Brain Aneurysm Support Community

Pipeline stent

#1

My brother has an unruptured cerebral aneurysm, a large fusiform bilobulated basilar aneurysm. His only option is to have the pipeline

stent procedure. I was wondering if anyone has had this procedure done and has a success story to share and possibly give my brother some hope. I really would appreciate any encouragement or support on this procedure. Thank you, Cindy

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#2

Hi Cindy,

Yes!! I am the recipient of the new FDA Approved Pipeline stent. I am 3 months post op, feeling good, but get some headaches and sometimes very bone tired where I can sleep the day away. I have postings under both the forum, blogs and I also have a Group called the pipeline embolization device which you should read. So far I only know of myself and Giovianni who have had the pipeline and both of us have blogged about it.

If you have any questions, please let me know, I will do what I can to help aleviate your bother's worries! Compared to what some of the others have gone through with coils and clipping, the pipeline is a much less invasive procedure.

Best wishes,

Linda

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#3

Thank you so much Linda,

I pray that you have continued healing!! I was wondering if you could share where and with what Dr. you had this procedure done? My brother has been refered to a Dr.Adnan Siddiqui in Buffalo, New York. Since this procedure is new, he is the only one of few that has done it. I will pass this information on to my brother. He and his wife are going through so much as you know. Now another Dr. from U of M hospital in Ann Arbor, Michigan wants him to put a stunt in first in case he gets water on the brain it can drain into his stomach, then after that do pipeline stent. Again thank you for taking the time to email me, it helps!

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#4

Cindy,

Thank you!! My pipeline was done at Thomas Jefferson University Hospital for Neuroscience in Philadelphia, PA, by Dr. Pascal Jabbour. Dr. Jabbour and the neuro team at Jefferson are proctors for the pipeline stent and are teaching other surgeons throughout the country how to do the pipeline surgery. http://www.youtube.com/watch?v=KEPMjxoAdjs This is a link to a youtube video Dr. Jabbour did about the pipeline stent. http://www.phillyburbs.com/news/local/burlington_county_times_news/jefferson-offers-life-saving-pipeline/article_acd54e48-8719-11e0-a138-001a4bcf6878.html This is an article from an interview Dr. Jabbour gave, which was actually the same day my annies were found, May 25, 2011!! How ironic huh? 10 days after this, I got my new pipeline.

I'm not sure why they would want to put a shunt in first?? Is his annie leaking?? Was he put on the plavix/aspirin regimen? Has his surgery been scheduled? Please give your brother my best and let him know my thoughts and prayers are with him and his family.

Anything else I can do to alleviate the anxiety, please let me know.

Linda

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#5

Hi Cindy,
As Linda said, I had a pipeline stent in January, 2010 in Milan, Italy.
The Ped ( pipeline embolization device ) first get CE approval and thereafter the Fda approval.
My next control via Rm will be next monday, September , 12, let’s cross the finger !
I had a rupture annie in February, 2009 first coiled and 1 year later I took the Ped.
I’m feell well,and fully recovered.
If you need more info on the peed stent let me know.
Giovanni

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#6

Thank you for your reply. I am glad that you are feeling well and fully recovered!! That is very encourageing news! I won't cross my fingers but I will pray for your continued wellness and recovery! I can only imagine what you have must have been through! My brother doesn't have the internet and pretty much does not want it so thats why I am on this web site.Again thank you so very much for sharing your story, me and my family appreciate it so much. Let me know how your Rm went on Monday!

Cindy

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#7

Cindy, prayers for your brother's best treatment.

It is rewarding to have input from Linda and Giovanni. Sometime back, when the Pipeline was brand new, we had a gentleman who had the treatment; and, I pray that some day he will let us know how he is. My mind blanks on name(s); I pray his recovery was as successful as Lind and Giovanni.

Some other, a woman, had some special early testing done, that reflected her allergic, or potential allergic reaction... I hope she still gets on-line and will provide more info.

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#8

Hi, my name is tanya and i am scheduled to have the PED for a 2.5mmx4mm right internal carotid artery aneurysm. I would love to know what to expect after the procedure and if you have any complications now. Thank you for your time.

