If you had to do it over, would you get your aneurysm clipped or try the new pipeline stent instead?
My 23-year-old daughter has an aneurysm that has doubled in size in the past year. We live in Seattle, and the surgeon we have so far has given her the option of either. He seems to be pushing the Pipeline, when last year he was definitely pushing the clipping. He told us of the 30 Pipelines done so far here, a few have had hemorrhages, a few strokes, a few lost their vision. We didn't like those odds, but clipping is more invasive so you would think even riskier.
We need some thoughts from those who have been through it. Do you think the risks are worse for an older person? We keep hearing that because she is young and healthy, she will probably be OK with either one. We really don't know what to do.
I'm glad you didn't have any complications. That's good to hear. But do you mind if I ask you what kind of adverse affects who have had emotionally? Is there always some kind of bad effect, and is it different depending on what part of the brain the aneurysm affects? Thanks, and thanks also for your encouragement.
Hi - sorry to hear about your daughter. It is a tough emotional ride and so hard to know if you are making the right choices. I am 34 and had a middle cerebral aneurysm clipped in May, 2012. I have two young kids, was healthy and pretty fit. I have a strong family history of aneurysms so I discovered it on an MRI that I had as a check-up. I had no symptoms and it was relatively small. My surgeon wanted to fix but I had the option to wait and watch also. For many personal reasons, waiting was not for me. I decided to have the surgery and because of the location, clipping was the only option.
I wanted to write because I was so fortunate in my experience. I had the surgery on a Wednesday afternoon and was home Friday at supper time. I won’t lie, I felt like I had been hit by a bus for a week but every day I felt better. I was off pain meds within a week, only had migraines when there was a lot of commotion/noise, and tried to nap most days as my energy was low. I felt quite good after 4 weeks and at 6 weeks was getting back to myself. I went back to work at 8 weeks and had a few headaches the first week as I spend the whole day in front of a computer. But the second week was fine.
Now, it is 7 months later and life is back to normal. I had such a positive experience that I like to share but it is a very personal choice and one your daughter must feel comfortable with. I am more than happy to talk more about my experience if you want more information. Feel free to email me.
Good luck with everything and take care!
The Pipeline was approved by the FDA for use in this country a year or so ago but even Johns Hopkins has probably only done a little more than 100 by now. Our hospital has only done 30. It has been used in Europe for a long time and I've read varied things about it, but some places have been getting 95 success rate with it. Unlike the coils, it almost never has to be re-done, from what I read. I think you make a good point about clipping, though, because it has been around for so long. I am nervous about the scar, because she has fine blond hair and I'm afraid it will show. She is so young and beautiful. I am definitely more afraid of everything than she is! Thanks so much for your feed-back-- it's so appreciated, and I will pray for you, too.
Kasey's aneurysm is behind her eye in the carotid artery, near the optic nerve. Vision loss is a concern. Her aneurysm is still small so far-- not even 5 mm-- but it has doubled in a year, which is why it needs repair.
It's very hard to get good statistics. I've read some studies on Pub med that seem to indicate that clipping yields more complications (as much as 25 percent). Some studies show Pipeline as being highly effective with few complications, while other small studies show an alarming number of complications for what is supposed to be a minimally invasive procedure. I think it probably depends on the age of the patients, the skill of the surgeons, other health factors. If we decide on Pipeline we will go to the place that has done the most of them, because some places were part of the FDA study so they have been doing it for years longer than our hospital in Seattle. If we go with the clipping we will also make sure we find the best surgeon. We have two surgeons near us that are supposed to be very good, but it is a teaching hospital (UW) so I worry that someone inexperienced will be "in" on the surgery.
Thanks for all your good points-- I like the idea of having a Christian surgeon. It's also good to consider which procedure will be hardest on the body.
Im very sorry your daughter is in this situation and that it is growing quickly. To be honest yes I would do it again. Ive actually had brain surgery 5 times in order to have 6 aneurysms clipped, in 2006, 2009 x3 and 2010. There is chance of hemorrhages, stroke ect during each type of surgery but there is chance of these things and others with other types of surgeries. The most dangerous thing for an aneurysm that is growing as far as surgery goes is to not have it done. If her doctor is saying surgery she really should schedule it. I know brain surgery sounds and is scary but its even scarier to not have surgery and know that its not reinforced, and can rupture. I know this because aside from the 6 in my brain that are clipped I Have 2 in my carotid artery behind my left eye and I live everyday afraid one or the two of them be hind my eye will rupture because we haven't reinforced them yet and can't because its too dangerous to do unless they rupture or grow to a certain size. Again, Im sorry your daughter is in this position and I will pray for her but from what you have told us she really should have this surgery done either way she decides to do it. Your family is in my prayers and I hope she has a good recovery. Is her aneurysm in her brain or elsewhere in her body?
