Hello all, I'm new to this forum and I am grateful to have found it. I survived a rupture almost 9 years ago. I was care flighted and had a clipping. I recovered quite well. I was 29 years old at the time. Since then I have had an angio CT about every 2 years. Well, a couple of weeks ago I had my angio CT and the same aneurysm is back, only now it is much more complex and fusiform. So I've met with 2 surgeons and I'm waiting for one more opinion from the surgeon who clipped it originally. So far, It looks like my only viable option is going to be the pipeline due to its size, location and the vessel coming off of it.
The frustrating thing is, it seems like the coilers want to coil, the clippers want to clip and the pipelines want to pipeline...... How about suggesting the best treatment for the aneurysm itself regardless if that means that you are not the best option??? I have been told that it is somewhat of a "turf war." Crazy!!! Ok, sorry for my little rant.
The bottom line for all of us, is that WE have to become educated on OUR condition and choose the best treatment option with the information we collect.
I will be praying for everyone and would appreciate the same. Thanks for taking the time to read my story.
hi Aimee! so sorry you have to deal with this, my heart goes out for you. But i will be interested to know what others say since i've never heard of the surgeons only suggesting their particular style of treating. Maybe times have changed? i think they are the experts and are very very good at what they do and if they told me pipeline i would definately do it but if your not comfortable i suppose a second opinion is in order! oh by the way Welcome to the baf website! so glad your here as it has helped me so much-folks here are awesome! ps- don't worry about your little rant !!!! loved it,may God Bless you & yours
Yes, I found it very strange and as well. The neuroradiologist who performed my angiogram suggested the pipeline and referred me to a surgeon in Denver who does pipelines but I was only able to see his partner who coils and guess what? He said coiling and stenting is the way to go.... My next appointment 2 hours later was with a surgeon who does pipelines and he said pipeline is the only way to go... Now the surgeon who clipped it originally is going to be weighing in and my guess is that he will suggest clipping is the only way to go. Now if he comes back and says pipeline, I will have my answer. I totally trust him and his opinion. He is one of the best in the world. The coiler surgeon is the one who actually said to me that this is a turf war. Needless to say, that wasn't the only thing that he said that made me very uncomfortable. I won't go into detail but I know for sure that he will not be operating on me in any capacity.
So it will be interesting to find out the other opinion. I'm just now learning about the pipeline and so far it looks pretty encouraging. Do you know much about it?
yes Aimee thats almost unbelievable!! thank you for replying but i'm sorry don't know much about it but theres a group here that does - up top click on the red "groups" and there you will find the ped group . others will hopefuly reply here, from what i've heard here they're new and work very well, anyway i sure hope you get the turf war straightened out with a confident battle plan and remember we're here 24/7 for you! Best wishes to you!
I am so sorry for your diagnosis Aimee...and you are so right...we must be our own Medical Advocate...I was told coiling was the best because my annie was in a bad place to clip (Basilar artery tip)...now almost 2 years later and coils have compacted, feeding the annie more blood...I was told once I was coiled that would be it...the annie would clot and die...hah~ not the case...I feel the more knowledge you have to make a decision the better...
prayers out to you in making this decision ~ Colleen
Aimee-sorry to hear they are making you feel like a piece of taffy. I had my coiling done this past February by Dr Kim Rickert at UT Southwestern. They are awesome. We will all keep you in our thoughts & prayers. Hopefully they can get together & give you the information you need to make a good decision for YOU. Keep us posted.
My surgeon was well versed in all three, coiling, clipping and the PED, at Hopkins, so I had one hell of a choice to make since mine could be treated by either of the three options, and it was all about my preference. If you need any info on the PED, lemmie know, cause that's what I went with. I'm sorry you're in a "turf war" -- that so sucks and makes the decision that much more difficult.
Well, I finally heard back from my surgeon who clipped it originally. He agrees that the pipeline is really my best option. So I've scheduled surgery for December 12th. Pray for me please. Thank you all!!
It must feel good to have made a decision and have a plan. Do lots of fun things in the next few days as you may feel less well for a time afterwards. I hope and pray all goes well next week.
I'm stunned. I have talked to SO many people that have have annies . It's usually the ones that are coiled that have issues later on . I myself ruptured May 5, 2011 and was given 9 coils and 1 stent . I always thought and have read and heard that clipping is final , thats it it can't possibly grow back . You are the first person that I've heard to have a problem with the clipping . I am so sorry you have to go through this . Any procedure having to do with the brain I would consider risky but you have already had the Invasive scary crani & clipping this pipeline stenting will be a piece of cake compared to that . Pipeline is my next move should my coils ever compact . My annie is 90% filled with coils Doc couldn't get the rest in there because I have dainty sensitive vessels and I began to have spasms during procedure twice . Best of luck to you Aimee .xx
I agree with you Aimee, I had a wrapping done on my aneurysm 2 months back and now doctor told me it is not 100% workable. They say that clipping was not possible in my case, and I am now left with no choice. :-(... Can anyone tell me if clipping is possible after wrapping?
Hi Aimee, due to too much trauma to my brain esp the fact that the Doctors herniated (tore) by parent vessel (and this takes along time to heal)...the Surgeons told me, I will have to wait for about 2 years to have an angiogram and at that time they will make decisions and give me options...I am in the process of looking for new surgeons, etc., and doing the things I should do in order to not have a rupture...and keep alot of faith...~ Colleen
Thank for the reply. I guess the underlying issue with mine is that it ruptured and I was care flighted and had emergency surgery. They did not realize at the time that the vessel in its entirety was weak, not just a spot. So this has manifested so many years later and is now fusiform. On the bright side, there wouldn't have been treatment for it then anyway. So I gues I'm counting my blessings that at least now there is a form of treatment. I will be praying for you and that the doctors will have wisdom.
What is wrapping? I will pray that a solution will be available to you. Just do some research and I've heard that the Mayo clinic is amazing, when it comes to difficult cases.
Thank you sooo much for the reply!! I've been a little worried, just because this is such a new procedure. Did your aneurysm have any vessels feeding off of it?