Stenting After Coiling?

General
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Hello everyone, my name is Grace, I’m so grateful to find this community! I’m 42 years old and am also a breast cancer survivor (got stage 1 breast cancer in 2019). My dad have multiple aneurysms (unruptured) but I had no idea that I could inherit that. Last year I stayed in ICU for two weeks for a ruptured aneurysm. I collapsed in my sleep which is uncommon, luckily I was sleeping with my 5-year-old daughter who couldn’t wake me up at midnight and started crying….After 8 hours and 2 rounds of bleeding, I had coiling done. I recovered very well. Now I need to make a decision on whether to have another procedure, stenting, to eliminate the recurrent risk. I have met with 3 doctors with different opinions:
Dr.A (yes surgery): who treated me at a local hospital after the rupture. At the beginning, he said if the follow-up MRI/MRA shows that stent coulnd’t solve the problem, then we might need craniotomy which scared me. He didn’t say I could observe. It seems the residual risk must be fixed.
Dr.B (no surgery): I went to Dr.B who works at a top hospital in neurosurgery for a second opinion. I was very shocked when Dr.B told me that I looked pretty safe (based on the MRI/MRA 2 months after rupture) and “do NOT let anyone do surgery on you”. He said he was surprised that Dr.A recommended surgery before the follow-up MRI/MRA. He told me to do MRA every 6 months. It takes time for things to go wrong, and any abnormalities will (likely, I guess, nothing is 100%) be detected by the biannual MRA. The recurrent risk is 7%.
So there was a tie, in order to break the tie, I went to Dr.C….
Dr.C (maybe surgery): He is a top doctor and former mentor of Dr.B. He said he drafted questions for board exams, the textbook answer for a situation like mine (ruptured) is to have stent placed. Given that I’m healthy and young and have a long life ahead of me, instead of being anxious (actually I’m not that anxious) about MRA every 6 months, better have it fixed permanently. The risk for stenting surgery is 2%

So I tentative booked the surgery in late May but I’m still hesitating. I know that for younger patients like me the accumulated recurrent risk (say 0.3% per year * 30 years left?) might make the surgery worthwhile….BUT I don’t expect myself to live to 80 years old, I had breast cancer before, then an aneurysm…I just hope I can live another 12 years of healthy life until my daughter is an adult! It was very lucky that I survived and recovered, I really don’t want to get into such risks again. On the other hand, recurrent risk does exist. I’m torn…

Sorry for the long post…If anyone can share some experience or opinion, I will be very grateful!!

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Hey Ms. Grace!

Thank you for the detailed post as it helps members to better get an idea of what you’re going through!

Family history is getting more attention in research I believe than say six years ago when I finally was able to get on the internet about aneurysms. I promised my Neurosurgeon I would not. I really try to keep my promises, especially to her (don’t use profanity) LOL. Many disease are linked to genetics, cancer being just one. The paternal side of my family is riddled with various types of cancer and heart issues. On that genetic side, if one lives into their 50’s, it’s a toss up to life expectancy. Usually well into the mid to late 80’s though I had a Great Aunt that lived to the ripe old age of 113 or thereabouts. She told me her secret was a shot of whiskey in the morning and a glass of “Dago Red” (homemade Italian red wine) at night. Her glass was just a cordial so not much. On my maternal side, there’s diabetics, some cancer but not much and only one Aunt was diagnosed with cancer at 90, she lived to be 99, just a few days shy of 100. Both parents were 84 when they passed away. So look at both sides of your family to estimate life expectancy and then realize medical science keeps getting better! For me, it’s not so much quantity of life but quality, I want to live as long as I can do the things I love.

Having ruptured at 53 and gifted with a 26 day stay in spa treatment (NSICU) I can share my experience. I have a multilobed aneurysm, instead of blueberry it’s a blackberry. It’s also up at the LICA bifurcation on the Circle of Willis. Apparently a very difficult spot to reach, but I’m not a neurosurgeon. My arteries are tortuous (squiggly) which hasn’t been an issue for Dr. Q-W, she happens to be an expert in AVM’s. For me, her preference is coils rather than a craniotomy but that was a possibility in procedure #3.

She did the follow up MRI/A’s and I did have to be recoiled at 6 months. It meant that nasty two year count had to start over again. The coils had compacted into the daughter sacs. Before the two years was up, I had to be coiled again and she added a balloon assist. Then I started having neurological issues which moved to the bad side and the Neurologist ordered MRI/A. Results were sent to my Neurosurgeon and she didn’t have to do the “let’s look and see” angiogram, she went into “let’s try to fix it” angiogram and she used the Neuroform Atlas Stent in 2020. All this because of one little aneurysm that has more than 24 daughter sacs (she quit counting)! I am very grateful she didn’t follow the text books on me, I didn’t read them and what she has done has allowed me to continue doing what I love.

As for statistics, I have learned to discount them. Unless a doctor can cite where they learned them, I personally don’t view them as valid anymore. Are they talking about the hospital they work at, their own patient population, the State they work in, the Country or Internationally? Did they just agree that’s the numbers they would use? I once told a Resident that was with Dr. Quintero-Wolfe to prove it when he started spouting off stats. She laughed as she knew it was coming. He couldn’t answer where he gleaned his numbers or where the study/article came up with them. I used to tutor Statistics and Algebra, so numbers are important to me, even if I can no longer do simple math.

