That sounds kind of funny as a title...I guess.
I found out two weeks ago that I have to have another coiling done because of the way my aneurysm is formed. Back when I had my rupture (July 2010), he fixed what needed done right away and was hoping to see improvement from the rest of it on my 6 month angio. I'm not sure what he was looking for, but it didn't do what he wanted. So, he said for my safety we need to fix it with more coils. This has sent me into waves of nervousness and anxiety. I came through the rupture and 1st coiling with almost NO side effects. I thought I had made it! Now, here I am faced with it again. I guess when my doctor does the second coiling it will block off the entire blood vessel that the aneurysm is on. That fact alone has me scared to death. I'm afraid it will cause my great problems. My doctor said, "I would not do this if I thought it was a great danger." But for some reason I still don't find comfort in that!
I guess I feel like no matter what this is something I will worry about for the rest of my life. I need some encouragement from people that have been through this. Is there anyone here that has had coils for several years with no further problems? No second surgeries and things are going well for you? I'm asking because I feel like there are so many people on here that go through these things over and over. That scares me. I just wondered if there are any successful stories with coils.
Hi Amy -
I hope that there are lots of people who respond with good long coiling success stories! But, I do imagine that many or most of those people, who are going on and living without the fear and complications, are not on these boards! I hope that there will be good stories - I need them too - but I try to remind myself that we who are on this website are a small subset of people w aneurysms....(a great subset - but a subset)...
I'm over tired right now but will touch base again soon.
I am not a long term survivor, but I did have my first emergency coiling last February, was released from the hospital about a week after knowing that I would return for another re-coiling the following month. I went through the second surgery - and like you was pretty nervous and scared because I then had had an entire month to research, read stories, and think of all the what if's???
Although my situation is different than yours in that they just went back in and added more coils without block off the blood vessel, but I am still on a wait an watch since the neck of the aneurysm has not closed and healed itself. (I didn't have a stent placed in yet and am hoping not to go there.)
I tell you all this because although I have had major changes for me, the care and treatment I received was nothing to have worried about. I do have some limitations that have changed my life - can't lift over 25 pounds and no stress, but overall have been fortunate that the cognitive functions that have been affected are not to such an extent to create severe problems for me.
I hope that you may find some comfort in knowing that not everyone is able to have one simple coiling and never worry about it again, but those of us that do have more are just fine with our new life too! Good luck with your next procedure and I hope you can find some answers and bring peace to you prior to undergoing your next coiling.
Hi Amy, I'm Nell and July 2009 I had a rupture, and they coiled me. It is FINE with no further problems. I am doing great since the annie, and it's been almost a year and a half. I know you must feel anxious, and a bit nervous, it's natural to. I just want to encourage you to keep the faith. I know we all have different situations, and many of us have various ways of treatment , yet we share many like things with our aneurysms. I wish you the BEST, and will be checking on here to see how you are doing.
Hi Amy, Gosh I was hoping that more people answer this forum. I had my coiling in mid Nov 2010. I am in more pain then before it happen. I prayer that my pain will go away soon. I pray for your 2nd surgery. I am sure it will go as good as the 1st. You already are a pro at it.
Hi Amy, I’ve had coiling done three different times. The first time was in July of 2003. I have a large aneurysm that was oddly formed behind my right eye. It was in the right carotid artery. The doctor weighed in on a block of the blood vessel or a stent and coil. We opted for stent and coil. In 2003 the stent was not authorized in some of the major hospitals, I was in Tampa. I had in July of 2003 18 coils and a stent. My initial recovery took 14 months and I was back at work and for the most part able to do whatever I’d always done. Then the symptoms were back. Coiled again in Jan 2006, 29 coils and again in Aug 2006 with an additional 31. I went through a lot of adjustment and treatment. Today I am limited to light lifting and having to rest often. However I am able to enjoy a lot of the simple pleasures of life. It has been a little over four years and the annie is contained. Total of 78 coils, Be very hopeful and best wishes.
I had my coils on November 30th...and go back for angio in June to check on the annie coiled and the one annie that is small and they are watching...
Unfortunately, until I read stories on this site...I was under the impression coils were a sure thing...one time only...and now I am scared ... for me, you and so many of us...it seems they don't know enough on how the coils will take...I was told a few weeks ago when I went back to neurosurgeon they are checking (in June) that the coils cut off blood to annie and if not will have to correct or add coils...I was like...What???
I donot blame you for being scared...but Amy come here and write how you feel...and know you have my Thoughts and Prayers...and I do believe in most cases the neurosurgeons donot want to fail ... so when they take you back in...it is to fix you basically right...
However, if you feel you need a second opinion...you get one...it is your brain...
