Hi new member!

My name is Valerie. My husband was diagnosed with an unruly red large anneurism two weeks ago. After undergoing an angiogram he has been told he is a good candidate for the PED device. We are meeting with a neuro specializing in this Monday to further discuss. I’m quite scared. We have four kids (3 girls 6, 4, and 2, and a baby boy due in December) and this was a total life curve. I’m trying to wrap y brain around how a healthy 29 year old man can get struck with this, but thankful we found it instead of it finding us. Looking for info and stories about the procedure, and strength from fellow members affected.

Xoxo

That should be a large fusiform anneurism not unruly red :slight_smile:

Anyone had the procedure done at Barnes Jewish Hospital in St. Louis?

Hi Valarie! I liked the "unruly red" but I'm a poet. ;) If you've not found any info about the procedure, I found a great video to show what happens here: http://www.youtube.com/watch?v=2oksKBwYAKs There's also a lot of great info on the main BAF Website here: http://www.bafound.org/ I know about the life curve -- I'm 42, and we tried to have a baby for ten years and finally had a baby boy in 2009 (he's amazing!), and this summer I was diagnosed with an aneurysm. I had mine treated at Johns Hopkins in Baltimore.

A lot of people do extremely well with the PED and have no further complications. Someone quite recently on the forum went back to work 6 days after surgery. I took a bit longer but had other things going on (trigeminal and/or occipital neuralgia, which is how they stumbled across the aneurysm to begin with). I had surgery on July 31st and went back to work on October 4th, but then, I'm a veteran teacher and had some time I could take as well. It's been a challenge with the little guy, but my husband's a trooper! He's a stay at home dad with a web design business. Our parents are all pretty far away, so it has proved tiring at times, but lots of friends helped when we needed it. We've since decided that parenting is a young person's sport. lol

Generally what happens is an angiogram -- not sure if your hubby's had one yet. They go through the femeral artery in the inside of your thigh in with a small turkey baster (kidding... it's more a long ass tube), and squirt dye into your brain to see how it flows, while your in "twilight" sleep -- which means your awake but high as hell and able to talk. While this is going on, you're in basically an open MRI and they take all these fabulous ink splotch photos of you that you can later show all your friends. I'm thinking of having mine framed. ;) Following the procedure they put ungodly pressure on your thigh to get it to stop bleeding. Then they put a bandaid on it and tell you that you will stink for 24 hours because they won't let you shower until then, and you lay flat for an hour, then up half way for another hour then completely sitting up, and you can eat really bad hospital food and finally pee. After this, you only have a little cut on your thigh, and a see through bandaid.

Sometime before the surgery they put you on plavix and aspirin for 10-12 days to thin your blood for the procedure.

The surgery is much the same, except they take a guide wire and implant the PED along the artery, blocking off the aneurysm so that it gets no more fresh blood. Over time it shrinks. You are asleep for this one, with the anesthesiologist and the face mask, breathe deeply, whole nine yards. Then they send you to ICU. And they keep you flat for much longer, then they pull out the plug they have in your artery in your leg, and put ungodly pressure on your leg to get it to stop bleeding, and they let you sit up much more slowly over a longer period of time, and usually if all goes well, they send you home within 24 hours of having the procedure completed.

And then after the surgery, your husband will probably be taking Plavix and aspirin for a long while, and have a 6 month follow up angiogram, and probably a 9 month and a 12 month to check how it's shrinking. Most people have headaches following, but some don't at all, and some take Tylenol (they're strict about NO ibprofen which is my drug of choice dammit because it is a blood thinner as well), and some take some stronger drugs if needed (migraine medications usually).

It's scary, and it's okay to be scared. No one knows what really causes aneurysms to occur. Some are born with them and they grow over time, some develop them from trauma, some have family links... they think. Smoking may or may not have something to do with it. But this place rocks, so keep us posted, and feel free to dig into our stories, and questions, and ask anything. Hopkins and the Mayo clinic have now done over 100 insertions each... and they have strong track records. Ask how many insertions the surgeon has done -- that's very important. Find out the track record for the hospital. And talk to your parents, your friends, and your families and see how they can help support you. And hang in there.

Hugs and prayers headed your way!

Tara

Tara,

Thank you so much for responding! He has had the angio so I feel a bit better in knowing at least the way they go about getting in there. His started with headaches and luckily he had a good dr that advised he go for an MRI and voila, oct 1 life kind of turned upside down.

Your experience gives me faith in this. His aneurism was not a good candidate for much other than a craniotomy with artery bypass otherwise, or let it sit there and watch and hope that it doesn’t rupture (which scares the hell out of me too!) Brent is in the Airforce. We just moved here in may. I feel like everything happens for a reason to put us so close to a hospital that even does this procedure. He will be going to Barnes Jewish in St. Louis.

I’m so happy to have found this website. It really helps hearing from others who have been there done that! Eases my pregnant brain!

Hi Valerie,

When is he scheduled to get the procedure? How large is the aneruysm? I had the opportunity to decide between three options, the PED, coiling and a craniotomy. I decided on the PED due to fast recovery time v/s a craniotomy, and I didn't want to worry about having to have my aneurysm recoiled at another point. My surgeon is one of a few that travel the country training other doctors to do the procedure since the device is so new. I totally agree that everything happens for a reason. I was so lucky to have a TIA and get into Hopkins so quickly from my small town. It was also incredible that I had my son via c-section, and that I was scheduled to get a nerve block shot last month to help my neuralgia from a pain clinic that was using the strain of medication that is causing the meningitis outbreak -- couldn't get it because I was on plavix and aspirin for the PED. Everything happens for a reason, even though we might not understand it at the time it happens.

This website rocks and is a wealth of information.

Hang in there!

Tara

Hi.

We are meetin with the surgeon that does the PED Monday so I’m sure a surgery date will be discussed then. His is over a cm by a cm in size and considered large. Not a candidate for just coiling with its position and characteristics, so our options are craniotomy or the PED basically.

It makes me extra nervous that our 4th kiddo is due December 28 so lots going on other than this too. It’s our first little boy. I know husband is looking so forward to it and hopefully we can have this done before and he’s recovering nicely by the time out little Liam is born.

Thanks for responding! Hope your doing great!
Valerie