Pipeline Embolization Device - My Story

Hi I am new here and am about 10 weeks post op for an un-ruptured 9mm right-side, internal carotid artery @ ophthalmic artery aneurysm. My story began when I went to the hospital on May 25, 2011 with a pain running down my left arm -- I thought I was having a heart attack! Fortunate for me, I wasn’t -- but again fortunate for me, the doctors discovered two aneurysms in my brain, one on the right side (9 mm) and one on the left side (2mm), both in the same ICA @ ophthalmic artery.

Once the doctors discovered my annies, on May 26, 2011 I was immediately transferred via ambulance to Thomas Jefferson Hospital for Neuroscience in Philadelphia for treatment. My surgical team, lead by Pascal Jabbour, M.D., got right to work. Dr. Jabbour is the Cerebrovascular, Interventional Neurosurgeon that saved my life! I was scheduled the next morning for an angiogram to be done and a possible coiling if Dr. Jabbour was able to do so. Surprise me when I awoke from the angio on May 27, 2011, to find that my annie was unable to be coiled due to the location and size of the neck.

Once I was somewhat cognizant and awake from the anesthesia, Dr. Jabbour then told my family and I about a brand new procedure that had recently been approved for use in the US by the FDA called a Pipeline Embolization Device, or PED as it is known. I was sent home that evening, and for the next 10 days had to take a regimen of plavix and 81 mg aspirin for 10 days before they could attempt to put this stent into my brain.

I immediately quit smoking (I smoked about a half pack to a pack a day since I was about 15 years old) and have not touched a cigarette since – no patches, no pills, no electronic cigarette. The best nicotine diversion for me is repeating my doc’s words ... “the next drag on a cigarette could be your last”. That has kept me smoke free all this time. Although there are days when I feel like I could beat someone over the head for a cigarette, I have not done so!! I really did enjoy my cigarettes!! LOL

Anyway, ten days later, on June 8, 2011 I was taken into surgery and 2 pipeline stents (they call it telescoping when there are more than one inserted) were put into a catheter and driven up the femoral artery in my groin and into the internal carotid artery @ the ophthalmic artery. Waaahhhh laaaahhhh blood flow to the annie diverted, my life saved! The doctor tells me I will be on plavix for about 6 months, and more than likely will continue with the 81 mg aspirin for the rest of my life. I have a follow up angio and MRA in December to check the PED and to check the other annie, and hopefully like most who were part of the PED clinical trials, my annie will be gone and the other one will not have grown.

I am now almost 10 weeks post op. I have returned to work and somewhat back to the existence I had before what I lovingly refer to as my pre-annie days. Because I still have an untouched annie that I must live with, I have good days and bad days where I wonder if that lil bugger in my head will decide to rupture or keep itself intact the way it is. I try hard every day not to let it rule my life, but sometimes it’s really hard knowing you have a ticking time bomb in your head which could explode at any moment! I guess I should feel comforted when they tell me that most likely it is too small to rupture, but I often wonder if the doctors would feel the same if they had the lil bugger in their brains????? Also, I often wonder if the first persons to have received a clipping or coiling felt the same way I do, being that the PED is so new and not much known about it. I don’t know. Sometimes I think I let my mind wander too much :).

Any hoo, I am curious is there anyone out there that has either (1) heard of or knows of anyone to have this pipeline and/or (2) still deals day to day with an annie which is not "ripe" for treatment. I am curious to the kinds of emotional and physical feelings of persons in similar situations as myself. Any information would be greatly appreciated.

BTW I am a 50 year old woman whose older sister had a clipping done a year and a half ago of the anterior communicating artery and whose grandmother and great uncle both died from aneurysms. I guess you could say it runs in the family! Not the genetics I was hoping for!

Thanks for listening to my story. Sometimes you just need to get things off your chest and it’s nice knowing that there are people out there that actually know and feel the same way you do.

Linda
1 Like

Linda, welcome; I so hope you will continue to share more here...so far, PED sounds like a good device...

There was a man (name blanking) some months back who had one... wish he had given us his results. He may have it and I missed it....I get on/off-site because my thoughts are like vitamins...one-a-day.

Some research I did before was its approved for a limited location...if it works well, likely they can expand that.

Did you have coils implanted as well?

Did your neuros talk about an early(ier) implant on your other aneurysm...before it grows?

i have no expertise...laughingly say my personal opinion is non-degreed / non-licensed... it just seems logical to not let one grow...

Again, welcome...

Pat

One of our members, Giovanni had this proceedure, look him up. I know how scarey all of this is, rest, be kind to yourself, and know that I care about what you are going through. May God bless.

