Last week I went for my 6 month check-up and MRI post ruptured aneurysm and coiling. I have felt fine physically and mentally, probably the strongest I’ve been since my aneurysm ruptured, so I was not prepared to hear I would have to have another procedure. My aneurysm either grew or my coils compacted so I have to go in and have a flow diverter put in. My question is has anyone else experienced this? Would you be willing to share?
I had an aneurysm , small 3.5 mm and I operated through endovascular procedure, using a Pipeline embolization device (One of the flow diverters in the market) , and I am OK, I am 47, and my procedure was done 2 years ago. Talk to an interventional radiologist. Please Check these pieces of information:
I am so sorry to hear that you have to go back in. I am 2 years this March 19th. I have clips on my rupture and other annie that didn't rupture. Just feel good that doctor's are on top of your issues and they have it handled. We are here if you need us :). Lots of prayers going to you.
Hi Marjie,
Gosh I'm sorry to hear this news, I can imagine your surprise and dismay at the news!
Unfortunately, once we've been treated for an annie, the treatment is not deemed permanent. While clips are shown to be a little more permanent, that's not 100% true, as my Dad had a clip and it posed problems later on.
I'm not aware of any other members who have had your exact scenario, but we do have a 2x treatment survivor among us. Here's a link to her blog, and you can look her up here and send her a message.
http://www.teatimewithheidi.me/brain-aneurysms.html
Thinking of you - keep sharing your updates, you will be on my mind and in my prayers. I know this isn't what you wanted to go through or hear, but you WILL get through this treatment too. Hugs to you today, from South Carolina.
-Markelle
I remember (and this was 8 years ago), 6 months after my rupture I had an angiogram and then another angiogram every year for a couple of years.... then I had to talk my new doctor into doing an MRI instead of an angiogram. Although I cannot speak to the flow diverter.. I never heard of it, I hope that you have success and that it is not a complicated procedure.
Take Care!
I’m praying all is and will be good for you. At least there is opportunity to be helped again.
Hi Marjie - I have heard of this happening with coils, because they can compact. Clipping is actually supposed to be a permanent solution (it obliterates the aneurysm). However as I learned the hard way, that depends on the skill of your surgeon. My first surgeon at Yale completely botched my clipping, didn’t even realize it, but I suspected something…long story short I had to have a second craniotomy with an AMAZING surgeon at NYU, and now my aneurysm is gone.
What I would do now (if I were you) is to find the very very best hospital/surgeon you can get to for a second opinion on next steps. These doctors are not all created equal, and some are FAR more skilled than others.
I’ve done a ton of research on the best neuro hospitals by state so I will check for you and send another message shortly.
Deep breath :). Jen
How close are you to the University of Chicago, the interventional radiologist who put my coils and stent in left to go there.... as far as I know he is still there. I contacted him for a second opinion after an MRI... long story but I soooo wish he was still here!
My rupture was clipped n my 2nd one was coiled my last ateroghram showed a nudge under my clip but was so small my doc said if the buldge got bigger then we mite have to do something but she said that she didn’t think it was n emergency so I don’t need to see her again go 3 years unless she needs to go be happy call her if I have any problems. I’ve felt great since
Hi, I’m back. Here are the top neuro hospitals; hopefully a family member can get you to one for a second opinion:
1.Johns Hopkins - Baltimore
2.Mayo Clinic - Rochester Minn
3.New York Presbyterian - NYU (Philip Meyer is the master at coiling there)
4. Mass General - Boston (Dr. Ogilvy, but I heard he left and is now at Beth Israel)
5. UCSF - San Francisco
6. Cleveland Clinic
7. Northwestern - Chicago
8. UPMC - Pittsburgh
9. UCLA - Los Angeles
10. NYU Langone - Dr Howard Riina - he saved my life, he knows how to clip AND coil, which is rare AND he knows how to fix other doctor’s mistakes (not all of them can or will)
Good luck, Jen
Hi
I had brain haemorrhage and treated with coiling in dec 2010’ 6 months later I fell pregnant with twins so could not have a brain scan, after twins were born I had angiogram ,2012,and I was devastated when they told me I had another aneurysm. In dec 2012 I had the aneurysm clipped. Hopefully this is the end if it.
