I am about to undergo the Pipeline Embolization procedure this Friday, and can't tell you how much it means to be able to read about other people's success stories. All you can find on Google are studies where they tend to only discuss the cases that went wrong, instead of the vast majority that went fine. Studies are great for building knowledge, but not necessarily pre-procedure morale....
I had the coiling procedure done in August 2013 on a 9mm aneurysm that had been bleeding for a week (complete with "worst headache ever," neck and back pain, and confusion) but went undiscovered despite extensive testing. I even went back to work. I'm sure that an aneurysm was the last thing that they expected to find in the brain of an otherwise completely healthy and active 27 year old woman with zero risk factors, but luckily they found it after my second trip to the emergency room. Despite having suffered an SAH, I was back at work 2 weeks after surgery and completely asymptomatic within 30 days. I was running daily 5Ks 3 months later. Flash forward to July 2014: my follow up MRI revealed that my aneurysm has grown back to about 3mm (basically tripled in size) since January. I am choosing to be proactive and do the PED procedure now, while the aneurysm is still small and relatively manageable, to avoid the chance of a re-bleed.
While I believe I am making the right decision, and I know I am in the hands of wonderful doctors (My doctor has done over 100 of these procedures and has a 99% success rate, 100% survival rate) it is difficult to remain positive when faced with some of the unknowns. I know that right now I feel perfectly fine, with absolutely no symptoms. I am also planning to get married at the end of September. It is difficult to put all of the good things I have in my life right now on the line, even though this has the potential to be a minimally invasive and permanent fix. I plan to rest and be very patient with my recovery, but it's just hard to believe that I could be so lucky twice.
While I have a wonderfully supportive fiance, family, and friends, it has been invaluable to me to be able to hear from other people who have been through similar experiences. If you have any stories, experiences, tips, or suggestions to share, I would be so grateful.
Hi Caroline and welcome to the group. Seems like you’ve got everything under control since you’ve been down this path having had the coiling procedure. Rest assured that the PED is a cake walk compared to a craniotomy!
As far as the PED goes, I had my PED just about a month after the FDA approved its use here in the USA. I had no one to turn to who had this surgery. I had to trust my surgeon, who I had just met, literally with my life! Hard to believe that was over 3 years ago. The reason we had to do the PED was because an attempt at coiling failed because of the wide neck of my annie. 10 days later, overnight stay in ICU (where you get no sleep since you can’t move and they’re checking you every 15 mins), home in my own bed by noon the next day.
I giggled a little to myself when I read what you said about being lucky twice because my family feels lucky times 4 because my older sister had 2 annies, and her daughter (19 years old at the time of discovery) has annies, my father has multiple AVMs and and I’ve had two annies and we were all so lucky to have had them found before rupture. Talk about being lucky multiple times!
Unfortunately my paternal grandmother and her brother both died from their annies, but that was over 35 years ago, when hardly anything was known about these lil buggers that take up residence in our brains!
But I digress, all of our annies were found incidentally (that’s what I call lucky!) without the support and love from the members of BAF, I don’t know how I would have survived. Even though I have a loving family and friends who have been through this often, no one really knows what we go through other than another survivor.
I’ll keep you in my prayers for a successful surgery on Friday. Please keep us posted on your recovery!
Just an update: my procedure went as well as it could possibly have gone. Apparently my aneurysm completely occluded during the surgery! I was released from the hospital the next day, and have been resting at home. I am still easily fatigued, but am making huge progress each day. The only side effect I have noticed is a very slight, dull ache behind my left eye (right where the aneurysm was located). It gets worse when I am tired, so I am taking rest very seriously. I think that this is common after this type of procedure, and I expect that it will probably fade with time. I'm still being very cautious, as apparently there is a 30 day window where either clots or hemmorhage can occur, though I've been told by my doctors that my risk profile is very low. Thank you for all of your stories and support; I hope to continue to heal well in time for my wedding!