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Extra/top-up coiling - any help or re-assurance please


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Hi All,

I don't post hardly at all but read lots and this is such a helpful place, I wonder if anyone can help me?

Brief rundown, I had an SAH burst on 4th December last year and had it coiled. I had six months off work and have been back full time at work for the last couple of months now. I have lost some of my sight and some sensation, get the usual headaches and tiredness etc etc and am a bit less steady on my feet than I used to be but all in all I am recovering pretty well and am even driving again (after the usual faffing about with DVLA). As most of us I am just glad to be still here!

A while ago I had a follow up angiogram which showed the coils in my aneurysm (which was 16mm in size) have settled a fair bit and almost half of the aneurysm was empty again. I was given the option to have a pre-emptive op to add extra coils to fill up the aneurysm again and I decided to go on the waiting list. I was told it would be November / December 2012 before I would be called in.

Imagine my surprise when my wife took a call from the hospital this morning advising I will be in for the recoiling in less than two weeks time.

I'm a bit shell-shocked at the moment and trying to take it all in, and I know next to nothing about having additional coils other than I think it is only a couple of days in hospital and a much quicker recovery. Can anyone offer me any insight in to the procedure and the recovery time etc for this, or indeed any reassurance.

Any info / help would be deeply appreciated!

Thanks and Regards,

Olef

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Hi Olef and welcome

I've not had to have any recoiling myself but I think the procedure is pretty much the same as the initial coiling (please someone correct me if I'm wrong). The risks are pretty much the same as they would have been with your initial coiling too. I know, personally, that I would definitely have recoiling if it were needed. I'd rather have prevention than cure. Talk your worries over with your consultant/neurosurgeon - I'm sure they'd put your mind at ease.

Take care

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Hi Olef,

I can well understand that you're feeling pretty nervous, as I would be the same.

I've got a neck left on my coiled aneurysm for which I've been monitored for since 2005 - next scan is due in 2015. I will also elect to have a pre-emptive operation if needed, as the thought of having a ticking time bomb in my head once again is just too hard to bear.

As far as I'm aware, the coiling procedure is exactly the same, without the added complication of the SAH. There are a few people on this site that have had an aneurysm topped up or an aneurysm coiled that hasn't ruptured, so hopefully they'll chip in.

My Mother-in-law also had coiling carried out on an unruptured aneurysm and apart from getting over the general anaesthetic etc she was pretty good after it.

Wishing you the very best of luck and hope that you'll let us know how you get on.

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Hi Olef

I'm one of those who had extra coils put in. Likewise following an angiogram, they discovered the coils had settled and they wanted to add some more to further reduce the risk of blood entering the aneurysm and therefore reduce the risk of any possible further rupture. I was worried sick when I got the letter telling me this. I received the letter in April 2009, five months after my sah and it suggested I have the treatment in the next 4-6 weeks. I did not actually have the op until October 09. The reason was due to the operation being cancelled twice and although I got myself in a state for most of those six months, it was actually a lot better than the first one. I had the op on the Wednesday and was out on the Friday, feeling fine. Despite feeling well, I did take a couple of months off work after the second op as I didn't want to risk any set backs.

As is standard practice, they informed me of the risks of the op but did say it would be easier for them this time as they didn't have the leaked blood to contend with whilst operating. The relief afterwards was immense and knowing that it would pose less of a risk bursting in the future made it all seem very worthwhile. Unfortunately I do have another aneurysm with a wide neck which they are monitoring annually and I am currently awaiting the results of a recent MRI, so I can't say I'm completely free of the worry yet, but I certainly wouldn't hesitate to have that one coiled if they deemed it necessary.

I wish you all the best,

Sarah

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Hi Olef

As Sarah has said, I went back for a second three months after the SAH, although mine was to coil a 3rd anuerysm (not for a re-coiling of the original two) that they hadn't been able to coil during the emergency op. I was told of the risks involved and asked the surgeon who was going to perform the op what choice he would make in my shoes. He was very definite that he would have the operation.

Everything went well & waking up from the elective surgery was nothing like coming round from the op after the bleed. I felt like a fraud being in the High Dependency Ward after it as I felt so well! I asked to go home the following morning (they wanted me to stay in for 48 hours) and it was agreed that I was well enough to go home.

It is an incredibly scary situation to be in and I was terrified but I will never forget the feeling of relief after the operation was over.

Good luck!

Michelle x

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Hi Olef and welcome

I've not had to have any recoiling myself but I think the procedure is pretty much the same as the initial coiling (please someone correct me if I'm wrong). The risks are pretty much the same as they would have been with your initial coiling too. I know, personally, that I would definitely have recoiling if it were needed. I'd rather have prevention than cure. Talk your worries over with your consultant/neurosurgeon - I'm sure they'd put your mind at ease.