Gotcha in my Thoughts...Cyber ~ hugs Colleen
Thank you for the encouragement, Nell. I appreciate it. There is nothing wrong with my first coils from 7 months ago. They just need to fix part of the aneurysm that they left untouched. They didn’t want to do too much right away. I was hoping by some miracle things would change, but it didn’t.
Wow, Jerry. That all sounds so scary to me!!!
Colleen, I was under the same impression until I found this web site. Now, I’m afraid for the future, but I think it may be like Jennifer C. said. I imagine that those people that have successful stories and live without fear are probably not on these boards. They are probably living a happy healthy life. I pray that is where we will be. I feel like I’m so young for this, 32 to be exact. I also have 4 young children, 6 years and under. I need and want to be here to raise them, more than anything!!!
Read your Note...
You got big big prayers and well~wishes coming your way...!
Your babies will have their mom...(((((cyber~hugs))))) Colleen
I spoke w my surgeons nurse practioner the other day and asked about the liklihood of problems at the 6mos follow-up angio - and she said that they're looking to see that a scar has formed over the opening of the aneurysm, and that in ones that are less than about 12mm they are almost ALWAYS fine and scarred over the way they want them to be. Sometimes bigger ones have compressed and need more coils, but even then, that's the minority. She made me feel better. They wouldn't be offering this as an alternative to clipping if they didn't know that it was a great alternative with less risk in the moment and in the future. I think it will all be fine. I'm trying to plant myself in a place of trust - and sometimes it even works :)
And it's not like this procedure is only 1 year old - it's been well established for at least 10yrs - and these doctors are very very smart people who are truly making choices that they believe are in our best interest. My surgeon does both craniotomy and angiography, and he much preferred doing the coiling. So I didn't feel like he chose or recommended coiling b/c it was the only type of surgery he did. He's one of the best in the country - and I just have to try and put my trust there. It's tough though....you know I understand. Hope your weekend is good!
You are in my prayers for your success... please do not be in overall fear for your future...I will write more later... Please just know my thoughts / prayers are with you.
Thank you for posting this to this particular blog...it made me feel so much better...!
Have a great evening...hugs to you Colleen
Thank you for some encouragement!
I think the people that were wam-bam-ruptured-coiled-all done are the people that tend to not seek support so you never hear from them! The problem cases are often the people here. Perhaps I'm wrong about that. At any rate I'm a wam-bam-ruptured-coiled- and still having recoils done to this day on original annie. I'm on my 6th(7th?) for the large nasty stubborn annie and I simply consider myself lucky since I lived throught the rupture 5 years ago and have relatively little deficit. You relax and just go girl!
Thanks. Wow! That’s a lot of coiling. I’m glad to hear that you have very little problems from all of that. My aneurysm wasn’t large compared to many people’s on here and there is nothing wrong with my first coiling. They just didn’t do as much as they could have when it ruptured because they didn’t want to cause me further damage. The coiling will be blocking off my blood vessel altogether. That’s the part that scares me!
I was one of the wam-bam-ruptured-coiled-all done people. But found out I have 5 annies and only able to fix 3. I go back Feb 21st to check on those 3 and then also stent and coil another one. The only lasting effects I have are hair loss, fatigue, and the occasional headache.
I guess I should add extreme anxiety and fear of doing too much and fear of doing too little! LOL So until I get the "you're good for 5 years" check up, I feel fragile and damaged. So I tend to walk around like I will break of I bend over or get too excited. It's a rough road but one we all seem to be surviving.
I hope there are the ones that are surviving and living their lives and just don't know about this site to tell us about it. Some people deal with life changing events by ignoring that it happened so NOT coing to this site may help them heal. I, on the other hand, need to read and know I am not the only one. But my doc and hubby told me not to read too much when I'm having one of those days where I am scared.
So I wish everyone the best. Just remember to always return to the site and give words of encouragement as well as asking the questions. This is for support for many reasons for all of us.
God Bless! ~ Tina Hunter
Me again - Don't want to sound like a broken record but I do think there many wam-bam-coiled-done people out there that simply don't require or want support since everything went fine and they have basicly forgot about there little glitch in health. They feel no need (nor should they be required to) advertise it.
I also think there are many (as Tina suggests) that for some the best treatment is to simply forget about it and never visit a aneurism site or let it come into there thoughts at all. I in fact go through long periods of self induced "head in sand" treatment. I can sometimes manage to simply give my problem to god and let him handle for a while. He manages it fine. That may sound kind of religious which I am not so good at but it's the best way to describe how I manage sometimes.
Your on the road of recovery and on the road there are numerous footprints in the dust. When you notice one less set of footprints it's simply because all the others have carried you for a bit! Go forward on the road confidently. Your still making footprints in the dust! Your a winner.
Amy-they are people on this site that have wrote in on their annie aniversaries and have commented on how many years they have made it, just need to search a little (look on groups under annie survivors).