Hi Linda

I am sooo new here, just diagnosed on August 4th in Boston, after MRI, MRA, then a CT Angio, met w/Dr. Christopher Oglivy at MGH, it is 9mm and behind the r carotid artery. He wants to do the PED, in Buffalo, where they are doing it as like at Jefferson, it is not in Boston yet. I just found this group today and I am really freaked out. I am wondering about after care, I am widowed and live w/my dogs, will I be able to function, I am really obsessing about that, and just a million other questions. Can someone, help, please!! Tks - Oh, and also, I am mom of kevin, who is an 11 year survivor of a malignant brain tumor, chemo, rad, surgery, etc, at MGH also, its been enough now.............grrrrrr

Hi Linda and Welcome to BAF...!

Thank you so much for sharing your story...!

My annie was coiled...so I donot know much about pipeline...

I do know much about the emotional and physical feelings from being a "survivor" of an annie...and one that they are now watching...I find this is a bit of a journey...but mostly, there are many "new normals" ... and those "new normals" I am learning to like and accept...feeling blessed everyday to be alive...this site and these people will help you greatly...

From one Survivor to another...You are so much tougher then you know...keep Healing...Colleen

Cynthia,

Welcome and I am sorry you have to be here, but glad that we've met and I can help ease your tension over the PED. Rest assured, I, as well as everyone here, know exactly how scared you are and everything that is going through your mind. Anyone just finding out that they have an annie is scared to death. Deep breaths!

I am going to try and put your mind at ease. The PED after care was a breeze!!! The only limitations I had was driving -- I could not for 2 weeks, and working -- I could not for 2 weeks. I was also placed on a 5lb weight restriction for about a month, and no strenuous activities (vacuuming, picking up anything heavy, etc). Once I had the follow up with my surgeon, back to normal activities. As far as being able to function, within 2 weeks I felt "normal" physically. Emotionally, I must say, was a different story. As the finding of my annies was done due to another potential emergency, my first angio and attempt at coiling was done within 2 days. No time to think. 10 days later, I had the PED surgery. I think my best friend said it best, that i was very "clinical" when I spoke of my upcoming surgery. After the surgery, I was tired, and still sometimes become tired.. and I mean bone tired, but I understand that is a normal reaction after someone has played in your brain! I feel blessed that I was able to have the PED, as opposed to having to be clipped, due to the invasiveness of that procedure. I do have an older sister who had a clipping a year and a half ago so I know what that procedure entails.

I understand you being freaked and believe me, I am more freaked now, some 10 weeks post op, knowing that I survived and am still alive thanks to my wonderful doctors and the PED which saved my life. I have found that everyone reacts differently. I have also found that if you surround yourself with a wonderful support group, be it family, friends or your cyber brain buddies as I like to call all the people I have met in different support groups, you will feel stronger and less freaked when arming yourself with all the love and prayers you can.

Just remember one thing for after your surgery. Let your brain and body heal and do not force anything. There is a great "letter from your brain" that I suggest you read after you have your surgery.

Please feel free to call on me any time you feel freaked. I will be here to offer support and answer any questions you have regarding the PED.

My thoughts and prayers are with you

Linda

Pat, thank you for your kind words and the warm welcome to BAF.

To answer your question, my annie was too wide necked, so the attempt at coiling failed the first time around. That is why my doctor said I was the perfect candidate for the PED. Wide necked annie in the ICA near the ophthalmic artery -- exactly what the PED was invented for!

I have spoken at length with the neuro several times and since the other annie is 2 mm, he feels that attempting to do anything at this point is more dangerous than just leaving it alone and watching. He has assured me that since I did quit smoking, I have greatly reduced the chance of that annie growing bigger, which is a big plus in my book. We will revisit it again in December when I have the follow up angio and MRA and see if it has grown any. I will keep my fingers crossed!!

Linda

Kathy, Thanks so much for the kind words. I did meet Giovanni on another site and we have spoken. It seems as though the PED was being used outside the US since 2009 so I have met many people outside the US to have gone though this procedure.

Thanks again for the blessing and caring you have extended. Means a great deal to me

Best wishes,

Linda

Colleen,

Your words are an inspiration!! Thank you for the warm welcome to BAF!

It's funny but I never really thought of myself as an annie "survivor" until about 3 weeks after my surgery when I had an emotional breakdown. That is when it all finally caught up to me and someone said ... remember you just had brain surgery! I think because I didn't have any scar that could be seen, that I didn't feel like I belonged to such distinguished group known as a a survivor! Silly me!!!!! There was still someone in my brain, fixing me, and I made it out alive -- that qualified me as a survivor! I am glad to have found this site, from what I have been reading everyone is most supportive and like I told Cynthia above, it is crucial to surround yourself with supportive people. I thank God every day that I have a great husband and supportive family who helped me through this scarey nightmare. And now, I have BAF to help me deal.

I will keep healing, and please keep praying for this new "survivor".

Linda

Hi Linda,

You can get more info on the PED on Fda web site / medical device.
Take care,
Giovanni