Okay, so I went in for my angiogram today, and all went well until my neurosurgeon opened his mouth afterwards while I was still in the OR. It went sort of like this: “Well, the GOOD news is we took some good pictures today.” To sum up the rest of the conversation went: The aneurysm is back, and he does not think that it is amenable to coiling. So, he’s going to call me in a couple of days after he studies the films some more, and then make arrangements to clip the bastard. I’m not happy.
(((((Daphne))))))
I am so sorry to hear this...
You mean the clipping didn't work the first time...I am so confused and upset that your annie is back...
You have my prayers...! Colleen
The first time it ruptured and he coiled it. Now that it is starting to come back he said we will have to go the surgical route and clip it.
Oh Daphne, I am so very sorry to hear that. I can understand why your not happy!
Thoughts and prayers.
Kimberley
I too am Coiled Daphne...this scares me...I go in less then 2 weeks for my f/u angio...
originally no one tells us this can happen with coiling...
I am so sorry sweetie...that you have to go through all of this Daphne...so sorry...
Cyber ~ healing thoughts...your way Colleen
Daphne...did you initially have the highly marketed minimally invasive coiling? Who was the bastard who made and/or recommended coil vs clip initially?
Please all remember when Gugliani designed gdc coils it was for locations that could not handle surgery /clips ...not to replace surgery for corporate profit...
It is not uncommon for additional treatment w/coils that have compacted, for stents to be added to damaged arteries, at times w/o consent forms, or implant records;
Daphne, wishing you strong family/friend support,
Many prayers around you...
Pat
Colleen...I am the wickedly wired woman a/k/a coiled...and stented off record / off consent...
What we do not know are the stats on this... when you have time, I can tell much that is not told to us... for our informed decisions... I so regret any of us have to go thru this...
You and your follow-up is also wrapped in my prayers.
Pat
I was initially coiled, and as I was in a coma at the time there was no consent on my part. From what I have been told the chances of an aneurysm returning is small… less than 10%. I have one of the best neurosurgeons in the nation, Dr. John Reavey-Cantwell and I trust him and his decision to coil me back in December. Maybe I’m naive and just don’t know enough about this stuff to be angry with him. And I’m not certain any of that matters at the moment. I am facing a surgical clipping and everything that may or may not come with that. I have a son who needs his mommy to be ok. And I have a girlfriend, a mom, and a brother who are not ready for any of this. I am an emotional wreck today, and I literally do not know what to do with myself right now.
Thanks Pat for the prayers...!
I am starting to see this about coiling ... they don't tell you .. it may not work...however, in my case...my annie is on the basilar tip...not a good place (not that any are in a good place)...mine is very bad for surgery...so coiling was good...and I do have one of the few Doc's ... that if is doesn't work, will still clip an annie on your basilar tip....
I like your wickedly wire...I learn alot from you Pat...
You got my prayers too...Colleen
Daphne...you have every right not knowing what to do with yourself right now...
You have been on my mind since I read this post last night...
so sorry Daphne…I am going for my 6 month coiled angiogram in 2 weeks…I am scared also…they dont tell us this can happen , thoughts and prayers
Daphne,
I'm sorry you're going though all this! Sending you a huge ((((((HUG))))))!
If you are not comfortable with clipping, I think I would speak with the Neurosurgeon about repairing your aneurysm with Onyx (a superglue like substance that is working very well with stuborn aneurysms like yours) or HydroCoil Embolic System (these coils have a coating that expands when in contact blood in an aneurysm and has been proven to cut the chances of re-occurance). Not all Neurosurgeons are approved to use these products. Just because your Neuro can't coil your aneurysm, dosen't mean that it can't be done properly with the right product somewhere else.
The next step I would take is to get a second opinion from a Neurological Interventional Radiologist ( NIR) to discuss your aneurysm. Get a copy of the angiogram photos (all you have to do is ask the hospital where your angiogram occured for the disc...those photos BELONG to you). Do some research on all the NIRs in all your local hospitals or ask here on this site for NIR recommendations.
Five years ago, my aneurysm ruptured, and re-ruptured, so I didn't have a choice how I was treated. Luckily there was an EXCELLENT NIR two hours away. I have another small aneurysm and I will not hesitate to have that coiled when the time comes. My aneurysms are in locations where clipping would have been extremely disruptive to my brain. I wouldn't hesitate to recommend coiling. There have been MANY studies recently that have proven that coiling is the method that has fewer complications and is the treatment of choice. So if you're not comfortable with the clipping plan, ask for alternatives, and/or seek a second opinion. It's your brain, please make sure you're comfortable with whatever treatment plan YOU choose after doing some homework.
Good luck!
JulieNH
Julie, it's funny you should mention the ONYX prcedure. My neuro is a pioneer in it's use! I expect to be talking with him within the next couple of days so he can give me the details. I will be certain to ask about ONYX.
keeping u in my prayers hunny...prayers for healing, sound ming n sound body...
i used this verse to pray almost everyday when i was healing and trying to regain my peace of mind..i hope it helps you as much as it helped me
Peter ch 5 verses 10,11
10 But the God of all grace, who hath called us unto his eternal glory by Christ Jesus, after that ye have suffered a while, make you perfect, stablish, strengthen, settle you.
T him be glory and dominion for ever and ever. Amen
Hi Daphne -
Just to chime in --- I was coiled 7mos ago (unruptured), and at my 6mos f/u my neuro said that based on how it all looked in there, there was greater than a 99.5% chance I'd never have a prob w/ that one again. I'm so sorry that you have to deal with more, but I do believe in coiling as a treatment of choice when possible. Nothing is perfect, but I really do believe that coiling is not riddles with problems. We make the best choices we can in the moment (us, or in this case your wonderful neuro), and that's the best we can do in life. You will now have another tough choice to make, but you WILL make the best choice for you - even tho you cannot yet know what that will be.
Support coming at you from CA!
It will be okay....you may want to punch me for saying that when you're so (understandably) upset, but I do believe it - you - really will be okay.
xo