Hello I don’t get on here much, between work, kids and being tired all the time, but I just had my 6 month angiogram for PED. The aneurysm is not fully occluded. I will go in 3 months and check again. The Dr. said if it doesn’t work they would add another pipeline. Has this happened to anyone else and what was the outcome? Any info. would be greatly appreciated. Thanks for having this site, I don’t know where else to turn.
I know that there are many in our PED Group who did not had their annies fully occluded at the 6 month mark. DId you just have 1 PED put in on the first try? I had 2 PEDs, which they call telescoped, because the neck of my annie was so wide. I remember someone, can't say for sure who it was, did have to go back and had more PEDs placed. Hopefully they will see this and respond.
Please keep us posted on your progress!
Linda
Thank you for your response. I only had 1 PED, but the aneurysm was shaped differently and I guess that is why he thinks it is slower to occlude. I just don’t want to have the surgery again. The last one, I went back to work the next week (3rd grade teacher) and this has been the toughest year of my career. Thank you for your help with this, it makes me feel better knowing others took longer than 6 months.
Michelle,
You will be in my prayers! I can't imagine how scary it is to know the healing didn't deliver! My 6 months mark will be this coming July. Remember you are alive and there's always hope for a better outcome. Your situation is not nothing new for the surgeons. God has set them to help us. I am sure they will take care of it. You need to anchor yourself in trusting God and your surgeon, if you don't, you will live terribly with no peace. I know that it is easier said than done, but it is possible...
I am a two-time PED surgery patient, but in my case I can't have an occluded annie, or at least one that "disappears". I have coils behind my PEDs from my first surgery because it was in the basilar artery, high volume of blood flow, and wide necked and giant to boot. It was too risky to rely solely on the PED. I had 6 telescoped together. My second surgery I had two more PED telescoped in because there was still blood flow into the annie, though small. Surgery #1, terribly hard on me. Surgery #2, MUCH easier. I don't think I'm helping much, but hey, you've now heard of someone that had to have a second PED surgery on the same annie!
Mine was a wideneck, and it was occluded at 6 months, but Michelle, I rested. I didnt bend over. I stayed in bed for two full weeks. Then went away for a month to get away from everyone and rested for another month. Everyone seems to rush back to work. I think brain surgery is more serious than the drs. are leading us to believe as far as healing time. Even after my angios, I am IN BED for a week. Perhaps you need to slow down, so you can pull this together. no bending.Just my thoughts, from a person who is about to loose their home from resting, but hoping it will sell soon. good luck. I do know that it is normal to not be occluded in 6 months.
Thank you for the replies. I feel better knowing it can be done. Denise- I know I need to slow down, but I carry the health insurance and need it more than ever right now. I am hoping summer vacation will be a time to take it easy, and get back to my old self. I agree with you that the dr.'s seem to believe this should be a short recovery time, hopefully they will learn more through everyone’s experiences. Thank you all for the kind words and info. I wish and pray for you all to get positive results. I think the most difficult part is the ‘waiting’ game.
I had my 1 year angio in early Feb. and my 14 mm aneurysm had not fully occluded. Like you, I wondered what might happen when I got the same news at 6 months. I had 2 pipelines put in the first time. My doctor thinks mine will never fully occlude, but doesn't think I will ever need additional treatment. The amount left is very, very small. I tend to think of it as something similar to when a person loses a lot of weight and then has loose skin afterwards. My aneurysm was large and very oddly shaped with many bumps all over; I think it has shrunk as much as it can and I am satisfied with that. I feel much better knowing the PED is in there and I now only have a microscopic bump compared to a large and dangerous aneurysm.
Hearing from all the folk about the terrible pain they had with angiogram? Think you had Dr. Coon. Was there lots of pain or does he use general?
Lily I had NO pain during my angiograms, just wierdness. They say they give you something to relax you, but I am thinking NOT. I have talked his associate into an adivan, but not Dr. Coon. I am so medicated for my iodine allergy that they may relax me(well the benedryl anyway). They are so kind and gentle in the operating room, it makes you feel cared for and Dr. Coon is such a dreamboat!lol.There was NO pain, and I was wide awake.Lily for the PED procedure you get general and are out for several hours.