Take care

Thank you Sami, I too feel prevention is far better than waiting for another bleed. I just got a bit rattled at being called in on short notice although I am not complaining at all, it will be good to get it over and done with and not have the knowledge that I have a half empty aneurysm at large in my head!

Take care,

Olef

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Hi Olef,

I can well understand that you're feeling pretty nervous, as I would be the same.

I've got a neck left on my coiled aneurysm for which I've been monitored for since 2005 - next scan is due in 2015. I will also elect to have a pre-emptive operation if needed, as the thought of having a ticking time bomb in my head once again is just too hard to bear.

As far as I'm aware, the coiling procedure is exactly the same, without the added complication of the SAH. There are a few people on this site that have had an aneurysm topped up or an aneurysm coiled that hasn't ruptured, so hopefully they'll chip in.

My Mother-in-law also had coiling carried out on an unruptured aneurysm and apart from getting over the general anaesthetic etc she was pretty good after it.

Wishing you the very best of luck and hope that you'll let us know how you get on.

Thank you so much Karen. I guess I am just looking for that reassurance that the second coiling will not be anything like the first really. My own common sense tells me that all the problems I had were due to the bleed, not the coiling. I had three weeks in hospital with a week in ICU and a week in HDU and when I came home I had to walk with a frame and I could barely see. An hour out of bed exhausted me back then. I really do not want to go back there!

Thanks for the good wishes and I am glad your own anny is under control and being monitored. I will come back and post how I get on in the hope it may help someone else down the road.

Best regards,

Olef

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As others say..speak to those in the know...I am sure all will be okay.....Good Luck and let us know how you get on x

Best of Luck

WinB143 ..welcome to BTG x

Thanks Win, you have no idea how much I appreciate your kind words!

Take care,

Olef

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Hi Olef

I'm one of those who had extra coils put in. Likewise following an angiogram, they discovered the coils had settled and they wanted to add some more to further reduce the risk of blood entering the aneurysm and therefore reduce the risk of any possible further rupture. I was worried sick when I got the letter telling me this. I received the letter in April 2009, five months after my sah and it suggested I have the treatment in the next 4-6 weeks. I did not actually have the op until October 09. The reason was due to the operation being cancelled twice and although I got myself in a state for most of those six months, it was actually a lot better than the first one. I had the op on the Wednesday and was out on the Friday, feeling fine. Despite feeling well, I did take a couple of months off work after the second op as I didn't want to risk any set backs.

As is standard practice, they informed me of the risks of the op but did say it would be easier for them this time as they didn't have the leaked blood to contend with whilst operating. The relief afterwards was immense and knowing that it would pose less of a risk bursting in the future made it all seem very worthwhile. Unfortunately I do have another aneurysm with a wide neck which they are monitoring annually and I am currently awaiting the results of a recent MRI, so I can't say I'm completely free of the worry yet, but I certainly wouldn't hesitate to have that one coiled if they deemed it necessary.

I wish you all the best,

Sarah

Having the op cancelled twice must have been terribly frustrating for you, I am glad you got sorted in the end. It is a shame that you have another aneurysm to cope with but remember you are far better that the rest of the population in that respect - your anny is known about and is being monitored. I guess this is one of the positive things after having one, we all get much closer scrutiny than anyone else.

Thank you for telling me about your experience with the extra coiling, I was hoping to hear from people who have had it done. Strangely enough the first time around hasn't bothered me much at all I guess because it happened and I knew very little about it until I awoke in HDU two weeks later. This time I am actually electing to go in there, a much more scary prospect!

Good luck with your MRI results...

Olef

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Hi Olef

As Sarah has said, I went back for a second three months after the SAH, although mine was to coil a 3rd anuerysm (not for a re-coiling of the original two) that they hadn't been able to coil during the emergency op. I was told of the risks involved and asked the surgeon who was going to perform the op what choice he would make in my shoes. He was very definite that he would have the operation.

Everything went well & waking up from the elective surgery was nothing like coming round from the op after the bleed. I felt like a fraud being in the High Dependency Ward after it as I felt so well! I asked to go home the following morning (they wanted me to stay in for 48 hours) and it was agreed that I was well enough to go home.

It is an incredibly scary situation to be in and I was terrified but I will never forget the feeling of relief after the operation was over.

Good luck!

Michelle x

Hi Michelle,

Thank you so much for posting! I was really hoping to hear this from someone who had undergone extra coiling and I am so happy it went well for you. If you don't mind me asking, did you notice any extra symptoms or issues from the extra op? I am hoping to be in hospital for two or three days and then take off two weeks or so to recover if all goes OK - does that sound as if it might be reasonable to you?

Regards and thanks again,

Olef

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Hi Olef,

I didn't notice any new symptoms from the 2nd op. As far as I remember I was off work for 2 weeks after it. I was very, very tired but I had already been tired as the SAH was only 11 weeks before the 2nd op. The main difference after it was the enormous feeling of relief that all the anni's had been dealt with.