Hi Diana,
when I was 23 just like your daughter I was diagnosed with an internal carotid artery aneurysm just behind my right eye, it was 11 mm… I had the choice between clipping and coiling/stenting. I didn’t think two times when I decided (with my family and doctors) to have it coiled, I was afraid of the scars and risks involved in craniotomy,
That was in 2005… Since then my aneurysm has continued to grow… It had to be recoiled once 6 months after first procedure and then, this year MRI showed it needed to be fixed again because it was growing back.
To be honest my first words to my surgeon this year was PLEASE CLIP IT, I didn’t want to know anymore about it, I know that to clip is the only procedure known and proven to be a permanent fix and gosh I wish I would have done it 7 years ago!.
However my Annie could not be clipped anymore due to all the coils and stents that it has inside… If we place a clip the Annie could tear, rupture and the risk is too big.
Pipeline was now for me the only option and had it done 2 weeks ago, Procedure was really almost shockingly easy… The day after the procedure I was walking around without pain or scars. I did a lot of research and pipeline looks very promising, even more than coiling, But its so new that no one can say how permanents it is yet…my doctors are confident that it will work … Fingers crossed.
The only advise I could give you is… If you can have it clipped and the risks involved are not so much greater than other procedure… Then clip it. Yes… Recovery might be longer… Yes, it might leave a scar… BUT once it is over its over… And she can forget about it and go on… As I said, I was 23 at the first time… And after coiling I never ever felt totally healed again, every yearly MRI for me has been scary… I am 31 now, wishing that I could turn back the time to that moment I had to decide how to treat my Annie and choose to clip it, I guess that way probably I wouldn’t have had to have a third surgery this year… If It’s not nice to live that once, just imagine 3 times.
By the way…I was in this group because (while having pipeline surgery) my doctors found a second little unruptured aneurysm in the MCA. Will need to be clipped… I am scared.
Naya that advice helped a lot. I am sorry you have had so much trouble.
When I read over these blogs it makes me want to choose Pipeline because it seems that a lot of people who get clipped have lasting problems, such as emotional issues or memory loss, and as you say, the scar alone is really daunting. I get absolutely terrified thinking of brain surgery for my daughter. She wants to be a nurse practitioner and is really smart and focused on school (she's about to go to graduate school), and it really scares me to think that the surgery could keep her from pursuing her dreams.
But when I read your message, I realized for the first time that if they Pipeline it and something goes wrong, she might not be able to get it clipped. That is a big consideration. I know it is considered so much better than coiling-- I've read about coiling and our doctor didn't even give that as an option-- but you are right, Pipeline is so new and is SUPPOSED to be permanent, but the track record is unproven. Also, I have a friend of a friend who got brain surgery and said you can't even see the scar now. As you see my brain is skipping around.
I think more and more things are pushing us toward doing the traditional clipping.
If you could go anywhere in the country, where would you go? That is the other big decision. The surgeon here in Seattle at UW is supposed to be very good, but I want to go to the best place.
That is amazing Pipeline was so easy for you, and also encouraging if we do decide to go that route. Ultimately the decision is Kasey's, although I will have a lot of say. Right now Kasey is saying that she absolutely hated the cerebral angiogram and never felt right after it-- some nerves were damaged in her neck-- so she is very nervous that Pipeline involves the same procedure. It's interesting she had that experience, because everyone else is saying it was a very easy procedure. Someone even said it was a pleasure to have brain surgery with Pipeline!
I am sorry about your newest aneurysm. If it is small, I wonder if they would be content to just do CTA scans every year to see if it grows before doing anything about it?
Thanks again for your thoughtful answer, and God bless you--
Well… Unfortunately I can’t give you any advise regarding the doctor, unless you wanted to come all the way down to Australia… But all I can say is, get a doctor with a lot of experience with the procedure you chose, make a lot of questions and also make sure the hospital has the latest technology and resources…
Good luck, and have a good New Year’s Eve… Give Kasey a lot of hugs and much much love…
Please let us know what you decide.
