New member trying to navigate this new reality

Hi everyone, thanks for adding me. I found out 4 weeks ago that I have 2 aneurysms, both on the smaller side. One is 4mm, the other is 1mm. The larger one is of more concern and I’m working with my doctors to decide between coiling and clipping. I’m leaning towards clipping. Even though it’s a more invasive procedure, my doctor explained that there is more control in the case of rupture during the procedure. Also, I had an angiogram about 10 days ago and it was an awful experience. I was told that if I do the coiling, I will need periodic angiograms to keep an eye on everything. For that reason alone, I don’t want the coiling. But would love to hear what others have done, pros and cons, etc. How was recovery for your procedure? Thanks!

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Welcome Erin! I’m pretty familiar with angiograms and sometimes they’re not fun, but if you’re not allergic to the contrast dye, it’s a matter of hydrating properly before and after.

I’ve had coilings with four different procedures. My first was for my rupture. So I’m not sure what he means as obviously they can coil a ruptured aneurysm. The coils compacted and so I had a second procedure within the first six months I think it was. Then a balloon assist with more coils. The last was in Dec 2020 with the NeuroForm Atlas stent. She finally got the little bugger secured.

My aneurysm was small, 5mm, and multi-lobed. She quit counting at 24 daughter sacs. It is also at the LICA bifurcation. She did not want to do a craniotomy because of the location and some other issues but would have if needed when she tried the ballon assist. I cut my hair short just in case.

With my procedures and speaking to others as well as on here, I’ve learned that you absolutely need to trust your surgeon. For me, mine is the best and we often refer people to her. It also depends on which type of procedure your surgeon is the most comfortable with, be it a craniotomy or coils, as well as the location. In the end, we have to trust their judgement. If I had a choice, I’d probably get more than one opinion and want to research how many procedures they have done with no complications. I’d also want to know the length of time I would be under for both types of procedures as anesthesia comes with it’s own risks.

I’ve learned here that some members have issues with the bone plate and the dent that comes with a craniotomy. Most can style their hair to cover the dent. I hope the many members we’ve had that have had craniotomies will tell you their experiences and if they still felt it was the right choice for them.

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Thank you for your response. Along with my current doctor, I’m getting second-third-fourth :slight_smile: opinions as well. So I’m eager to hear what they have to say. I should know more next week.

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You’re welcome! Don’t forget, they will all have their preferred method of repair, some may not even want to repair it yet, and aneurysms are like real estate it’s all about location and type.

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I can only agree with Moltroub’s statement “aneurysms are like real estate it’s all about location and type.” But the surgery can also depend on the ‘real estate agent’ (The surgeon). The first consultant I saw recommended wait’n’watch approach. I had been symptomatic for years, but my symptoms were increasing rapidly. The idea I had this timebomb in my head, but to wait was not what I wanted to hear. So, I got a 2nd opinion. My initial surgeon recommended a craniotomy and I agreed. Since that operation I have had other specialist query why a craniotomy and some state that would not have been the approach they would have taken.

‘The dent’ ? For me, it’s more like dents, I have 9 dents/holes and not enough hair to cover them all. Thank god for baseball caps :wink:

Merl from the Modsupport Team

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I really appreciate all of the input! The larger aneurysm is right in the middle of my head, if you were to point a finger in the middle of your forehead and go four centimeters back. My initial doctor was immediately going to do coiling, but he is an interventional radiologist. He is not a neurosurgeon. My current doctor, a neurosurgeon, is recommending the craniotomy and clipping. I have two other neurosurgeons that I will be talking to and will get their opinion as well.

My current doctor explained to me that clipping is more of a permanent fix. With the coiling, he said it is possible that the aneurysm could still grow and the risk of rupture is still there. And there could be a need to go back in and recoil. Plus, periodic angiograms, no thanks! I had terrible pain every time he injected the dye.

