Looking for advice and doctor reccomendations

[rosie]

Hello!

I’m so happy to have found this community. While I’m sure none of us ever wanted to be here, I’m glad to have found this space.

I had a brain aneurysm rupture in November 2024 that was treated with a Target360 coil. I recovered well and the biggest change to my day to day life post aneurysm is my energy is very different and I have the occasional headache. I had my annual cerebral angiogram in April. My aim is to be happy, healthy, and cognitively the same for myself, my husband, and my young daughter! So I’m doing everything within my power to make this the best possible outcome!

Here were the doctor notes:
The previously treated anterior communicating artery aneurysm has a recurrence at the neck measuring 3.2 mm x 1.4 mm. The bottom of the coil mass is slightly unraveled.

I’m now trying to exhaust options to explore the best path forward. I’m a 38 year old Black woman, mother of a 3 year old, I had hypertension in pregnancy that I’ve managed since then but am aggressively aiming to continually and aggressively reduce it (with medicine and natural approaches like food and vitamins) as it tends to spike on occasion.

My asks for the group:
I live in Minneapolis, MN and have consults with the following doctors.

1. Has anyone worked with any of the providers I listed and have any positive (or negative) feedback to share? I’m not sure if I want to go with my current neurosurgeon - he saved my life and I will forever be grateful but I’m so disappointed that the coil is already started to unravel… wondering if someone else with a different approach might be a better match for me. I keep saying I want to find the 'aneurysm all-star" to fix this. I’m willing to travel - I have a lot of travel points saved

Here’s a list of my current consultations:
Dr. Andrew Walker Grande - Neurosurgeon - MHealth Fairview, Minnesota (my current neurosurgeon who did the coil)
Dr. Eric Nussbaum - Neurosugeon - Brain & Spine Institute, Minnesota and National Center for Brain Aneurysm and Tumor Center, Minnesota
Dr. Guisepper Lanzino - Neuersurgeon - Mayo Clinic in Rochester, Minnesota
Dr. Yasha Kayan - Neurointerventional Radiologist - Allina Health, Minnesota

2. Does anyone have any experience with a previously ruptured aneurysm and going with one of the following treatments?

Treatment’s I’m exploring:
A clip
A stent
Potentially a web…I just learned about this from reading clinical trials (something I’ve started to do in my spare time) and Dr. Kayan is the local specialist for this type of procedure.

THANK YOU ALL! ROOTING FOR YOU!

[FinWhaleFan]

Hi @rosie!

Welcome to our little corner of the Internet!

You have it 100%. No one actually has it on their wish list to be here, but - all things considered - it is a great group with which to hang out.

I am not in the Minnesota area, so I will move along to your second question!

I, too, had a ruptured aneurysm that was treated with three coils. Fast forward, and my residual aneurysm was growing so it was treated with a stent, specifically a Pipeline Flow Diverter instead of a WEB. My aneurysm was declared occluded (i.e., blocked off) so it worked for me!

I am not sure what specific questions you have about a stent, but I am happy to answer whatever I can for you!

… and on a side note, since you opened the door, I am going to walk right in since you gave me the invitation. During my journey, I learned about the MIND “Diet” (really it is a lifestyle instead of a diet).

If you are not familiar with it, it may be of interest to you as it is basically a combination of the well-known Mediterranean Diet and the DASH Diet. If you are not familiar with the DASH Diet, it is a lifestyle to target hypertension. As the acronym suggests, the MIND Diet’s focus is - well - on keeping a healthy brain!

What Does the MIND Diet Do for Brain Health?

To be fair, it is a newer lifestyle (2000s) so the science behind it is still being studied. In my own opinion, since it is based on two good diets, how bad can it be? Plus, blueberries are one of my very favorite things so any excuse, right?

I’m rooting for YOU too! Let us know what we can do to support you!!

Fin Whale Fan

[rosie]

Thank you @FinWhaleFan !

These are all super helpful insights. I’m glad to hear the pipeline flow diverter has worked for you! I’ll definitely follow up if I have any more questions about the stent - going for my 2nd of four consultations tomorrow so I’m sure I’ll come out of that conversation with questions.

