Hello, I just wanted to share that on Nov. 21st I was scheduled at UCLA for a pipeline and embolization. I have already had stent asisted coiling done in Jan. after I collapsed in my kitchen, was taken to the ER and found I had SAH from a large Vertebrobasilar aneurysm. About a month later it was retreated with more coils ( it rebled). 6 month angio showed there was still filling at the base of the neck, that I was still at risk of regrowth/rupture. I went and sought different opinions. I ultimately chose to do the PED w/ ULCA even though it has contraindication for its use within another stent, and where my anni is. It was the hardest decision I had to make, but I was told it has the highest likihood of potential long term cure of my aneurysm. There would be major risks involved (strokes/rebleed after placement)
the "plan" was as follows:
under general anesthesia, access both femoral arteries. On one side, we will go to the right vertebral and then into the aneurysm (outside of the stent…see below) in order to put additional coils in the aneurysm and distal right vertebral to help induce more clotting in the aneurysm and prevent filling of the aneurysm from the right vertebral, while you are on the aspirin and plavix (which helps prevent clot forming on the stent [what we want], but also inhibits clot forming in the aneurysm[not what we want]).
On the other side, we will go into the left vertebral artery. The prior stent goes from the left vertebral artery to the basilar, so we will be going within the prior stent to put the new Pipeline device from the basilar to the left vertebral.
So, eventually, we hope that the aneurysm clots off (which also means the right vertebral would stop at the level of the aneurysm…not filling the aneurysm any more), and the Pipeline in the left vertebral to basilar keeps the filling of the basilar and all of its branches, but the mesh of the pipeline prevents any flow into the aneurysm from the left vertebral.
Well, I was in 5 hours of surgery. My team tried several hours straight to get the catheter to go straight through the previous stent. They tried different tricks, but were unable to because of the way my artery is formed (its not quite straight-malformed) and the way the neuroform stents as it curved w/ my artery created these openings that the hairline leader would weave almost in and out instead of going directly across so that thay could deploy the pipeline stent. I was told after several hours of poking and prodding my artery began to spasm and that's when they decided to stop the procedure. At this point they dont know what the next step is. I may be getting in contact with another top notch surgeon to see if a bypass is at all possible. Not sure if there is anything that would suffice in getting blood flow to the crucial parts of my brain. I dont meet with my neursurgeon for follow-up Consultation till Dec. 10th. I was taken off the plavix and the higher dose aspirin- Im still taking baby aspirin (81mg), tylenol and they sent me home w/ a lower dose hydrocodon. I was actually relieved the pipeline didnt work- because I really was afraid of the consequences. Im glad at least UCLA has their own images now, and first hand experience at my situation- it is very complex as I have been told more than once by other doctors. ( I was LLUMC the first two times, and they sent me to UCLA where they would be better equipped to help me) I really hope they can get together and find a better solution that will be long term. Im so tired of the stress, worrying if I have to say goodbye to my kids, if I get a chance to say goodbye, how long before I rebleed/rupture etc. I just want to heal!!!
Tears coming down my face...I hope and pray right this moment...the Doctors can find an answer and take care of your Brain aneurysm...~ Gotcha in my Thoughts ~ Colleen
Oh sorrow - I am so sorry for your ordeal! I hear your frustration, I feel it. I hope that you find answers that DO work soon. Please keep us updated on your condition - I'm sure many more are listening than are commenting.
thank you Sarah. I hope so. Im hoping for a miracle, or someone to come forward with a similar situation. Im hoping the Docs don't give up on me. I will keep fighting, I have to!
*** An update. My next step would be to do a Cerebral Bypass surgery. I have CT angrogram brain-with contrast scheduled for Dec.26th. to take a closer look and see whats available. Let me tell you- I AM scared!!!!
Back of skull view. * I added the notes in red. Doc. did the arrows in pen, and the extra filling of the aneurysm to show that it needs to be completely coiled. So, I would have a bypass surgery and coiling of aneurysm during same admission.
They would go in from the right side - back of head behind my ear. area.for the craniotomy part.
Wow. I look at your pictures and they remind me of mine. It's really hitting me hard, your story. I am so sorry you are dealing with this, it just breaks my heart! I am guessing they are coiling too because it's such a high blood flow area and such a large annie it'll be safer that way? I had coils with my PED (not the usual plan - haven't actually seen another person that had coils at the same time as their PED...) because it was such a high volume artery they were afraid it'd still fill the annie but not be able to escape with the PED in there before it adjusted to the PED and it'd burst. So they coiled it simultaneously. I only have one artery in the back of my neck - the other either was never there or it atrophied with the onset of the annie. So they did consider bypass for me, but I was terrified and went with the PED. I would have opted for the bypass if there had been no other option because life is always worth the risk, but even the PED was frightening (and so was the second PED surgery 9 months later). Read up on the bypass, get some support on here about it so you know what to expect. Knowledge is power! I will say some prayers for you - and I can't believe you have to have a test the day after Christmas. Ugh - I know what it's like to have this whole process invade the "normal" space and time of life. Having to try to schedule things around major holidays/birthdays/anniversaries/etc. - then it leaves a lasting imprint on the mind for all of those times. It's just awful. I will be thinking of you and anticipating your updates!!