Clipping he said, if done right, will completely get rid of the aneurysm. And I don’t think he was trying to scare me, but he also told me the risk of rupture is there with any procedure and if the skull is open, it would be a much better outcome in the case that it did rupture.

Anyway I know it’s a personal decision and I need to make that decision with all the information that I’ve gathered. Thank you for your input and I appreciate all the advice!

For those that did have the craniotomy, what was the recovery like?

Hi, another “coil-ee” here. I have coils plus 2 stents on a 6mm anterior communicating artery 6 years ago. I’ve had no complications. Curious where was the pain during angiogram? I trusted my doctor’s skill, knowing he has a very low complication rate. If I wasn’t sure of that, it would’ve been a much harder decision. Whatever you choose, chances are it will go well.

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Every time the doctor would inject the dye, I had 3 sensations, in the same order every time. 1) almost like lightning flash across my eyes, like I could see my arteries lighting up, 2) heat and burning in the area where they injected the dye, and 3) radiating pain across my skull. I described this to my doctor after the procedure and he said it was normal. :woman_shrugging:

I do trust my doctor and whichever way we go, I have to believe all will go well.

That does sounds disconcerting! I had a light sedation, maybe that helped me.

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Hi @erinds1222
I had a ruptured aneurysm 18 months ago, the aneurysm was coiled and it needed a second procedure six months later when a stent and more coils were inserted. During that procedure I was completely out, I woke up with my husband and doctor standing by my bedside telling me that it was over and that everything went well.
I had my follow up angiogram last fall, I had a light sedation but I was fully aware of what was happening. I recall the light in my brain as you described it , like a spider net of bright arteries in each of the four quadrants in my brain. I had a slight discomfort in one spot, I told the doctor and he told me that this was the area where the injury was. It only lasted a second or two, then it was gone. I was told this sensation was normal and it was the dye that made it. I trust my Neurointerventional radiologist, he saved my life and many others peoples lives. I think this is the most important part, to have trust. To go through a procedure like this is always stressful and we all have some level of anxiety, the anxiety can spill over to other areas and we can start to question the skill and judgement of the physician.
I hope you can find someone to trust.
I wish you all the best.

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Hello and welcome. I had one ruptured aneurysm clipped. The other two we’re fixed with a flo diverter. Very non invasive. Ask you Dr if you would be a good candidate for the flo diverter

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@erinds1222 I have had the clipping and even though it was more invasive im happy with it so far. So heres my story to help you out in january sometime we dont know when i had an aneurysm rupture on 02/14/21 I had my 2nd ruptured aneurysm I was rushed in for surgery i was 45 when this happened my mom decied on the clip after speaking with my doctor because she was informed that the coils have a tendency to slip and come off with a clip there is less of a chance so she decided clip. Which i feel was a good decision which i was not able to make. So far recovery wise im ok still have some issues due to them rupturing so your situation will be completely different as i have found out thru this group every aneurysm is different for every person but feelings about this situation are real and many people have the same feelings as you. I have learned through this group that what you knew you could do before you can no longer do the same way you used to you have to find a way to do things the best you can tolerate, and always listen to your body, don’t push yourself to be the same as you were because life is different when you have an aneurysm. I have had tow ruptured and now i have found out i have another one that is small so we are watching it. I can tell you that this group will be your salvation you can talk about anything in here and everyone is so extremely helpful. I wish you the best of luck in your decision and please keep us informed on your recovery. May god bless you :pray: :heart:

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I have had a craniotomy on my left side i have the dent that most talk about. i notice it everytime i look in the mirror. At first it bothered me but now it is a reminder of how i have survived the worst thing thats ever happened to me. Its a reminder of how strong i am. I also had to cut my hair which was hard for me I had long hair to my butt but i got used to the short hair it is so much eaiser to take care of, it used to take me an hour to get ready now i just wet my hair brush it and go i love it

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Now, I must also say, I am yet to hear of 2 neuro patients having exactly the same surgery in exactly the same place and coming out the other side experiencing exactly the same outcome. Some people can go through it all, come out the other side with very little in the way of side effects and yet for others the outcome can be catastrophic. For some these effects can be short term, for some they can take a bit longer. So trying to make an exact comparison is impossible

NASTY, nope, BEYOND NASTY.
As I have said to others ‘I didn’t think pain like that existed…’ the headaches… …just WOW
I had some really weird side effects with my senses ie my sight my hearing, smells, touch it all went haywire for a bit. Most things settled but my eyes give me some awful effects, even years later.