Please feel free to ask me anything else you need to. I also found it helpful in the run up to the operation to not dwell on the surgery itself but to imagine the relief of waking up and knowing it was all over - hope that helps you.

Michelle x

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Thank you, it does help a lot. You certainly had a lot to cope with having to go back in after just eleven weeks, I hope everything is good with you now.

Olef

Edited by Skippy
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  • 3 weeks later...

Hi Olef,

I had my aneurysm coiled following a SAH in Sept 2009. At my 6 month follow up I was told the same thing as you, the coils had settled and they wanted to top it up. I have a wide necked aneurysm and they needed to insert a stent in the artery to hold the coils in after initial bleed. After an initial failed attempt they finally managed to fill it up a year later. I had no problems post op.

I think those of us who have had a SAH are left traumatised, I remember nothing of my haemorrhage. One minute I was eating lunch and the next thing I remember was waking up in ITU 10 days later. I have recovered well but not returned to work. Consequently when we return to hospital for checks it brings it all back.

I am due to have an angiogram soon to monitor coiling and another small aneurysm on same artery. You will be fine, its such a comfort knowing we can help each other.

With love Steph

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Hi Olef,

I too opted to have elective coiling on a 2nd anuerysm and was amazed at how different it was to the SAH. I was sitting up talking when hubby came in a few hours later with no pain and only the effects of the anaesthetic to get over. You have probably had your op by now so hope it all went well and you are feeling positive.

Take care

Jan

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Hi Olef,

I had my aneurysm coiled following a SAH in Sept 2009. At my 6 month follow up I was told the same thing as you, the coils had settled and they wanted to top it up. I have a wide necked aneurysm and they needed to insert a stent in the artery to hold the coils in after initial bleed. After an initial failed attempt they finally managed to fill it up a year later. I had no problems post op.

I think those of us who have had a SAH are left traumatised, I remember nothing of my haemorrhage. One minute I was eating lunch and the next thing I remember was waking up in ITU 10 days later. I have recovered well but not returned to work. Consequently when we return to hospital for checks it brings it all back.

I am due to have an angiogram soon to monitor coiling and another small aneurysm on same artery. You will be fine, its such a comfort knowing we can help each other.

With love Steph

Steph, thank you for posting your experiences, it is much appreciated! Like you, I was eating my Sunday evening meal when my first bleed happened and I have almost no recollection of anything from then on until waking up in ICU eleven days later. Returning to the same hospital does indeed bring it all back but these good people are experts at what they do and that is looking after us :-D Good luck with your coming angio and any treatment!

All the best

Olef

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Hi Olef,

I too opted to have elective coiling on a 2nd anuerysm and was amazed at how different it was to the SAH. I was sitting up talking when hubby came in a few hours later with no pain and only the effects of the anaesthetic to get over. You have probably had your op by now so hope it all went well and you are feeling positive.

Take care

Jan

Thank you Jan,

I'll leave a quick run down of my experience for those who follow on -

I went to Wessex Neuro Southampton last Wednesday for pre-assessment during which I had many tests including an ECG and bloods. I met one of the two Doctors who would be involved who explained fully the procedure, including the possibility of needing a stent and why. I left with a handful of blood thinning pills to take that evening and the next morning. I was back there at 07:30 on Thursday morning and down in the angio suite by 9am. A nice little syringe full of pre-med sent me off and the next I knew it was after 2pm and all over bar the shouting. The procedure had been completely successful with one small issue. For the op they had gone in both sides of the groin and the left side incision was still weeping a little so I had to spend an extra couple of hours down there with pressure on to stop it leaking. In the end it did.

Back up to the ward where I met up with one of the nurses I remembered from my previous stay. I had a bed right by the window so I could get lots of fresh air which I love. Standard obs at regular intervals, blood pressure, temperature, grasp the hands, pull toward, push away, etc etc. The only bad part of this period was throwing up while snoozing, side effect of the anaesthetic I guess. Most unpleasant. Only the once though thankfully!

The following day, Friday, had several drips removed, arterial and otherwise and the catheter (nasty things). One of the Doctors came down to see me and confirmed all was OK, the anny was filled and a stent wasn't required, and my next visit would be in six months for an MRA scan instead of an angio. I had to drink lots then once my bladder started working normally following the removal of the catheter I was free to go and left for home mid afternoon. I was able to walk out of the hospital and to the car park. Total time in hospital just shy of 32 hours.

Since I got home I've been taking it easy, catching up on my reading. I have been getting a recurrence of some of the tiredness and a fair old headache for the first few days but this has now eased and it's been a day or two since it was bad enough to go for the pills.

In conclusion, all my fears were unfounded. The staff at Wessex Neuro carried out the procedure flawlessly and looked after me as well as anyone could hope for, and I am a lot happier to know that I no longer have an at-risk anuerysm at large in my head. It was definitely worth electing to carry on with the extra coils.

All the best

Olef

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