Making the right choice

So an un-ruptured aneurysm was discovered two months ago during imaging for my cluster headaches that I have had for 10 years. It is 3.0 x 4.5 in size and is actually two sisters with a neck that is almost as big 2.8. Because it is small I understand there are three choices; observe, coil and clip. I have an appointment next week to discuss our plan of action. I have been researching the different options looking at studies, side effects, recovery time, and follow-up needs. I’m sure my surgeons input will have a great effect on the final decision.

What I would like to ask of the community is for those that had to make the choice, do you still think you made the right choice? And for those that didn’t have the opportunity to make a choice because of the nature of the emergency do you wish they would selected a different treatment option?

I don’t think I could live with the wait and observe option, I think the stress would kill me. So I am currently at a coin flip with the coil or clip options. I see the benefits and drawbacks to both options. Thanks in advance for your responses.

Hey Wizard,
There are so many variables to your question and each individual could/would have totally differing views. Often the location, size and type of annie can all have an impact on the options available. Also the view of each individual surgeon and their recommendations can also determine the course of action. Some Dr’s may well recommend a surgical option, where another may prefer the wait and observe route, especially if it is small.
As for the stresses on the patient, they can be HUGE. Most of us have very little knowledge in regard to brain surgery, so when we are given option A,B or C we really are unsure and personally I have to say giving us such options only adds to our stress. The problem I had with the waiting was that every sensation and I was questioning “Is that my head?..” Surgery is not and should not be undertaken lightly, after all we are talking about the brain. The recovery from brain surgery can be a LONG, SLOW process and I must say I no longer have that question of “Is that my head?..” because I know that, now, it is my head. But it doesn’t make the recovery process any easier.
My only recommendation to you would be to take the advice of your neurosurgeon. They have much more knowledge than you or I regarding the brain. The internet can be a great learning tool, but when it comes to neurosurgery often there is too much conflicting information online. Two individuals can have exactly the same issue, requiring exactly the same surgery but have vastly differing outcomes. Trying to draw parallels can be damn near impossible. I say this as I have had a few neurosurgical operations and no 2 have had the same outcomes nor recoveries.
Best of luck with it all and please do keep us informed of the outcome either way.

Merl from the Moderator Support Team

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Hi, first I’m sorry for the stress of finding this out. Hang in there! I think mod support gave a great response. I also think that once you meet with your neurosurgeon you will have a much clearer picture of what is going on. After my initial MRA which discovered my aneurysm, I needed to then have a CT angiogram and then a cerebral angiogram until it was discovered that coiling was not a option for me due to the shape and location of my aneurysm. For me doing nothing was not an option as I couldn’t imagine worrying about it all the time and I also have 2 little ones so I couldn’t imagine taking that risk. My clipping was in June and it was a great experience as much as brain surgery can be. Make sure you trust your neurosurgeon and then let the team know that you do and go in with a positive attitude. Good luck to you!

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Thank you for your input, this is about the only thing I have thought about for the past week. Being an analytical person all of the what if’s keep popping into my head. While I am not looking forward to either procedure the “which one should I do; is this the right one” and the waiting are really weighing heavily.

Thank you Elizabeth your comments are most helpful. I kind of hope for the same thing to happen to me; we have to do X or Y. Taking the decision out of my hands would be a welcome thing. I guess I’ll just have to wait and see what the doctors say

The waiting to meet with the neurosurgeon is one of the hardest parts! I will say he left it up to me to just watch and wait although he did admit if it were his daughter he would tell her to do it. As soon as I met my neurosurgeon I knew he was my guy and trusted him completely. I hope you feel the same way about yours. Hang in there!

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Hey Wizard,
My initial surgery was an emergency situation so there was no waiting, but my other neurosurgeries have all been planned, well, planned by the medicos, not so much by me. The waiting, waiting was nothing short of awful as I had some idea from the previous of what was coming. I too am overly analytical, which I can assure you is (one of) my curse/s. I tend to pull it all apart and analyse every little bit. And to be honest it only adds to my stress but I still seem to do it every time. I’ve now had the ‘joy’ (not) of enduring 6 neurosurgical procedures and you’d think by now I would have learnt not to do this, but still I do it. So you most definitely are not alone on that count.

It sounds like you neurosurgeon has left it up to you, I’d now suggest you turn it around and ask him “What would you do?” or a bit like Elizabeth “What would you recommend if it was your son or daughter?”