At my 6 month, mine was not fully occluded. At my one year, the doc did not expect mine to be gone, but it was. Whew!
Michelle how big was your aneurysm. Did they say why ? That is very depressing but I know that sometimes it does take longer than 6 months. Praying you will hear good news with the next angiogram. Lucy
I feel the same way about my giant anuerysm, it shrunk 95%. I go back February for my yearly check up. I think it was so big, its like a balloon, once you blow a balloon up big it never goes back to its original shape. I've been under extreme pressure that I can hardly do anything about. I feel on the side of the ped, a sensation it doesn't really hurt just something maybe slightly burning, or a needle like sensation. I'm tired more than not though. Could be my age, I never thought I'd admit that!!!! lol anyway, I'll find out soon enough. thanks guys for all you comments.
My aneurysm did not fully close up after 13 months, so the doctor is putting another PED inside the current one this Thursday. I am hoping this time the aneurysm will completly close up. This will be my 3rd PED procedure. The first one failed. After trying 5 devices and 4 hours, the doctors could not get it to work. I went back one month later and they were able to place the PED. I am not looking forward to another procedure, but will be happy if this works. I know I am in good hands with the doctors in Kansas City and of course my #1 supporter, God. I hope your aneurysm closed up at the 9 month check-up.
Hi simplelife4ever and welcome to the group!
I’m sorry to hear that you had a problem with your first two procedures. Please know that I also have two PEDs that are telescoped one inside the other and lengthened in order to cover my large necked annie. Hopefully the third placement of the PED will be more successful. please keep us posted when the surgery will happen.
Best wishes,
Linda
Hello Simplelife, I am so sorry for all you have gone through. I don’t know all the details as to why your surgeon has tried 5 devices, but I believe any skilled surgeon should know before hand what will work or not before performing surgery it seems like “trial and error” which its not good. I would suggest you seek a second opinion. I wish you the best!!!
I'm a telescoped PED patient - I keep seeing old posts and none of them are consistent with the details but today I believe that I have 6 or 8 telescoped together, between two surgeries. My first surgery they implanted some number (2 or 4), but after looking at the pictures they saw that the end wasn't inside the artery but rather flapping about inside the annie so they wheeled me back for repeat surgery right away (like I was barely waking up and then they took me back again) and telescoped a couple more so it would be stable from one end of the annie to the other. They had a plan going in to rebuild the artery on the anterior wall of the annie, but the PED wouldn't bend and/or meet up the other end of the artery so they ended up following the exterior wall of the annie with the PED (and the ones they telescoped together weren't long enough and that's when they added more). And then, at the 3 month follow up and the 6 month follow up angios there was a visible leak so I had another surgery and added yet more PED onto the length. The follow up from that was this past June, and the leak was largely diminished. My next angio is on the 30th of this month, so we'll see where I'm at! PED are life saving devices, but they aren't foolproof, and sometimes they don't go smoothly, as with any devices. Sometimes the anatomy of the annie is difficult to navigate. And this is still a relatively new device, so the experience of the doctor can also be a factor (my doc had done plenty, I am confident I was just a difficult case). P.S. My "second" surgery was so much easier than the first. I am happy you finally had some success in getting the PED, and I hope your next surgery is the easiest one yet. You are right too, your #1 supporter is ALWAYS there with you!
Mine were difficult, too. Took two tries on the giant one but had follow up in August and all was good.
Mine took 18 months; hang in there! How big is the space left? Even when I had a small bump, my doctor wasn't concerned and said some can take up to two years. I also learned that some people have to get off of the Plavix before the annie will fully occlude. Yours will get there too!
Heidi
Just found out I need to have a second PED, I am about 13 months post placement and mine is 85% percent resolved. Any recent experiences with a a second placement would be helpful.