Like I say, this is me, these have been some of my experiences. I’ve had dr’s tell me “Ohh, that just can’t be happening…” But it is. My only real suggestion is to go through an elimination process, you never know, one of them might work for you. Eliminate every other option the dr’s give you. If they suggest a way to manage, trial it. If they suggest a medication, trial it. If they suggest another treatment option, give it a go BUT document it all. Which dr’s you’ve seen, their specialization, their reports, scans, etc, etc. When seeing different dr’s we can get sent for test after test after test and sometimes these tests get repeated. Having it all documented can help cutdown on that repetition. It can also show the medico’s that you’re being proactive in your own care. Then when they ask ‘Have you tried ‘X’ as a treatment’ you can respond with a ‘Yes, and here’s the report…’

Merl from the Modsupport Team

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Thanks everyone. Every day since I’ve found out about the aneurysms, I’m leaning more and more that life is just different now. A new normal. I know we are all different but I appreciate the different perspectives. I’m very glad I found this forum :heart:

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I had a craniotomy and clip in June of 2013. Recovery wasn’t too bad considering how invasive the procedure is. I was back to work in about 2 months. I’ve had no issues with the clip. I have a few deficits with short term memory and I lost some peripheral vision but nothing I can’t work around. I write myself a lot of notes. I do have a dent in my head from it. Not too noticeable. A plastic surgeon told me it’s because my jaw muscle is further back on that side now. He said he could make it look better with fillers but I’ve gotten used to it. My hairline is a little further back on that side too. I was 48 when I had the surgery and the surgeon told me clipping was my best option for a permanent fix. I’m a nurse so my best advice is to listen to the surgeon and do your research to decide what is best for you. I hope you have a wonderful outcome no matter what you decide.

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Carl, it’s great to see you posting! Thank you for being a nurse!

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Welcome to our group. I had both coiling and craniotomy. I to remember the angiogram being extremely unpleasant and I was sedated! I am coming up on 21 years of survival, and very grateful. Unfortunately my coiling did not go well, so I had to have craniotomy the following month. Honestly, I was not comfortable with my decision to have the coiling, but was told it was less invasive. It’s not easy to decide, especially when you’re frightened and trying to understand it all. My thoughts and prayers are with you as you journey towards healing. Blessings🙏🏽

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Greetings Carl!
You are the first person to share that you have a difference in your hairline. On the side of my craniotomy, mine is further back as well. It is a bit disturbing as I always thought it was my perception. I have cognitive deficits as a result of my stroke during my coiling. I can remember the 1st time they got me up to walk, I couldn’t walk a strat path. I was severly going to the left. It’s much better now, but I still veer to the left. What appears strait to me, in reality isn’t. All to say, I always thought this was the reason my hairline looked “off” Not a big deal, as I survived!
I choose to keep my hair short, as through the years I suffered hair loss. May 21 2022 will be 21 years since my coiling and stroke. My craniotomy was June 26 2001. I call that my birthday in addition to the day I was born. Wishing you continued Health and Blessings!

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So sorry about your news. Although, I’m so happy too hear you have a plan.
I’m in agreement with how painful an angiogram is. My Dr., acted like it was just me. I’ve had four in the groin (two on each side), and one in the wrist. I have an internal carotid aneurysm on the left side which cannot be repaired.
Again, I’m happy yours can be repaired and my prayers :pray: are with you and your family and friends.
Beverly M

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