Further Coiling Required and Absolutely Terrified

[Fern]

Hi All

I am so glad to have found this site. I have read lots of your posts and realise that there are others who have had to undergo further coiling and will be able to emphasis with my feelings.

I had a SAH in 2006 where a large aneurysm ruptured and was subsequently coiled. At the same time I also had a small unruptured aneurysm right next to this coiled at the same time. I had 7 coils placed in the ruptured aneurysm and 3 placed in the unruptured one.

I was very fortunate and have made a very good recovery and went back to work, on slightly reduced hours, a few months later.

I have been regularly monitored over the years and both coiled aneurysms remained completely occluded. However, at my last MRI scan there appeared to be some change. I was then sent for a angiogram to confirm what the change was. The angiogram showed that another 3mm aneurysm has grown in the small space between the 2 previously coiled ones.

I have met with my consultant and he gave me the option of doing nothing and having regular scans to monitor, but he was unable to tell me if this new aneurysm had grown slowly since my previous MRI taken 3 years ago or whether it had grown overnight at some point.

The other option he gave me was to have this aneurysm coiled too and this was what he recommended.

I have made the decision to go ahead with coiling as I'm not sure how I would be able to live my life with the uncertainty of whether or not it may burst at any time. The procedure is scheduled to go ahead mid February.

To be perfectly frank though I am absolutely petrified, as the consultant gave me statistics on percentages of "bad outcomes" and depending on where I research on the net I find information on statistically how risky this procedure is to other articles on the net that make it sound like a walk in the park!

Any support or others experiences would be very much appreciated.

[Daffodil]

Fern. I can't offer any experience in what you're going through but just a note to welcome you and tell you we will all support you as best we can.

I am sure in your position I would make exactly the same decision to have the coiling but it's natural to be worried especially as you've done so well over the last six years. Keep strong. You've come so far.

[donna79]

Hello Fern,

I am awaiting my scan for april this year and am scared they will find something because i had a remenant on my aneurysm x x So I understand a bit x x x

All I can say is like you x x x I wouldn't be able to live with the fact that it could burst at anytime (i am a massive worrier) and like you I would opt for treatment x x x I search the web many times to try and find answers of why and curse but what I have found is we are all different and so are all cases x x x

I am sure that there are people on here that have gone through what you are x x x

Big hugs to you hun and stay positive x x

lots luv

donna

we are all here for each other x x

[Winb143]

Fern,

It is scary but it's better they caught it before it popped isn't it ?

You are strong and I know you are scared, but to live with it must be scary also.

Good luck and as we say to kids when they fall over "Brave Soldier "

Be Well and you decide in your time xx

Whatever you decide Good Luck xx

from

One Brave Soldier to another xx

Let us know how you get on xx xx

Best Wishes

WinB143 xx

[kempse]

Hi Fern and a warm welcome to BTG.

I really do empathise with you, having experienced being absolutely petrified when I had to go back in to have more coils placed in the aneurysm that had ruptured. I also have a 3mm unruptured one which was discovered at the end of 2008 when the other one ruptured and it has been monitored annually since then. Mine appears to have remained the same size since it was discovered and I was told last October that I do not need scanning again until Aug 2015.

I am not a fan of statistics, I think they just cause unnecessary anxiety.

It is not an easy decision to have to make, but I think I would go on the guidance of your neurosurgeon. If you decided to have it monitored, I personally think you would possibly worry more, wondering if and how much it might change/grow between scans whereas the anxiety of waiting for a coiling procedure would be much less time wise and would take away the risk and worry of rupture.

I know I could be faced with a similar dilemma in the future and that possibility alone scares me. I have been told that mine is not suitable to be coiled but would have to be clipped and I think for me that is more terrifying than coiling.

Wishing you all the best in making this difficult decision.

Sarah

[Fern]

• 
  

Thank you all so very much for your replies and support. I have felt so very alone in my concerns as I don`t want to share my great concerns with family and friends. It is so comforting to know that other people have a real understanding of how I`m feeling at the moment.

I really do appreciate the words of support.

Fern

[DawnS]

Hi Fern,

I only had the one aneurysm so I don't have actual experience of how this feels. It's likely I was born with my aneurysm though and after my mum died of sah, I asked a couple of times to be checked. Each time, I was referred to an optician instead. The opticians were both as confused as I was by this. Anyway long story short, the aneurysm burst, I had a 3 week stay in John Radcliffe and coiling done. It frustrates me that I could have had the coiling without the sah and all it's effects.

Good luck!

Dawn x

[Gill C]

Fern step away from Google it is not your friend!!!

I googled like mad after my anni was clipped & scared myself stupid with statistics from American sites regarding mortality rates after clipping surgery!!

At my review after my op I was told I had a mirror image anni on the other side & that they wanted to clip it too. Like you I was devestated but was told I would only be in for a matter of days rather than weeks. My first anni didn't rupture so although I was clipped before that happened I would have more choice in the matter.

