Questions regarding coiling, strokes and decisions regarding treatment

General
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Hi there. Five months after my third coiling and second stent for an aneurysm that ruptured in 2018, l got the news yesterday that my case was discussed in rounds and the consensus was that l should have a second, unruptured aneurysm coiled. This is a total 180 to the ‘unless it grows, we’ll just monitor it’ approach that was recommended until now. It hasn’t grown at all so l’m puzzled and frustrated by the news that the group wisdom now is to coil it. I’m also more gun shy about any procedure as l had three small strokes during the last one. I’m wondering if that means I’m at increased risk for strokes with new procedures. Does anyone know if some tend to lead to.more?

Also wondering what folks have decided on the ‘to coil or not to coil? That is the question’ debate. Do l let it ride and hope for the best or be proactive and risk more strokes and Heaven knows what else in terms of complications?

Thanks in advance for your input.

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Goodness @Cat i think you’re ahead of me on timeline of having recoils. Dr. Quintero-Wolfe down here in NC, just put a stent into my LICA bifurcation and it seems to be working really well. Ok, not seems, it is working extremely well since this is the first time the neck has been secured. I know having an ischemic stroke is one of the things that can go wrong during an angiogram. I’m not sure if it’s caused by the catheter, or the anesthesia, though, perhaps both. I do know that anesthesiologists always have to tell a patient that ischemic strokes are a risk for anyone going under, so I lean to the anesthesia. But best to ask your doctor that one. My team uses less and less anesthesia every time I have an angiogram according to my neurosurgeon. I do better with less, not more.

A couple other questions I would ask your doctor would be if having three ischemic strokes on the table, does it put you at higher risk for another? If so, how are they going to try to prevent it. The big resounding question is on the “doing rounds”. Was this with other Neurosurgeons, or the Residents? That may be the difference, but ask for clarification. There may have been discussion on if the rupture of one puts the next at higher odds of rupturing, I’ve read that many times in research papers but I don’t know the statistics or where to find it right now. Another question would be what, if anything, has changed in medical knowledge in the last three years. It changes a tremendous amount quickly. That was more than a couple of questions LOL

As for to coil or not to coil? I’ve only been coiled, four times to be exact. The third was with a balloon assist, the last in December was with the Neuroform Atlas Stent. I get to say I’m a caged wired airhead now…Since I’m still walking on the grass and not feeding the roots, my vote goes towards coiling. I do know that my Neurosurgeon said for the third procedure, she may have to do a craniotomy, despite me cutting my hair short, it didn’t happen. She did share when I asked her about craniotomy that she wanted to keep her options open. There are higher risks when they pop open your skull, one of the biggest, I think, is infection but it could be several other things.

So make a list, get on your portal or wait for the next appointment and ask your questions to the person who’s going to do the work. Take someone with you who takes great notes to jot the answers down correctly. BH can’t take a decent note for love nor money and we got into a small tiff about it when I tried to read them. I fired BH from taking anymore…this was between procedure 1 and 2 which feels like eons ago but only about seven years.

Hoping others chime in, I do love an active topic!
Moltroub

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Hi there Moltoub, and thank you for your quick reply. She did make a point of telling me the rounds were comprised of all the brain doctors in town, not residents. They have told me since the second aneurysm was discovered that I am at a higher risk because I had one that had already ruptured. Apparently that risk increases by 0.68 percent per year. So in 2028, the risk will be just under 7%, the same risk associated with the coiling. By the time I’ve had it 30 years, and I’ll be 83, it will be about a 20% risk. Also, the second one is at the back of my brain, which is apparently more dangerous. Just to clarify, my debate is between coiling and doing nothing, not coiling and craniotomy. I think I am coming around more to the idea of getting it done, but I love your suggestion of asking what they can do to prevent a stroke, as well as whether I’m at higher risk of one now that I’ve had some during a procedure.

I have a dear friend with me always when I speak to the medical folks. Her memory is fantastic and she asks excellent questions.

I guess at the end of the day I’m just mad that I have to have yet another surgery/procedure. I just want all this to go away and be done. I’m sure you can relate.

Best wishes.

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You’re welcome @Cat I get confused when members talk about back of brain, etc. Are both your aneurysms in the Circle of Willis?

Best,
Moltroub

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Not sure what that is. Apparently the one that ruptured is more in the middle.

