! No pain, no after effects, for me it was as simple as that!

I have 3 remaining that require open surgery and the range from 6mm to 10mm, I have decided that nobody is going to cut 2 holes in my head, as that is what would be needed to fix these 3, no matter how good they are at their profession.

That is my decision and I have learnt to live with them, I will rather wait for new developments in Endovascular surgery (Coiling, Stents etc). I have scans every 8 months or so and over the last 3 years, they have not grown, so I am leaving well alone.

I have no headaches or other symptoms from any of these and never have had, but if they cut two holes in my head, i will have headaches, big bloody headaches, so in my personal case, my decision is to leave them and monitor them by scans every 8 months or so!

Do not be anxious about the angiogram either, as it is a simple easy procedure with no pain at all!

I attach for your attention a copy of the the biggest study conducted on unruptured aneurysms, this study is used by Neuro specialists worldwide today when considering risks involved in treating these things.

The study has sub sections, so open the sub sections and you will have all the information that you need.

One final word, try to relax, worrying does not help, it increases blood pressure and that is not good, get the results of the Angiogram and then look at the options offered to you, you will see in the study that aneurysms below 5mm are considered low risk, so bear this in mind.

Also location is important, so get the specialist to explain to you the risks associated with the 5mm one and his advice on treating the Opthalmic one by coiling and monitoring the second one with periodic scans.

Now CHILL!

If you have any questions at all or need further input from me, do not hesitate to contact me.

Cheers for now.

Martinc

2-nejm199812103392401.pdf (183 KB)



boozysuzi100 said:

I'm struggling to find where I can post on the UK group- is this because I'm.using my phone rather than a computer?

Not sure about the phone issue, but see my post to you on the UK site!

MartinC said:



boozysuzi100 said:

I'm struggling to find where I can post on the UK group- is this because I'm.using my phone rather than a computer?

Thanks martin - you have made me feel so much better! I found the ct angiogram a doddle and was not particularly worried until I saw some comments re the femoral one- I’ve had. Lumbar punctures in the past as I unfortunately. have an existing rare neurological condition.Im taking the attitude that if I can put up with them I can put up with anything - sometimes you think that maybe if they h

Hi B, Your post ran out, so I cannot see the full text of your message, please send again on your pc.

Cheers

martinc

I can’t as am working nights( I’m a nurse)- not sure where it went- was gonna say sometimes if they can’t do much, you wonder if it would have been better to not know. Luckily I have a good blood pressure despite my current stress and have also switched from.very strong coffee to decaff which I hope helps- my surgeon has said that if they can’t get it, it may not grow- my close friend had a SA and is very lucky to be alive and I think that is always at the back of my.mind.

Boozysuzie, femoral angiograms - I’ve had many and only one issue but my Doctor got the student out of the way and addressed the bleed immediately. It actually takes longer to type what happened then it happened. It was sore but only an inconvenience.

What do you do to relax? How about this - try doing one thing for just you each and every day, then try doing one thing for your partner. Don’t forget to exercise, a walk where you can converse with your partner and solve world issues might be nice. And if you don’t know how, learn relaxation breathing

A lot of our members are in the States so that’s why you see so many U.S. doctors, but there’s many great doctors throughout the world. I was lucky in that I ended up with a Dr whom I have complete faith in and I didn’t get to “shop around”. And never discount the nurses (lol) I believe they are a major reason I’m still here. Perhaps you can talk to some Neuro ICU nurses and find out who they would try to get. Here in the States, a professional isn’t supposed to recommend one over the other, but if you ask who they would go to given the opportunity, you’re asking personal opinion and that is allowed :slight_smile:

Thanks - I’m a big Walker and have reached a sort of acceptance really - I know why now the neurosurgeon gave me time for it all to sink.in- I have some private healthier in.the UK and have the option.of going through the nhs and being admitted to a neuro unit but it could take months- if I go private my neurosurgeon has assured me that a specialist team will be assembled to take good care of me which will take a couple of weeks - I did have concerns about being treated in a ’ general’ hospital privately rather than a specialist unit initially but do feel a bit better- if I go fir elective clipping the surgeon said recovery is more predictable than in an emergency- also the private hospital is a 2 minute drive from the nhs neuro unit.To be honest I am just going to wait and see what the outcome of my angiogram is- you never know it may turn out that are both coilable or both coilable - I feel far less stressed today and realise that although serious there are those worse off( I have 2 dear friends with terminal cancer)I am normally very chilled by nature so this anxiety has been new to me -I think I’ve developed an awareness of how disabling it can be and feel sure on a positive note I will be more empathetic to my patients

Boozysuzi, sometimes life gives us good lessons! I’m so happy for you that you have a positive attitude. My second coiling was really not a big deal, one night stay in Neuro ICU compared to the 28 days from the rupture. Terminal cancer sucks. I hope you are able to spend time with your friends, laughter and hugs are great ways to build memories we can cherish forever.

Keep us posted, remember to breathe, and give lots of hugs - they really do increase our endorphins!

Well I had my angio-wasn’t pleasant but bearable and not too bad- funnily enough I found the staggered 100ml injections of dye worse than the puncture and local.
The aneurysm that was initially felt difficult to treat is apparently a great candidate for coiling- the other isn’t and the doc talked about using some type of mesh but was worried that the risk of stroke was too high because of lication- he is going to liase with the neurosurgeon and says he will ring.me over the weekend but not to stress out as they will try to sort it one way or another.would much rather have gone for less invasive coiling but am of the minds set that if they clip.one they might as well clip.the other to avoid 2 procedures- I suppose the other alternative is to have the coiling, monitor the other and hope there is a new intervention developed.

Hi B.Well one step taken and now you are wiser! Did you read the study that I sent you? there in a mass of information contained there in.

I suspect that the specialist will suggest coiling of the one that they can coil and conservative management of the other 5mm one, in other words periodic scans every year.

They will also take into consideration the location of that one and consider the risks of it popping, using info from the Study that I sent to you.

Try to chill, you are wiser now and information will give you more confidence in managing these vile things.

Keep us up to date with their recommendations and proposed action!

Cheers for now!

Martinc

boozysuzi100 said:

Well I had my angio-wasn't pleasant but bearable and not too bad- funnily enough I found the staggered 100ml injections of dye worse than the puncture and local.
The aneurysm that was initially felt difficult to treat is apparently a great candidate for coiling- the other isn't and the doc talked about using some type of mesh but was worried that the risk of stroke was too high because of lication- he is going to liase with the neurosurgeon and says he will ring.me over the weekend but not to stress out as they will try to sort it one way or another.would much rather have gone for less invasive coiling but am of the minds set that if they clip.one they might as well clip.the other to avoid 2 procedures- I suppose the other alternative is to have the coiling, monitor the other and hope there is a new intervention developed.