Merl from the Moderator Support Team

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Wow 6, hopefully they have you on a frequent cutters program where they upgrade your room, you get first dibs on the OR, and relaxed visitor hours. I hope all it is all over for you and you can get on to enjoy your life without the interruptions.
At my first appointment with the neurosurgeon she told me “some people don’t do anything but most people either clip or coil (with or without stint)”, she explained both procedures and also explained that some aneurysms with wide necks or are deformed (non-berry like) and require clipping. I got the impression the decision will be mine after getting the test results.
The results of my angiogram looks to me like mine falls in to the latter category and will need either clipping or coiling with a stint. But the 3 week wait to see the neurosurgeon again is killing me. Now that Monday is here I can keep telling myself it’s only next week! I know I just started this life event but I am already ready for it to be over.
I guess the good news is no one has said I wish I had done the other procedure…

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I wish I could say it’s all over for me but, alas, I’m not that lucky. I now have a plastic tube called a shunt to drain the fluid from within my skull (I actually have 2 in there, one that’s working and one that has fractured), these appliances are well known to malfunction and been told there’s a good 80% chance I’ll need further surgery. I also wish there was a frequent cutters programme, (a bit like a frequent flyers program) with room or meal upgrades ie McDonalds everyday lol but that’s not going to happen.
Any phrenologist that tries to read my skull is in for one hell of a violent novel lol

For me, I look at it this way… …sure things are not good. But I spent 20+ years working with people with disabilities, some of the ‘worst case scenarios’ and as selfish as this may sound, at least I’m not ‘there’ in their position. Don’t get me wrong here, I still have those days of ‘Poor me’, especially when I’m in agony, but I know things could be a hell of a lot worse and they are not, for that I have to be thankful, so very thankful.

Merl from the Moderator Support Team

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Good attitude! I hope whatever you need to do in the future will be minimal.

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I didn’t know I had an aneurysm until it ruptured, so my situation was initially emergency related. My aneurysm was coiled after it burst, though they let me know it might need to be clipped in the future. Sure enough, 6 months later I had a cerebral angiogram to check in and all of my doctors recommended getting the clipping surgery. I totally trusted my doctors so I of course went with their recommendation. In a way the brain surgery for clipping was a relief because it was a more permanent fix than the coiling which I would have needed to get checked more often. I hope you have a medical team that you can trust to lead you to the right decision… they know what they are doing!

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Thank you BetterUsethis. My biggest concern with coiling is all the follow-up and the possibility of having to go through everything again. I understand the chances of this happening to others is quite low but it is still there. I am confident with my NS and will follow her direction, 5 days to go…

Found out a bout my aneurism about 4 months prior to surgery. It was a difficult decision to make. I looked at research only and never entered any forums or any other websites. I was very careful to only allow my neurologist voice to be my guide. I asked for her stats, not the stats that were on websites as she was the one performing the surgery. I wrote down all the questions myself and my family had about the recovery and surgery and coiling options. My surgeon preferred the clipping due to where mine was and said the permancy of clipping was a better option for me.
By asking so many questions and discussing my needs as a mother of a young man with autism and in context of my family and career, i felt heard and developed complete trust in her. This is my advice. “
Ask questions feel heard, develop trust in your surgeon. “
All the best. Keep us posted

Anniesurvivor Thank you sounds like good advice. I’ll know in a couple more days but the suspense is killing me…

Now less than 24 hours away from the decision and I have moved from anxiety to fear. I am definitely ready to move forward with treatment. Having had cluster headaches for 10 year and having 2 since finding the aneurysm I know I can’t live with the “is this it” each time I have a headache. I know they say if it breaks it will be the worst headache of your life, but I have had headaches that last for days and I end up on the floor in the fetal position or pacing in circles. These headache laugh at Vicodin. Not sure I would be able to tell one from the other. Trying to keep occupied and keep my mind off it.

Just got a call they are moving my appointment until Friday - Feels like my heart is going to explode.

I have headaches a lot , the doctors sometimes don’t relate it with aneurysm , you may want to check b12 vitamin level , the spine problems can cause it too,or the aneurysm can be the reason of course . Nothing helps a lot to me as well , but I like using peppermint oil putting a drop on the middle of forehead and sides.

May be try to distruct your mind , I found cleaning the house now calming me down , reading a good book also … music helps…the good thing already happened to you , the thing that the aneurysm was discovered is wonderful sign . I am pretty sure doctor will have better picture by the time of your appointment .there are so many aspects why they do coiling in one case and clipping in another . I think it’s hard to make decision before you hear doctor . You probably have been focusing on this a lot, and it’s time to release it a little bit from your mind . May be good idea to rest , get distracted with some pleasent things , like taking a pause . Then you hear doctor and I am sure then the decision will be more clear .

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Thanks for the input.

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I must agree with gk79, finding a distraction is a must. Repeatedly going over and over and over the same thing just sent me crazy (Ok, so more crazy lol). I had to find something to keep my mind occupied. Personally I had a few things to occupy myself with ie walking the wife’s dog, computer games, cleaning my yard, my shed, the house, listening to music, watching TV etc. Having a bit of variety stopped me from getting bored and reverting back to thinking of my head. Sure my head issue was there but by having other things to do I could minimise my over active mind going over and over…

Merl from the Moderator Support Team

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Clipping it is, mine does not lend itself to coiling, so the only decision to be made is when. Waiting on insurance approval and i’ll move on to the next step.

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