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Hi @Cat,
We now know that there are several environmental risk factors for ischemic and hemorrhagic strokes, with smoking being the main one followed by hypertension. Do you know if your mini strokes during surgery were ischemic or hemorrhagic? I am guessing ischemic? The best thing you can do is keep your blood pressure under control and to stop smoking if you do. I would also ask your neurosurgeon why coiling and why not flow diversion? Flow diverters do not “touch” the aneurysm so the risk of rupture during surgery is greatly reduced. They do not compact like coils do, so the need for an additional procedure is also much lower. I have a FRED flow diverter that was just put in this past April. Flow diverters are done via endovascular procedures not open surgery. The recovery was pretty easy compared to my craniotomy.

phoenix33

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Thanks for your input. I will ask about the flow diverter. I wasn’t aware of that possibility. The strokes were ischemic. I haven’t smoked for decades and am on meds to keep the bp in line. Just bad luck l had them l guess.

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I am so sorry you are dealing with all of this. I am so glad you stopped smoking and are on meds to control your BP. You are doing all of the right things! Do you monitor your BP at home? I do that as often as I remember. Mine runs on the low side and sometimes I feel like I am going to pass out. II have a connective tissue disorder (that’s why I have low BP) and a strong family history for aneurysms. We are all just doing the best we can!

Hugs,
phoenix33

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@Cat here’s some information on the Circle of Willis Neuroanatomy, Circle of Willis - StatPearls - NCBI Bookshelf

Because I like pictures here is one Circle of Willis: MedlinePlus Medical Encyclopedia Image

With the picture, the brain is upside down or turned over. It may help you understand your doctor better if you’re able to learn it. Don’t let your surgeon talk over your head, have him explain it at your level. Many of our members know the exact artery, location, etc and should you be able to find out yours, it would open you to more support I believe.

I’m also going to challenge @phoenix in what they know about the cause….it’s ok, we challenge each other constantly, almost like we are family…there are many things that might cause aneurysms here are some more… https://www.medicinenet.com/brain_aneurysm/article.htm

I recall when I ruptured that my neurosurgeon said they hadn’t figured out any cause as yet. As we know everyone in medicine points a finger to drugs, drinking, smoking, high blood pressure. While these certainly aren’t healthy and can do a good bit of damage, I’ve never read they are at the root cause, though they probably do exacerbate things. Since I’ve had a few concussions, I lean towards the head trauma theory…there is also a phenomenal amount of research being done on genetic links, but no one that I know in my family tree ever had one. I’ve never had high BP, except when medically induced or in a good amount of pain. It’s my “tell” when I go to my PCP. After all these years, she doesn’t start on diet, etc…just says “So, where are you hurting?”LOL

As @phoenix33 commented, we have a lot of members with flow diverters, they are very popular here. I always forget about them because my aneurysm is at a split (bifurcation) and it wasn’t a possibility for me, and apparently a clip had a higher chance of failing where it would have to be placed.

If you decide to do some internet researching, stay with trusted known sources. The research can get a bit confusing, as some can seem to contradict each other, but a lot of us can help you out with some of the things you don’t understand.

Best,
Moltroub

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Thank you! It’s a basular tip aneurysm. The picture reminded me. I am definitely going to ask about a flow diverter. Sounds far preferable to, and simpler than coiling. Thanks for the support you have already given. Much appreciated!

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Here’s a couple of articles I found on line, the first is older but does give a good explanation The Advent of Flow Diversion and Its Implications for Cerebral Aneurysm Treatment - Endovascular Today

This is new and explains all the different types etc. https://jnis.bmj.com/content/13/1/54

All the best,
Moltroub

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Thank you again. Reading about it all tends to freak me out a little but it’s great to have the info.

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@Cat why do you feel it’s freaking you out? Too much information? I really don’t want anyone to be freaking out. In the end, your surgeon will do what they are most comfortable with. If you have more questions on the flow diverter, @phoenix33 knows a good deal more than I, as do many other members…just ask either she will answer or I can do some research or hopefully other members can share their experiences.

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@Cat please try not to worry! I agree with @Moltroub that your surgeon will be the best person to determine which treatment is appropriate for you. Even if you have coiling done, there is a decent chance your coils will NOT compact with this one, requiring an additional procedure. They are improving technology almost on a daily basis, and while I am not a coiling expert, I can tell you the flow diverters have come a long way since the PED (Pipeline Embolization Device).

Did your surgeon tell you the strokes were directly correlated to the procedure itself?

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Thank you to you both for your support and encouragement. I’ve always been a bit squeamish about any inside-the-body intervention details, hence the freaking out comment.

