I am 4 years post-rupture of a 9.7mm ani of the posterior communicating artery. At the conclusion of the first follow-up arteriogram, my doctor wanted to do another surgery to add a stent over the neck which was not totally occluded, though nearly so. The stent he wanted to use was part of a research study, but I was found to be an unsuitable candidate by the company sponsoring the study because of the curviness of my artery. The doctor said he would use a different type of stent.
No one had ever mentioned a stent to me while I was in the hospital for a month, so this conversation was an unwelcome surprise. This upset me so much that I got subsequent follow-ups at a different hospital & doctor. When I asked this new doctor if a stent was necessary, he said it was up to me. He said some people would absolutely have to have the stent to stop worrying about the coiled ani, while others would not like to have more invasive procedures done to their brains.
I would love to hear what your doctors have said regarding this matter. Right now I am still not wanting a stent because of the risks.
I’ve had a very good recovery with mostly just annoying side-effects, like light sensitivity, sound sensitivity, chaos sensitivity and some hearing loss. I don’t want to mess up what seems to be a miraculous recovery for a 64 year-old patient who entered the hospital unconscious and not breathing.
Thank you for reading this and I will appreciate your responses so much.
Jackie
I had to have 2 stents because my annie (unruptured) was wide necked. That was in Dec. 2018. So far, so good. Hope all goes well with whatever decision you make. It appears you have an option with regard to the stent. I didn’t; and my arteries were good…for a Y stent formation of 2 stents.
Jackie, I had a SAH on a 5mm multilobed LICA bifurcation aneurysm, it’s been coiled three times. The last coiling she said she might have to put a stent in. She opted not to. I’m doing well, it’s not doing anything, neck is still open 1.5 mm. I vasospasmed at least 21 days, sometimes they say 26 days. I was in Neuro ICU for 26 days. I think she would’ve kept me longer but I was worried about our dog. I was given Ultrasounds 2-3 times a day, by the same woman. She worked 12 hour shifts and sometimes more so she could get my night one in. She was the most experienced and she was nice. I had so many CT scans I could light up our county. All for the Vasospasms.
The psychologist I went to after the second coiling said I’d probably die of brain cancer before anything else. It wasn’t rude, we were joking around, but there’s the risk of CTs! I have photophobia, my hearing “greatly improved” which makes sounds sometimes unbearable, I often walk like I’ve got sea legs, dysphasia, stutter, foreign accent syndrome., get flustered and lost when I can’t stay on task sometimes. I lost peripheral vision but it improves sometimes.
I’ve learned to go by what she says and not what the dr reading the MRA says. Half the time she would have to get someone to reread it because the information I could get was unnerving and so most of the questions were based around the MRA.
The risk of a stent is pretty high and if I can keep functioning at the level I’m at, I’ll be happy. If those dang daughter sacs would quit eating the coils, I’d be happier.
It is remarkable how different one’s experience can be from another. My wife’s doctors told us ahead of time that she would likely experience vasospasms from day four to day fourteen. And she did. They examined for vasospasms using doppler, not CT. She did have vasospasms exactly for that span of time. She had some form of angioplasty every day during that time. And then the vasospasms ceased. She also had a stent placed along with more coils at the six-month mark, and since then all has been well. Two months ago she celebrated seven months of life post-rupture.
Hi, I don’t know what a daughter sac is. I could guess, but not a good idea.
I’m so sorry you’ve had to go through coiling 3 times. I hope the second and third time were easier, and you didn’t have the vasospasms every time.
Either the possibility of all these complications was never explained to me, or I was not mentally able to absorb what was being said. I was unconscious at admission to hospital and not breathing, so maybe I didn’t “get” everything that was told to me! Don’t the doctors realize they are dealing with brain-injured patients? My gosh. I do remember that I was constantly being whisked down the hallways for yet another CT scan because they were worried about vasospasms. I don’t think I ever had one, but they acted like this was a life-threatening event, so I’m amazed you are still with us.
Thank you for sharing with me. I am so happy for you and your wife. The beginning of this journey is so frightening and painful. I believe that my husband pushed too hard at getting me out and about. Please let her decide when she is ready to go dancing and join social groups! Feeling like you’ve got a cherry bomb in your brain, ready to explode again, is very emotionally draining.
You are a caring husband and your wife is a lucky woman, as am I! Wishing you both the best,
If you think of an berry aneurysm as a blueberry with smooth walls, mine was like a blackberry, little aneurysms all over the main aneurysm. There’s very little research but on the last angiogram, Dr. Q-W let me tell her students that came by my theory on why the coils keep compacting. The second coiling she said she packed and packed them in, until there was no more room. It’s my story that the coils work themselves into the smaller sacs from simple pressure of the blood in the artery. And since there’s no research to dispute it, I’m sticking to it
ADRauch, it is amazing how differently similar our experiences can be. The most amazing things I have come across is medical professionals who don’t believe I vasospasmed so long and insist it’s not possible, or the ones who say they would’ve done something differently. I even had one of the Neuro student drs say I couldn’t be allergic to the gadolinium. (I requested my surgeon because of the RN and got the shot that stopped the anaphalixis.). All I can say is that they weren’t there, I was, the RNs were, my Neurosurgeon was able to think outside the box and between her and the Neuro RNs, kept me alive. I am so grateful she didn’t buckle under popular belief and stuck to her guns.
Thank you for explaining the structure of your aneurysm. Do you have a photo you can share? Maybe you already have. I haven’t looked for photos at the foundation website yet.
Hang in there! I hope the 3rd coiling did the trick.
I don’t have any photos. I have my disk but cannot open it without purchasing an app that I think was a couple hundred dollars. I’ve asked every medical person near me for a printed picture of my bleed, the aneurysm and the after coiling pictures. I even asked our veterinarian if she could print a copy off the dvd the hospital provided. “Nope”. I was told to take it one of the business supply stores. Unfortunately, since I can’t open it to see where the images are, I don’t know if they can. I do need to ask. If anyone knows how to get a print, or an email copy, I’d appreciate it.
The doctor allowed us to take photos with our phone of his computer screen, showing the various images. That’s how I have them. Later I did get a CD from the radiology lab that I could open and save what I wanted. Now I don’t even have a device to read that CD.
For every question you ask, there’s usually a lot more with the same questions. Never devalue your curiosity! My last coiling was with a balloon assist, I got to say I was an airhead;)
