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hi new member, with coil compaction - Dawn


Guest liitl d
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Guest liitl d

Hi my name is dawn, I had a sah in March 08 and had emergency coiling which was very effective and was doing great, then, on new years eve I got a letter telling me that after considering my scan they have noticed the aneurism is filling up again at the base. They think it is due to coil compactation??? Instead of an MRI scan in Mar 09 I am to have a catherterised angiogram to determine what is happening. I am waiting for a date to go in, which, is driving me barmy. Lets get in and get it sorted now!!!

I know I am impulsive and impatient, and I am not the only one waiting but lets just get on with it.

Sorry if I sound self absorbed but the illness I can cope with the not knowing is harder.

I am a 48 year old lady, married with two sons and a beautifull grandson of 7 months. (who I might not have seen if it wasnt for the fabulous care I got at Preston hospital uk)

Anyone else know anything about coil compactation and the implications of it? My gp feels that there is a small chance they may do nothing, but thinks that I should prepare for more surgery.

Havent been feeling too well just recently, Headaches, dizzy, fuzzy head. Doc thinks headaches are stress related but dizzy feeling due to anuerism.

Would appreciate to hear about your experiences too.

All the best Dawn

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Hi Dawn

Welcome to BTG and thank you for telling us a bit about yourself. I can't help at all with coil compaction as my Anuerysm was clipped. I think that we do have at least one member who had coil compaction will try and find the link for you.

Hope you find the site as much of a support in the next few worrying months as I always have. Look forward to hearing more from you. Take care.

Janet x

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Guest liitl d
Hi Dawn

Welcome to BTG and thank you for telling us a bit about yourself. I can't help at all with coil compaction as my Anuerysm was clipped. I think that we do have at least one member who had coil compaction will try and find the link for you.

Hope you find the site as much of a support in the next few worrying months as I always have. Look forward to hearing more from you. Take care.

Janet x

Thanks Janet I appreciate any info I can get and thanks for the welcome it is much appreciated dawn x

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Hello Dawn welcome to the family ( thats what I call everyone ).....

I have a neck on my anuerysm and YES i do worry about it..... I look at it like if it was really worrying my neuro surgeon they would get me in now and do it..

I hope you hear something soon x x

love donna

xxxxxxxxxxxx

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Hi Dawn ...a very warm welcome to you :D .....i am clipped same as Janet and Jess...so cant help you about coils compacting......sorry......

But as Janet kindly looked up for you earlier, Untreated/Unruptured Aneurysm Forum should help you. Take care and look forward to hearing more from you.

Take care

Love Tina xx

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Hi Dawn

Welcome to BTG.

I've had two aneurysms coiled, in 2004 and 2005 respectively. I dont remember being warned about coil compactation, but I did read about it in the vast amount of scary medical sites I checked out online.

I think my neuro surgeon mentioned the risk when reviewing the results of a follow-up mri, but not in any depth, sorry.

I've had the angiogram too, in between coilings.

Hope you get some news soon, take care.

Blondie

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Guest ElaineW

Hi Dawn and welcome, mu mum had hers colied in May last year but coil compaction is a new one on me but would be interested to know more about it. Yes I agree waiting is the hard bit but I guess you would have been sent for if they felt it urgent. Hope things happen soon.

Elaine

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Hi,

I know it's scary but try not to worry too much. I've got a friend who had to have some more coils put in and they were in and out in a week! The damage is done by the haemorrhage and there is a lot less risk in being recoiled than you might think. Although there is a risk in any surgery or medical procedure the risks are not significantly greater than a "normal" cerebral angio. Try and speak to your Neuro Consultant or Specialist Nurse, even if you just call up and ask to speak to someone, expert medical advice is key in understanding your own individual issues.

Scott

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Hello Dawn, Scott in the previous post is spot on, I think others have mentioned it too ,the hospital would indeed have done something (at least an angiogram) before now if they felt there was any urgency. As it is you will be on the list with all the folk who are waiting for an angiogram, I am too, just to ensure that there is nothing going on in my brain that should not be, what a good job they can't read my thoughts :wink: One thing that happens almost everywhere in the UK and probably throughout the world, is that nurses and surgeons classify things as routine, because to them they are, but to us, who only know what the SAH and the surgery following that etc was like it is a very big deal indeed, and not routine at all! A tad more explanation would help all round, I reckon. Stay cool and I do hope they do your angio soon to put your mind at rest :)

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Guest Vivienne

Hello Dawn,

I'm so pleased you have found this site - I was going to tell you about it when I was next on the Brain and Spine Foundation site.

Welcome! The folk here are amazing!

But speaking of the other site, do you know there is a helpline number that you can call to speak to a trained neuro nurse? I think you can email them too. Might be worth a shot if you can't get to speak to your consultant?

Anyone on here who is not familier with the above site, might like to give it a visit, it's got some very detailed and helpful information on a wide range of neuro issues.

Vivienne

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Guest liitl d

Thanks to everyone who has been so kind to velcome me to this site. Is is so great to speak to people who have been through the same type of thing. I am hoping to hear very soon about the angiogram and of course the outcome. I will let you know when I do and how I get on. I hope everyone keeps well and look forward to hearing more from you all in due course. All my best wishes to you all and thanks Dawn x :P

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Dawn,

Welcome to this wonderfully supportive site. I had my SAH in Feb 08, follow up MRI in Sept 08. I too had coil compactation. The neck had re opened to about 7mm and surgeon thought it best to operate, so in Nov 08 I was back in, I had 7 more coils fitted and a stent over the neck. The op was much less traumatic and I was out within 2 days.

I am back at hospital on Mon for follow up catheter angio.

Hope this helps.

Jan

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Guest liitl d

Hi Jan

Thanks for your reply, It sounds very similar to what is happening to me. I hope all goes well for you on monday. Let us know how you get on.

I still havent got my date for my angiogram yet, but, it cant be long as I am supposed to have it in march/april. I believe you get a months notice, so I should hear something very soon. May I ask did you get any symptoms with the coil compactation. I am getting a lot of headaches and had a few dizzy, fuzzy type episodes.

Look after yourself and hope all is well.

Regards Dawn X

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Hi Dawn

Welcome to the site. I had my SAH in nov 07 and didnt feel quite right lots of head pain, neck etc, just not right. So my consultant sent me for an early angio and they found that the coils had uncurled so that the aneurism was filling up with blood again and that was causing the pains etc, they didnt call it compactation though but now i am wondering?

Anyway i went back into hospital in Sept 08 for recoiling they put another 3 coils in which now makes 11. I was in just over a week due to other test, eyes (i still have photophobia and problems with hearing).

I hope this helps and you get your appointment soon, try not to worry difficult i know rest up listen to your body and rest alot..take care.

Love luck and laughter

Michellexxxxxxxxxxxxxxxxxxxxxxxxxxxx

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Guest liitl d

Thanks to everyone for kind words, thoughts and advice. I have now got my date for the catherterised angiogram. It has been moved forward due to the headaches and fuzzy heads I have been getting. I go in on Mon the 16th of March and will have to proceedure on tue the 17th. Well here goes, fingers crossed, but, I think the knowing will be better than the not knowing. Well almost all of you have been in the same boat and here I am exchanging messages with you all so how bad can it be? As my sister has just said to me no-one gets rid of me that easily. I think thats a compliment!!!

Anyway I will be in touch and let you know how I get on. Take care of yourselves and good health.

Regards Dawn X

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