I’m supposed to have an angiogram soon to check on the first aneurysm, and then there will be another conversation about about treating the second aneurysm. I’m coming around to the idea, even if still very nervous about another invasive procedure. I have a call in to my physiatrist to talk about how soon this is feasible given that l’m still recovering from the January procedure and associated strokes, and am still quite symptomatic. I’m sure l’m not alone in this group in feeling somewhat fed up with it all and just wanting things to be stable. I’d love to feel relatively safe and not have to worry about the second one rupturing, so that tells me an additional procedure maybe isn’t a bad idea. It’s a process in terms of comfort level, and l’m glad l have some long- distance friends here to hear me out as l go through it.

Many thanks once again.

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@Cat now I get it, thanks! I’m really odd and my last procedure, I asked so many questions to the Resident, some young man came up to me and told me to stop so she could concentrate. Of course, that only stopped me for a few seconds, I cannot shut my chatter box off. Luckily for all of us, my neurosurgeon came in…:rofl:

I’ve had many, many angiograms through the groin (femoral) and one through the wrist (radial). I prefer the radial entry as it’s less restrictive and I didn’t have to be in hospital all day, just a couple hours after the procedure!

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@Moltroub if I can’t shut off my chatter box either, do you think our neurosurgeons flipped our chatter box button to the on position? John is asking if the next time they are in there, could it please be turned off. :rofl:

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Sorry to hear about your issues. in 2016 I had a brain aneurysm burst, and had a platinum coil placed as part of the procedure. I then discovered that I have a second aneurysm on the opposite part of my brain, which the surgeon wanted to operate on, about 5-6 months after my first op, when I was still getting over the first. The neurologist has been checking on it every year via an MRI, thankfully, it has been stable since my original op on the opposite side, and they don’t want to see me for another 5 years to have another MRI, so my op has been postponed as it is unchanged, stable.

I don’t know if it is coincidence, but I saw an alternative (nutritionist), as the Drs, neurologist said there was nothing I could do to control it apart from controlling my BP and stress level, and I may need tablets for this, so I started taking more vitamin C, antioxidants, Bioflavanoids, and generally eating healthily: Mediterranean Diet, and various other actions, including relaxing, meditational activities, and gentle exercise, food based to keep a gentle fluid, blood circulation flow, keeping my BP level etc.

I wouldn’t let it worry you about the results been no change, it just means that it is stable and not moving or increasing, (if anything you should be thankful, and I am happy that it is stable). However, like you, I cannot understand why they want to coil it, if it is stable, especially after the complications. You could always ask them why they wish to operate when it is stable, and especially after your last complications?

When I saw my neurologist, he knew that I wasn’t totally comfortable with an op, so he said that he would check it every year from an MRI, but I had to be prepared to take the op if it increased, but he stated that he wouldn’t operate if I was unsure whilst it is stable. I also asked about the side effects of an operation on my other side which would be with a metal stent if I did have it, and was told that I would need to take an aspirin a day for about a year, and a low blood thinner to keep the blood flow, but there was a low risk of a stroke, (hence the reason for the blood thinners). Thankfully my aneurysm seems to be stable, and thankfully I am on no tablets.

To be honest, I cannot tell you what to do, this is up to you. I know I did a lot of crying, and suffered depression after realising what had happened, as well as suffering various other after effects that I was unprepared for, but thankfully this didn’t include a stroke during the op as far as I know, (although much of being in hospital in ICU is a blur)…

After doing a lot of inner self searching and praying, I started asking the neurologists questions, when I was getting better, and what I didn’t ask a relative asked when they went with me for support, as they knew that I was worried about many things, including any side effects of the operation, possible other operation for my other aneurysm, any tablets I would have to take after the other op, any after care, as well as the results of my MRIs etc.

On a personal need, I weighed the pros and cons of not having the op and having the op, and thankfully I had an understanding neurologist, so I decided to postpone it, and try controlling the aneurysm, and thankfully it seems to be working.

Everyone is different, but you are not alone with an aneurysm.
I hope you can workout what to do, but make sure that is is what is best for you, whatever you decide, good luck.

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TO CAT. I had a very small 3mm cerebral aneurysm which had a very slim chance of rupture. I only discovered it after it ruptured. I had low blood pressure, no other health problems and the doctors told me that if they had discovered it before it ruptured they would have told me to wait. Please dont take any chances - its your life, get it coiled.

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Be very careful what vitamins you put in your mouth. Some of them are blood thinners which are not good for aneurysms. My aneurysm burst after I had been taking gingko as it was supposed to be the miracle herb. It is a potent blood thinner. I dont take any vitamins now as some of them are very potent and dangerous in certain circumstances. Just eat healthy and exercise. Bin the vitamins.