My brother passed away in 2009 from a ruptured aneurysm, in the circle of willis, in 2010 I was experiencing an unusual amount of headaches so I was examined and sent for an MRA and within hours was contacted by my primary physician and sent for a CAT scan where they found an aneurysm in my left ICA. I have been on the every 6 month follow up track until July 2012 when my neurosurgeon suggested that I stop putting off having an angiogram, scheduled for Aug 9, 2012 (and I'm completely freaked out). I have finally decided to stop being a coward and let them get a closer look, but given the location, size and shape (2mmx5mm - speed bump design) he is suggesting that I have a relatively new procedure done... The "Pipeline Flow" stent. So far here in Massachusetts there have only been 21 of these procedures done, and earlier studies show results a 1 in 26 mortality rate (John Hopkins research study) Not sure how I feel about this procedure, or any procedure for that matter, its not like we have any margin or error... any thoughts out there?
Hi Kathleen,
I received the PED in January,2010 in Italy ( My rupture was in february,2009 , coiled ).
You can get more info on the PED in the Group area , Pipeline Embolization Device Group, just ask to reach the group.
giovanni
Giovanni...
are you still experiencing side effect or has things begun to go back to normal?
Hi,
I was very lucky : up to know I do not have any side effect.
I stopped Plavix and Aspirin after 6 months following Ped implantation.
Every year I have my control , next will be on september,10 ( RM scan ).
If you want to get more info on the ped, www.fda.gov / medical device.
If you need more info, just let me know.
Take care,giovanni
oh Kathleen so sorry to read about your brothers passing -no- you were not a coward considering what you just experienced - you are very very brave. We'll be praying for strength & fortitude and of course a successful operation & quick recovery-thank you so much for sharing-ps-i would stay away from the negative internet stuff-it may be out dated- maybe others on here can shed more "light" on this since i was sah emergency & surely unqualified to comment on the PED-good luck !
I also put off have an angiogram and ultimately had the angiogram done on day 1 at the hospital and pipeline embolization device (PED) inserted on day 2 during April of this year. Going to have a follow-up angiogram done next week.
I also questioned my neurosurgeon's use of the PED. In the end I went for it because I had confidence in his experience. Since I made the decision and had the procedure I haven't had any further doubts or fears. My recovery went so smoothly with absolutely no neurological problems.
The decision is difficult but you won't question it afterwards. The anxiety that you are living with is probably affecting you in significant ways. Go for it!
Did you have any adverse reactions to the angiogram dye?
Hi Kathleen and welcome to BAF,First know that what you are feeling is perfectly normal; being scared is not an easy thing to overcome. Please know that you will be fine with the angio, I've had 3 and luckily had no problems with any. My first angio was after my annies were found (had two, one 9mm in the right ICA @the ophthalmic artery and a 3mm in the left ICA @the ophthalmic artery which is being watched due to its small size). My 9mm was stented with the Pipeline on June 8, 2011. I just celebrated my 1st "annie"versary. I see that you have joined our PED Group and hope that you will read the many postings that we have there, including articles and information about the PED from those of us who have gone through the surgery. We started last year with 2 members, myself and Giovanni, and have grown to almost 60 in just a year's time! So that gives you an idea of how prevalent the Pipeline surgery is becoming.
The worst part of the angio is the lying around after it's completed. The first time I had to lie still for 6 hours, the 2nd time, was 12 hours (that was after my pipeline was put in and I was in ICU) and the 3rd time was just about 4 hours.
My surgery was done at 11:00 am and I was home in my own bed by noon the next day. Back to work 3 weeks later! It was a breeze compared to the more invasive surgeries.
Please know that we will keep you in our thoughts and prayers and please keep us posted. You'll do fine!
Best wishes,
Linda
Hi Kathleen...you got some great advice above me...I was coiled, not PED...so I have no experience in the procedure...I can tell you...that many have had PED and have done very well...
It is a no wonder that you are scared since your brother passed away from a rupture, but this is the good thing...they are finding the aneurysm before rupture...
Sending you a Hug...sounds like you need one...~ Colleen
Linda...
that is very reassuring news, my annie is only 2mm (deep) by 5mm (long) - and reading about some of the other members measurements I'm thrilled to say that! I am happy to hear that after your surgery you were back to life in less than a month. I can't imagine not being on the go, so the thoughts of not being able to do the things I love to do was awful (swimming, suba-diving, riding horses, etc...) Thanks for your insights they were helpful - especially to know that you recovered with no issues from your 1st angiogram, I've heard so much about how the dye made people sick.
Thanks again... and congrats on your 1st "annie'versary!!
Thanks Colleen, I'm so glad I was invited to this site...it is a great wealth of information.
Hi Kathleen,
I received the PED On May 15th 2012. I had lived with my annie for 5 years. To big and to wide of a neck for coiling or clipping. When my nuerosurgeon told me about the PED i was thrilled!! Then the fear settled in. The anxiety and fear are worse than the surgery. I had it done at 8am on Tuesday and was home the next afternoon. I did have a dull headache for the first two weeks after the surgery....but none at all since!! I did tire easily for the first month, but have been working since a week after the surgery. I work in a warehouse and I'm on my feet all day, but it was do-able. They did an MRI three days after the surgery and it was clotted already. Now the bugger just needs to fade away. I am doing really well! My stomach is not fond of the aspirin.....but I'd rather have a little sensitive belly than the alternative. It is scary and overwhelming at times, I know, but there are alot of us here who completely understand how you are feeling. We are here for support and help :)
Kelly