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#9

Hi Linda my doctor is jabbour and I am having pipeline stent done next week for 2.8 mm annie i am so scared because I get really bad migraines and lose vision so I am hoping this does not make it worse can you tell me about your recovery and so forth

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#10

Hi @Cfreitag

I’m also due to have the PED in about three weeks. For what it’s worth, I asked my Doc about headaches, dizziness, and other side effects of a PED. His response was that in patients experiencing this, it may have been caused by something other than the device. He told me not to focus on that as a likely outcome. So instead I’m trying to focus on things that are within my “circle of influence” rather than my “circle of concern”. I’m working on my physical and mental preparation by reducing my stress level through yoga and getting a good amount of sleep.

Take care, and all the best for your procedure.

Jim

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#11

Hi, has anyone with pipeline stents from cerebral aneurysms seen chiropractors since their surgery?
I have only really needed to go twice, but did not let him touch my kneck. Anyone know any info on this topic ?

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#12

Is every stent a pipeline stent? My wife had coils initially when her case was a matter of survival after the rupture. At six months she had additional coiling and a stent placed. That would be five years ago now. She does see a chiropractor occasionally, and I think he treats her like he would anyone else. We trust him because in addition to being a chiropractor he has specialized in brain issues and has been very helpful. I would not call him a rough chiropractor–he is gentle, but he can be forceful when needed. Yes, he does work on her neck if needed.

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#13

Thanks for the feedback. I had a pipeline in 2013 and just wanted to know. I have had great results
With my surgery and recovery. I feel it’s no longer an issue for me, but it was such an ordeal. I sometimes wonder if others have made any lifestyle changes. I do have a great doc I can email questions if need be.

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#14

I am betting maybe your wife does have a pipeline and was one of the very very first people to get one.

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#15

I have 4 Annie’s in 2016 and have several pipeline stents in place to fixed them. My recovery was good but I have balance issues sometimes. Never had headaches and still don’t. Loved my dr and the people that took care of me at NY Presbyterian Cornell. I do get silent migraines at times but mostly if I’m stressed. No pain just zig zag lines on right side of vision. Glad to see others stories so I can learn from you.

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#16

I am 71, in Missouri and had a Pipeline stent end of Feb. this year. My anni was 12mm across & the neck was 9mm. I had not rupture. I just last week went for my 6mo arteriogram check… At almost 7 mo. Dr. Said everything looks ok. So, I feel blessed. We all are if were alive. Headaches are part of this. Our brains are not happy with all the new metal & all the messing around with it due to surgery etc. So eventually on its own time there will be some acceptance of its new friend. Do not give up… Im here for support. Make sure your nutritional test look good & if not, correct any deficits. Take care. Ann

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#17

Hi Ann, were you taken off the plavix? Where was your annie located? Mine is behind my right eye. Had two pipelines put in this past May.

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#18

I just had my second pipeline stent put in 18 days ago. Trying to get a handle on the headaches but mostly feeling a bit stronger everyday. Had first pipeline put in in 2011. The 21st at OHSU. Not all stents are pipelines. A Pipeline is a double lined stent approved in 2011 I believe. Older stents were intended to limit blood supply to the aneurysm. The pipeline is intended to cut off the blood supply to the aneurysm so it can dry up and become absorbed. Then it is basically gone or called cured. Some are not completely cured. My first one is totally cured. These last 2 are in the process. I have one more to go. My aneurysms are believed to be genetic ( My brother had one rupture in 2003.) . And I have multiples. My last 2 aneurysms will be tested in March 2017 to see if they are also cured. Then 1 more to go. Yes, I agree! At 65 I think trying to stay positive and active are the 2 most important pieces of your recovery. So I’m hanging in there. Hope you all are as well.

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#19

Has anyone had 2 pipeline devices placed in the same spot? After my first pipeline didn’t cure my aneurysm they placed a second inside the first. I asked how many people had 2 and they stated it was very rare. I didn’t have any complications from the surgeries I do experience pressure near the sight of the aneurysm and sometime pain. Has anyone had these symptoms and know if I should be concerned?
I didn’t have a large aneurysm but based on the location (on my carotid and ophthalmic) treating it with clipping would have been difficult and coiling could have cut off bliss flow to my eye altogether.

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#20

My annie, in the same location was 12mm. They put in two pipeline flex stents in May of 2016. I feel occasional cramping above and behind my right eye. Twice I’ve felt this sharp pain at the inner corner of my eye. The day after surgery and about a month ago. Makes me wonder if the stent(s) moved? I get my 6 month check on November 9th and hoping to get off the plavix. I used to get these zapping, shooting pains through my eye. I was told it could be the annie bumping into the optic nerve? But I’ve had that happen in the last month. Praying it isn’t still there…

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