I’ve often wondered how a Neurosurgeon or any specialist for that matter gets the label of being the best or one of the best in their field. Is it the ratio of survival rate to surgeries? Is it politics? Is it that they have a great grant writer and are able to get grants for research? Is it patients or family getting on line and telling Google their experience? Larger hospitals in a more populated area will most likely have a higher patient population than someone in a less dense area, does that mean the specialist in the less populated area isn’t any good? I know the answer to the last question, but if anyone can tell me how Doctors are rated in their specialty, I’d sure appreciate it!

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Thank you soooo much for sharing your experience and thoughts. “How are doctors rated” is a good question, for the Castle Connolly’s list which I often check, reputation and seniority are important.
Agree that statistics are not everything. As they said, “probability doesn’t matter if you can’t bear the consequence.”
Since I’m not mentally ready to face the risk, today I canceled the surgery for now. I’m generally safe right now, I want to continue to recover from the rupture (energy level is still low), enjoy my normal (but precious) life, and buy some time. At least wait after I can bring myself to tell my parents that I had an aneurysm.
Thank you again!

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I have never heard of Castle Connolly’s list! I need to look that up, thanks so much as I know today will be a great day since I’ve already learned something new😆

For what it’s worth, I think you’ve made a good decision, it’s the one you’re comfortable with. I have had six month MRI/A’s since I ruptured, it’s what Dr. Quintero-Wolfe used to decide if I needed another angiogram, I usually did. Then I would get the repair angiogram within a week or two, except the last one where she put the stent in, she didn’t need the look and see angiogram, prior, just the one after. Can’t have dye anymore so, she will only do an angiogram if my life depends on it, I’m sorry I don’t remember the names of the one where she looks and the one where she repairs or if there is a difference in names. I know with each time they put me under, they had to use less as it really effected me neurologically and was taking longer for me to get over it. She gave me a long reprieve between #2 and #3. I think my next MRI/A has been pushed out until next year since my Neurologist ordered them a few months ago.

Watch out for your triggers that can cause your brain to go wonky, mine are loud noises and bright lights. I don’t always do what my Neurosurgeon wants. I received the stent because she asked me if I had been gardening, I said of course, she asked if I was using the tractor or tiller, tiller was on the needs fixed list, so I was using a gardening fork. So you might want to follow the recommendations on lifting weight, etc.

And if I may, I would suggest you have a will. Not that I think you’re going to kick the bucket any time soon, but one never knows. We had our first wills drawn up in our early 30’s I think it was. Some friends were killed in a car accident. They had no wills but had a couple of young children and it became a nightmare for the children and grandparents who all wanted custody. One of the lawyers where I worked told me if they had had a will naming a guardian, it would’ve been much easier as Judges tend to weigh that heavily. Dying intestate in NC means 50% goes to the spouse, 50% is split among children. If there are no children, than the 50% goes to the deceased person’s parents. Another friend almost lost everything when her husband died of a heart attack and his mother wanted her 50%. Luckily, one of his brothers talked her out of it. Reality is we have to know the laws of our State and protect our loved ones no matter the size of our estate.

I hope you and your daughter enjoy the Summer! Don’t forget to eat your protein and stay hydrated LOL

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Eight years ago they told me I had 30 to 45 days to live . I had 50 percent dying on the table. 45 percent living my rest of my life in a wheelchair. 5 percent having bad headaches for the rest of my life. One Dr. At the Mayo Clinic told me to live my life the best I could. I was 56 at that time. So I choose not to have anything done . Best 8 years of my life. And I give God all the credit ! Just remember it’s not the ride, but the journey. Take care and God Bless. Richard

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Good to see you again @richard_e_s ! You’re spot on with life being a journey and a grand journey it is! Do you get an image done on a regular basis?

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Welcome Grace! 2 years ago, I went to the ER for headaches & extreme high blood pressure. I was a workaholic at a stressful admin. position and never took a day off in decades. An MRA revealed that I had a 5mm aneurysm close to the brain stem and was pressured to repair with a brain stent. Looking back, it seemed like the neurosurgeon sold me a procedure that was simple(non-invasive) and I was eager to return to work immediately. After the procedure, I had extreme neck pain with nerve damage. After 2yrs of rehab & therapy, I am still having difficulty and not able to work. My life turned upside down & had to see a behavior therapist to help me deal with my situation. It’s been an arduous journey but learning to enjoy life at 55. I never imagined that a Rottweiler puppy can make smile again and is helping me heal. I often reflect and question if the procedure worth it. I agree, it’s the quality of life and I have to make the best of things. Seems bizarre, but I’m grateful for this painful pause because I would have worked till the end of life and never would taken the time to enjoy simple things on this earth such as taking walks with a happy puppy breathing fresh air. You have to factor the expert opinions but most importantly, what is what’s best for you. Wishing you well & take care!

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I had probably similar situation. Aneurysm neck was 6mm. Coiling was done on 2/20/22. However since the aneurysm neck was wide, the surgeon did a followup stent procedure on 3/14/22 to keep coiling stable. They were initially planning craniotomy but changed to stent after doing an MRA on 3/1/22.

I am 36yr old & so far do not seem to have had any complications from the procedures.

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