Good look, you have lots on support on here
Lisa x
Marjie
This sounds fairly common. I had to go back in 1 year after my initial rupture/coiling for re-coiling. That was 3.5 years ago. My last MRI/MRA visit in 9/14 indicated everything is now stable. I won't have to go back in for another 3 years. On a further upbeat note I'm hearing rumblings through various sources of a new plastic material under R&D to be used in place of the coiling that will be more of a natural rebuilding of the vascular wall. Keep your ears open for such developments. This could make a huge difference for all of us.
Jennifer said:
Hi, I'm back. Here are the top neuro hospitals; hopefully a family member can get you to one for a second opinion:
1.Johns Hopkins - Baltimore
2.Mayo Clinic - Rochester Minn
3.New York Presbyterian - NYU (Philip Meyer is the master at coiling there)
4. Mass General - Boston (Dr. Ogilvy, but I heard he left and is now at Beth Israel)
5. UCSF - San Francisco
6. Cleveland Clinic
7. Northwestern - Chicago
8. UPMC - Pittsburgh
9. UCLA - Los Angeles
10. NYU Langone - Dr Howard Riina - he saved my life, he knows how to clip AND coil, which is rare AND he knows how to fix other doctor's mistakes (not all of them can or will)
Good luck, Jen
Jennifer, let me add: Dr. Gewirtz at Riverside in Columbus, Ohio. He’d considered one of the best brain surgeons in the midwest.
Margie
I too suffered from an asah in april 2013 and have had multiple mra and angiograms to determine if and to what degree my coils compacted. The highest risk of compaction generally occurs in the first 2 years. I told my neurosurgeon I didn’t care how many scans he did I never want to experience another rupture. I have not had any additional coils added even though I have a very small degree of compaction. Doesn’t thrill me to think I may eventually have to have something else done buy beats the alternative!
I live in Columbus.... I will need to look up Dr. Gerwirtz :-)
Dr. Gewirtz…good to know if I ever relocate to Columbus…:).
Yes I have experienced the same thing. It also took me by surprise when I was told that I would have to go back in for a second procedure as the coils had compacted. The second time was scarier for me just because I had time to think about things versus going in after a rupture and things going pretty fast. All went well with my second procedure. I had a great doctor (a godsend) who I had complete trust in. I continue to have follow ups but have remained stable now for some time. I wish you luck.
Hi Marjie. I had a rupture December 2010, that was coiled. I had a second aneursysm coiled in 2011. My 2 year MRA showed that the ruptured aneurysm had grown back. I was told there is a 15% chance of that happening. I had to have a crainiotomy in June of 2013 to clip the aneurysm. This has not been an easy journey as I have never experienced anxiety like this before.
I hope all goes well for you. Please let us know. This is a great site when you need understanding. Be well.
Angie
Mary Barton said:
I live in Columbus.... I will need to look up Dr. Gerwirtz :-)
Mary, he’s great and the people and nurses at Riverside were amazing.
Marjie -- your experience mimics my story.
April, 2012 -- ruptured basilar aneurysm, repaired with coils
April 2014 -- routine angio revealed compacted coils
July 2014 -- more coils inserted, plus a double PED in the artery
Jan 2015 -- 6 month angio reveals all is well; aneurysm is completely occluded. I'm free for a year!
These coils compact; that's the nature of how they work over time. They don't tell you that. Stents and PED's (whatever you want to call them, they accomplish the same goal.) seem to prevent coil compaction. But even that doesn't have an extensive history. We forget that a lot of this is cutting edge (and in some cases, bleeding edge [no pun intended]) technology. We as patients are learning right along with the doctors.
Please don't be afraid to get a second..or third..opinion :)