I'm with the others I think in that I don't think I could live with the worry of knowing there was an untreated anni there just ticking away. I know I would have had treatment on a second anni even though on closer inspection of my scans they decided there is no 2nd anni.

Remember we're here for you to talk through your fears whenever you need to. xxx

[Louise]

Sorry hun to hear your having to go through it again but better being safe eh!

Im with Sarah in: I am not a fan of statistics, I think they just cause unnecessary anxiety...

Yep all here for you...take care

[Bill B]

Hi Fern. I had a second coiling performed six years after my SAH. I, too, was terrified but , like you, the thought of leaving the anni untreated was just not an option that I could live with. The op was successful but left me with double vision and balance problems (third nerve palsy). I see this as small price to pay, for peace of mind ,that I will not explode again. Good luck Fern. Bill.x

[goldfish.girl]

Hi Fern,

I had 2 large (??) annies coiled at the time of my bleed. They found a 3rd during the operation and I was given the choice too of having it monitored or further surgery to coil it.

I asked the surgeon what he would do if my 3rd small anni was in his head and his response made my decision for me - he would have the coiling done, being fully aware of all the risks which he assured me were small in comparison to another bleed, even from the smaller annie.

I would not have coped well with the worry of another bleed & I have never looked back on this decision with anything but positive thoughts (scary as it was at the time). Coming round from the op and the feeling of relief that it was all over - and the threat deleted - was a huge relief after all the worry from finding out there was another wee blighter waiting to cause me another problem in the future. The op went so well that I asked to go home the next day and was allowed to do so - straight from HDU, no general care ward required

Good luck Fern xx

[Fern]

Thank you all for your support.

Gill you did make me laugh when you said Google is not my friend! I am indeed trying to step away from it, although I do get comfort from the sites who's statistics are in my favour I think I have resigned myself to the fact that I just have to "man up" (no offence intended to male users) and put it out my mind as best I can.

I would add though that although my consultant quoted some not great statistics to proceed with the surgery, when I asked him what advice he would give a member of his own family, he replied he would recommend the procedure to coil the new aneurysm without question.

Thanks again

Fern

[Olef]

Hi Fern,

My aneurysm burst December 2011 and was successfully coiled. I had just one but it is 16mm dia. I was off work for six months and I have been left with reduced vision and the usual kind of numbness / weakness problems. Because of the size the good neuro people had me back early for an angio and they found my coils had compacted considerably and that about half of my anny was empty again. I was offered recoiling. The prospect of a second coiling op and recovery within lees than a year was pretty scary and like you I came here for support and reassurance. Everyone here is so kind and they understand what you are going through!

I opted to go ahead because I didn't want to live with the risk of it bursting again and the second time around was a walk in the park. The op was completely successful and I was in hospital for just 36 hours. I had no ill effects other than normal post-op tiredness and I was back at work full time after two weeks off.

Six months has gone by now and in two days time I am having an MRA scan and the week after I am having another angio. I think the docs want to compare the two and hopefully after this it will be scans only. I guess there is a possibility I may need another op, I certainly hope not but if I do I would not hesitate to agree to it.

I hope my experiences are of interest to you and I wish you all the best!

Olef

Edited February 3, 2013 by Olef

[MaryB]

Hello all,

Silly question maybe but since I have not googled "annis" and coiling & read everything ever written about them because I did not have an anni and coiling. I Google other things and save them all in favorites to review over and over. Because I cannot always remember everything I read.

Is it easier to have coiling surgery with much less side effects/ affects (sorry have to look up which one is proper every time I use that word) than one burst and have surgery? I know surgery is always a risk but is it a lot better? GOD knows no one would want it to burst but I am ignorant on this subject. If you have surgery IF / before something happened is recovery much better or about the same? Or is it all depends on whom, where it is etc....? I understand them watching the size etc.

I think I understand that "watch it" anxiety as I have what they think is a non cancerous tumor slightly pushing into my cerebellum. That we are "watching" as well. Surgery freaks me out but it freaks me out if it grows and I loose function as well.

Thanks in advance for any insight you could give me or your own expeiences. maryb

Edited February 3, 2013 by MaryB

[Jane]

Hi Fern,

I know exactly how you are feeling and I sympathise. I had an SAH in January 2012. The scans showed I also had a small unruptured aneurysm. Some months later they offered to coil it and gave me all the scary statistics. I decided to have it done so that I wouldn't have to keep on worrying about it. My husband pointed out that if I didn't have it coiled I could end up having another SAH several years later and would then be having to recover from the effects of the bleed when much older than last time.

I had it coiled just before Christmas and I am so glad I did. I felt so happy and relieved when I came to afterwards. As the doctor said when she woke me up "There, you can put it all behind you and get on with life now".

I suppose they do have to give you the statistics but it does make it scary.

I felt fine afterwards, just a bit tired, but nothing like recovering from the SAH.

Wishing you all the best.

Jane

[Fern]

Thank you very much for sharing your experiences. I really do appreciate it.

It really helps when people truly understand what we go through.

Fern