So I went in for my checkup on my coiling that was done in 2010, and the radiologist that did it said sometimes the coils compact over time. There is a very small stem that they suggest clamping off just in case the walls of the vein had been weakened. They said they could clamp it, watch it, or ??? What would all y'all experts do? I think the main reason why I had the aneurysm in the foirst place was that I had very high blood pressure, and smoked. Now I don't have either, so that threat is no longer there. Can you tell I am not too crazy about going back in for a cranial surgery... Ohhh I hate this!
I may be where you are in a couple of months Deb and I have no idea what I will do...I had coiling in 2010 and about told about 2 years ago ... that the coils compacted slightly, but too many problems I would have to wait and be rechecked in 2 years and make some decisions...2 years was in June of this year ... I moved out of state so I am currently seeking a new Neurosurgeon to see what he decides...Can I ask you ... your recent update...did you have an angiogram for them to see the compaction? ~ Colleen
I had a failed coiling in 2001. The coil migrated out of my aneurysm and caused a bleed in another part of my brain. I underwent crainiotomy to wrap my aneurysm. I don’t understand what is meant by coils compacting. W
Deb, I would do exactly that, go in for the clipping surgery. Barring any unforeseen problems you shouldn’t have to worry about that aneurysm again. Praying for you to have peace about whatever decision you make. Keep us posted. <3
~ Carol
Thank you Carol it's just so daunting to think that I have to go in for brain surgery, but I certainly do not want to take the chance of another brain bleed also....that almost killed me. Ugh I hate these kinds of decisions...
hi Deb, I would do whatever the drs recommend, and if you are not comfortable get a second or third opinion. Why would they do a cranny? can't they just add more coils?? That's what they did for my coiling 4 yrs ago and they are fine thank God- I get yearly mra that confirm this. I am glad you quit smoking, focus on the positives.I did a lot of praying, radio sermons and it was the only thing that eased my fears- this was before I got internet and found you all, so I know how you feel, when he told me about adding coils I was shocked and blacked out for about 2 seconds. My heart goes out to you and please know we are with you every ste of the way- let us know please of further developments- we care! Keeping you in thoughts and prayers your friend Ron~~
Ron makes a good point, second opinion. I had to make a choice to clip, or watch my third aneurym. Get as much information as you can, pray, talk to family, then YOU ultimately make the decision that YOU feel comfortable with. Prayers going out for you.
I sure understand the feelings that you are going through. It was an emotional roller coaster for me until the day of my surgery. I am more than happy to answer any questions that you have.
~ Carol
I am under the impression that her doctor did recommend clipping. It sounds like the vessel walls are weakened and may not be able to hold up to more coils being inserted. But, I may have read that wrong.
Deb, I certainly would agree with what Ron said about a 2nd or 3rd opinion if you aren't comfortable.
~ Carol
DebH,
I'm a 'Hater' --right there with you--on the mere thought of having a craniotomy! lol, I also had coils that compacted....I sailed along for 3 years with the coils and never even thought about them honestly and at the time I had no idea that compaction was or could be an issue down the line..and how I knew something was amiss was the unmistakable pain that very suddenly hit me one night at home..dropped me to my knee's, no question about the pain, it was aneurysm related is all i knew!
So thats when I found out that roughly 1 in 4 coiled aneurysms from an sah/bleed situation will need to be re-addressed down the line...personally, this astonished me. The RadioNeurologist casually said "oh yeah, sometimes they need to be 'touched-up' afterward" .(..as if this were no big deal.)..to me, it was a huge big deal! I truly thought I had yet another aneurysm growing in my head, but lo and behold, it was my sprung coils causing me incredibly intense pain and re-bleeding...and now this had to be fixed..