Thank you also for the MIND diet! I’ve heard of Mediterranean and DASH but MIND is new to me… I’ll try it out.

I appreciate the response. Thank you and take care.

Rosie

[oct20]

@rosie

Hi Rosie, I had an aneurysm that ruptured in October 2020. It was coiled and after two weeks in the Neuro ICU I was able to get home. At my follow up appointment with the neurosurgeon I was told that the coils had compacted and that I needed a more permanent solution, he suggested that a stent was needed. I trusted him and a couple of months later he inserted the stent. It is now 5 1/2 years since I got my stent and my life is back to normal.

My neurosurgeon said that when we rupture, the coils are placed in the aneurysm to stop the bleeding, so the blood can make a blood clot. It is NOT the permanent solution because the coils usually compact because they are super soft… A stent or web is not possible to use when we rupture because it requires medication with two different blood thinners, so it is a two- step procedure and this is not a failure, this is how it works.

For the people who get a clipping, it’s a one-and-done procedure, but that is more invasive than the coils and stent. Remember that the Neurosurgeon is the one who can recommend the best treatment for your specific aneurysm. Best wishes for your future health and recovery.

[Moltroub]

Welcome again Rosie! What great questions! I have to skip down to #2 as I’m in the western piedmont of NC. I did rupture. Total of four repair attempts counting the first. My aneurysm has never fully occluded it’s in the Left Internal Carotid Artery bifurcation, so a different location. The repairs started with the original coiling, then six months later more coils due to compaction, maybe a year for the coils with balloon assist because of compaction and then finally the stent with more coils. I have a strange type of aneurysm that looks like a blackberry more than a blueberry, she quit counting at 24 daughter sacks. My theory is the coils were trying to fill all those daughters, so the neck didn’t close off. She liked my theory well enough for me to tell it to her Residents after my stent procedure.

My stent is a Neuroform Atlas Stent. My neurosurgeon said I wasn’t a good candidate for a craniotomy from the time I was in NSICU. All my arteries are torturous (squiggly) It was a fall back for when she was trying the balloon assist. Remember there are a lot of different stents and more are developed each year it seems although the FRED and the PED, AI will give you more types, including the WEB. There’s also research for using polymer stents.

Since doctors are human, it seems they like to stick with what they have experience with. But they do have to get their CEU’s and it seems they frequently go to big events on neurosurgery so they get to learn about the new things available.

When I first started in this wonderful group, it was mostly craniotomies but the endovascular group continued to grow and it became all about the FRED and the PED. Since none of those would work for my aneurysm, I had to wait around for the Neuroform Atlas, I think it’s the second generation, don’t quote me on it. I believe it’s wise to make lists of all the risks and benefits each type of procedure comes with, so craniotomy vs endovascular. However, in the end we do need to trust the surgeon we use for knowing what would work for us and our specific aneurysm. When we rupture we don’t have a choice of who is doing the work. Many of us stick with the one who saved our lives giving them a heck of a lot of credit. They did save our lives after all. I think it’s wise of you to see the others, even though I will stick with mine. She can think outside the box.

I do hope you get a surgeon you trust. But please understand it’s quite normal for our coils to compact as @oct20 mentioned. I imagine the loose coil is due to compaction. Did your surgeon tell you when he wanted to fix it?

[Cathy1]

Hi Rosie

This website is full of information. I, too, ruptured in Dec 2013 at the age of 61. I have 14 coils in one aneurysm and 5 coils in an adjacent one plus I have a stent. So far, so good. I have to have another MRI in 2027 which suits me fine. I used to go every year, then every second year and now it is every five years. Life certainly changed for me. Now I fully appreciate every single day that I am given. Pre-rupture I didn’t pay much attention to the beauty in nature. I live in Toronto. I was never able to return to work because I am only able to do one thing at a time. I am grateful that I can still do all of the things that I used to slowly … except count the change in my wallet! Isn’t that funny! Good luck with your journey. (cathy m)