I wouldn't hesititate to have the clipping ! I've had two craniotomies (1998, at age 37....and in 2010, at age 48) as well as a coil for a leaking aneurysm in 2006 (which put me in a coma for weeks)...All was just fine until one night in 2010, I had the same horrendous pain in my skull that I remembered having right before my collapse in 2006--and that pain was from the failure of the coil. I went back in the hospital and was told I could try the coil again or do the clipping/craniotomy. I didn't think twice about that offer! I chose the clipping, hands down. And in my experience and many others here on this site, I had no lasting deficits and the surgeries were not as bad as they sound....and with the coil, I personally was astounded to find out that 1 in 4 fail ! (Thats comparable ,in my mind, to jumping out of an airplane with the 1 in 4 chance that your parashoot won't open). and to know in advance that the coils may need to be re-addressed in the future, well, thats too dicey for me (I hadn't known they'd need upkeep myself, not until it went haywire on me, and let me tell you it was not a pleasent feeling)...Yes, the clipping is much more invasive, but also considerd the gold standard in treatment, with a % 1 to % 2 chance that something could go wrong, verses a much higher chance of the new found technology going awry. Best of luck, I hope you make the decision that will benefit your daughter and fix the problem, once and for all. Janet
Thanks Janet. The thing I am hesitating about is that the Pipeline is supposed to be so much better than coils-- I have heard a lot of horror stories about coils too. I hate to put her through brain surgery if the Pipeline is permanent and will do the job. But the question is: Will it do the job? I know they've been doing this brain surgery for 30 years so it's been well-tested and is the gold standard, as you say. A lot of neurosurgeons around the country (we have a lot of connections to doctors in informal ways), are saying the same thing you are, but I don't know if that's because neurosurgeons are a confident bunch and don't really consider neurosurgery to be the huge deal that I do!But then I thought, what if the Pipeline fails years down the road-- would they still be able to clip, or would that option be off the table? One woman told me sometimes it's hard to do the clipping after a coil or stent fails. That makes me want to choose clipping, too. I don't want Kasey to ever have to go through this again.
How was the scarring from the clipping? My husband says, who cares, we just want her to be alive, but she is 23 and beautiful, and I've seen scary pictures that have me in tears. Did your hair grow back, or can you still see the scars?
I'm so glad you are alive and doing well! Thanks SO much for helping out others with your story!
Hi - just wanted to make a quick comment about scarring and hair with clipping. I know every surgery is different but for my clipping, my scar runs from the top of my forehead around and ends by my ear. It is all concealed in my hair and what amazed me is that they hardly shaved any hair. I have a small piece shaved where my hair is thick and it is about the size of a stick of chewing gum (and the hair is growing back). The rest, they just parted my hair. Once the staples were out and I washed my hair, you couldn’t even tell I had anything done. I do have a small depression in my temple but it is covered by bangs. Basically two weeks after surgery, there was no way to even tell I had brain surgery.
That's amazing!!! Wow! Thanks, I feel a lot better. I've heard a lot about the depression in the temple, too-- that must be commonplace, but it doesn't sound too horrible.
I was pretty amazed at how concealed the scar is. I had about 30 staples running the length of my scar and was shocked once they were out because my hair covered the whole thing. I use humour to deal with many situations and joked early in my recovery that I couldn’t get any sympathy because no one could see my scar. And just to clarify, when I said after two weeks you couldn’t tell I had surgery, I meant visually.
Recovery was obviously a long road and I was very tired for a while. I don’t want to undermine the seriousness of the surgery but I like to share my story as I was blessed with a good recovery and outcome. I feel like the brain is a place that should not be messed with but it can be done.
I hope you are getting closer to a decision. It is so hard! Best wishes.
For how long were you tired? This is another reason why the open brain surgery scares me-- Kasey wants to be a nurse practitioner and once she is accepted would begin a grueling program at an accelerated program. It is one of the reasons why we are thinking of coils and stents even though we really think clipping is the best long term option. Of course her life is the most important concern, but Kasey pushes herself and I can see her powering through with school even though she didn't feel well and should be recuperating.
I know no one has all the answers, we really just have to do what we think is best and hope it is the right decision.
My aneurysm was (I believe) in the same place. I had it clipped. The neck of mine was very wide and the option of coiling really wasn't an option. My Neurosurgeon told us that there was a 2% chance that the coil would stay in the aneurysm. He also said that there was about a 1-2% risk of rupture in the next 6 months. My husband and I did a lot of research before we met with the Neurosurgeon and we had already decided that clipping was the way to go. I hadn't even run across the Pipeline in all the research we did and he didn't give that as an option. Maybe due to the fact that mine was at a junction of the carotid and communicating arteries. But, clipping has a 100% fix meaning that it doesn't have to be redone. I had the surgery within a couple of weeks of meeting with my neurosurgeon and am alive because of it. He said that we avoided a catastrophic failure by having it done so quickly. There was another annie off of the annie and it was about to explode. So, really to answer your question. Yes, I would do it again and again if I had to.
I had no problems with being tired that I recall at least, and the scar wasn't an issue as my hair grew back in like it was supposed to do, and no one had any clue I'd had major brain surgery. The thing that made me go for the clipping 2nd time around was the fact that it took care of the aneurysm -(at least that aneurysm!) and I didn't have to worry about any unforeseeable disasters down the way after the the clipping. Beleive me, when i least expected anything to go wrong, I was shocked to land back in the hospital witha failed coil. Ofcourse you're talking about the pipeline procedure which I'm sure is very good, however in my particular case, I didn't want to leave anything to chance. How does Kasey feel about the offers on the table? I'm sure she's frightened, naturally, and I hope and pray that the choice she makes is the perfect choice for her. My best to you all, Janet