I was told that they could add more coils..but my question was, if they added more coils to my sprung coiled annie...would the re-coiling take hold and never blindside me again like it did that night? I'm sure that question couldn't be answered to my liking.... I asked for a clipping instead, and after some research it was decided that a clipping could be done. I was so pleased to hear this--I like the idea of the permanent fix and never having to deal with unscheduled 'touch-up's .....If need be (hopefully no need will arise) I'd do a clipping if ever given the choice in procedures..In my case something HAD to be done, wait/watch wasn't an option...
Peace, and good luck with this, I know it isn't simple or easy to make such a decision.
Janet
Thank you Ron...The reason why they cannot add more coils is there is not enough room right there. That was my question also. He explained it that its like a mushroom the coils at the top have compacted, and then that left the stem empty, so there is not enough room in that short stem. ughhhh hate these decisions....
Thanks Janet, I feel like I probably just need to put my big girl panties on and judt do it. I am planning a move to Hawaii which will uproot my quiet life here. I have access to one of the greatest neuro surgeons in the country at UCLA right here now. I will just have to look into seeing if my insurance will cover all of this...
I agree janet, mine did the same acted super non- chalante re recoiling -like they were readjusting the points after a tune up on a car!!! lol, I guess they are attempting to keep us calm? guess what ? nice try! tc have a great weekend everyone!
thanks deb! I didn't even think about a mushroom shape, it makes a lot of sense. So Glad you are comfortable with the radiologists expertise/ findings, I guess the silver lining is that there IS a neck to clip, tc let us know the options they come up with, have they mentioned onyx glue or stent assisted coiling? I am curious since you're not a big fan of the cranny!!~~
Lol, Ron, really, Huh! I remember Jason saying to the NeuroRadioligist, "Touched up?? did you just say 'touched up"?? My house, it's in need of some 'touch-up'--but we're talking about my wife's brain , here. NOT housepaint !!"(lil) (Jason and the doc didn't see eye to eye, can you tell? lol)!
Colleen - you have a basilar tip aneurysm, don't you? I was told by my neurosurgeon that they couldn't clip that = the location was too dangerous. Do you also have a stent (can't remember)?
I would definitely say you are not crazy!! I vacillated between wanting coiling one day to wanting clipping the next, but in the end my surgeon said it had to be coiling and stent. After reading yours and others about your coiling compacting.......Ughhh!
If it were me and the clipping could be done with damage, I would definitely opt for that - I know it's scary stuff that we all must face at one time or another.
Hi Blessed1,
your story sounds similar to what happened with my coils--migrated out of the spot where the coils were originally placed, which is into the aneurysm sac (or at least they're supposed to be in the aneurysm sac and it'd be nice if the coils just stayed in place where they belonged to begin with) , !
When they say the coils 'compacted', that means literally that the little tiny platinum coils that really look like balls of tiny threads--over time, the coils can compress, compact, move around, thus letting blood flow into the aneurysm sac where you don't want the blood to be--and thats when they have to re-address the same aneurysm once more to ensure you don't wind up with a bleed/rupture due to thr coil job coming apart ....like you, mine came apart and'failed', and I too got a a clipping done (i had no followup after my coils were placed...did you? )
Its not often I see another 'failed coiler' with a similar migrating coil story behind them--how did you know your coils had compacted, due to new pain in your head ? or ? i've noticed most people who have to be re-coiled don't go thru quite the distress that I did with mine..then again most coiled annies' have a consistant series of CT scans afterward, (unlike myself).
lol
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Much Apologies! I’m just ready your share. So very sorry. In answer to your question, I woke up in neuro ICU after coiling, and was told the coils migrated somewhere else and caused a bleed in my brain. Not sure how they knew of this right after, but I did have some strange occurances shortly after, and had “absence seizure” as well. I eventually weaned off the seizure medz, unfortunately had to go back on many years later. I’m off again, as it turned out it was my heart not my head causing syncope episodes! Had to get a pacemaker… my heart rate was 30 beats per minute. I was told had I not come in for those episodes, things might have turned out not so well. But that was 2019, and so far so good. The only residual issues are some cognitive quirks as I like to say, but I’ve found my way to get around that. Praying your complete healing Alwayz!
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