Brain Aneurysm Support Community

Unruptured - Currently waiting - but thinking i should get it clipped

#1

Hello,

7 years ago I was diagnosed with a brain aneurysm. I have been on the watch and wait plan since then. last year I had to switch neurologists (my doc left the the hospital I went to).

I had another angiogram done with the new doc and he suggested I get it repaired due to its shape (wide neck and daughter sacks).

I went to the Mayo clinic and they stated we could operate or wait.

We decided to wait.

A year later - I had the worst migraine of my life, I was vomiting and blood started squirting out of my nose. I really thought “this was it” Went to the ER and had all the scans and they said it hadn’t changed in shape or size in a year.

Now that that headache is gone, I wondered - what if that was a bleed, would I have survived, am I foolish not to get this fixed, did the nose bleed when i was vomiting stop a bleed? I am confused what to do.

I am 47 - fairly healthy (crossfit, runner, biker), non smoker, have a 24 year old and a 6 year old child.

Here is the details of my (one) aneurysm:

Wide-necked aneurysm of the anterior communicating region (2.8 x 3.4 x 2.5 mm)
pointing directly anteriorly with 2 small daughter sacs on the surface of the dome. This
is amenable to endovascular embolization but would require adjunctive technique such
as stent assistance or balloon remodeling.

mayo clinic said clipping is the safest choice, more complications for coiling because of how small it is, I read that sometimes the surgery has complications.

I decided i will see what the doctor says, but most of me wants to get this repaired so i can forget about it.

Thanks for being here. My wife thinks I worry too much and I shouldn’t worry about it especially since it hasn’t changed ins shape or size for 7 years.

I am sending my images to Mayo clinic for their review and suggestion… I suspect he will say the same thing, the rik is about the same.

According to the phase score I have a 1.7% chance of burst in 5 years, however that does not take into account of the two daughter sacs (thin wall bumps) on it.

Not sure what to do…

Thank you and have a blessed day

Dave

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#2

Dave I have been weighing the same choice for the past month or so and have decided to have it clipped. I could opt for a PED but don’t want the follow-up, blood clot risk and blood thinners it requires. I will be having mine done next month. It is very stressful trying to make that decision but once made I found a since of relief. I hope things turn out well for you.

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#3

Thank you, i will say a pray for you. best of luck!

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#4

First, kudos to you for dealing with this for 7 years! I only knew about my aneursym for two and a half months before surgery and I was worried the whole time! I can’t say what the right thing for you is, but I had mine clipped in June and am so grateful to not have to worry about it anymore and with coiling I would have still been worried. I would just say find a neurosurgeon you really trust and go from there. I was very fortunate to have a neurosurgeon I trusted one million percent. After a ct angiogram and cerebral angiogram he realized it was too wide for coiling and at a bifurcation so clipping was best. In the end I’ve had a really good experience. I wish you the best of luck. Hang in there, but you’ve already been doing that for 7 years!

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#5

Hi Dave, only people who are diagnosed with a aneurysm know the real fears & worries that we go through. My aneurysm was found by accident back in 2011, 7.5 mm. Had some vision problem & 1 test led to more invasive tests. I was offered 2 options, 1) wait &watch or 2) clipping. I immediately, within minutes chose the clipping. I was told that a 7.5 was usually the bursting point. What I am getting at is for some people the ‘worry’ aspect just depends on ones personally. One year before I knew I had an aneurysm, 3 people I knew had them. For myself, I felt like I would be walking around with a time bomb waiting to go off. I knew if I did not try to fix it that the stress of having it unfixed would probably do me in, heart attack, stroke or whatever. Not making a joke of it, but I am a worrier. So again, it depends on what a person is able to deal with. Until people walk in another’s shoes they cannot understand. I kind of agree with your wife if there is no change in 7 years and if you feel you can move on without worry, then keep moving. Probably would not hurt to reassure yourself if you could get a 2nd doctors opinion by a new doctor looking at your most recent scan or tests that were done. Just trying to give you my honest opinion having been through the craniotomy/clipping. Best wishes & prayers, Jeanne

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#6

Hi Dave, You are so young to have to deal with this. I know the worry and fear you are living with. I guess, in the end, we just get all the informed medical advise we can and pray for a clear decision to come to light. I personally don’t think I could live with the fear. My aneurysm was 15mm so immediate attention was a no brainer. Simply living with the fear for the 5 days until mine was coiled was almost overwhelming for me. Sending prayers for a clear decision and all things good for you!

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#7

Thank you everyone, I am leaning towards getting it repaired.

Did you all have a good experience? I am a little afraid of having some permanent issues. i am praying for the right decision.

7 years ago - the doc said its too small to operate, so it wasn’t on my mind daily, only when i got headaches. The latest angiogram and new doctor at the local hospital said it needs to be operated because of teh daughter sacs, that indicates a thin wall and usually the bleeds they see have that characteristic. Now I think of it everyday. here is what my doctor at mayo said:

I reviewed Mr. David McClain’s most recent CT angiogram which again confirms the presence of a small anterior communicating artery aneurysm. I do not see any interval change compared to the prior angiogram. However, as indicated in my previous consultation with the patient, given the young age, consideration can be given to treatment of the aneurysm while continuing observation is another reasonable option.

So, I talked to my wife and we are thinking in the fall…

Thank you

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#8

I’ll chime in again and say I know there is a fear of permanent issues, but I’ve had none and no one would ever know I had brain surgery if I don’t tell them. I’m 40 and my kids are 7 and 4 (6 and 3 at the time of my surgery) so that was a big fear of mine but everything went very smoothly and recovery was easier than I had anticipated. At my 2 month follow up my neurosurgeon told me to have a good life and I would not need anymore follow up. I did just see him this past Tuesday to check a bump on my head and turns out it’s just one of my plates protruding a little bit and totally not a big deal. I know how overwhelming it all is but I feel that since you are processing all of this so well beforehand (dealing with your emotions and anxieties and thinking about the risks) that after your surgery you will be in a good place. Before my surgery, my neurosurgeon stared me in the eyes and said you will be completely fine and you are the one that has to believe that. I pass along his words to you. Hang in there!

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#9

Thank you Elizabeth for your positive words, I find them refreshing. I received my surgery date today and so the countdown begins for me. I sure hope to turn out as well as you have.

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#10

Yay on getting your surgery date!! Truly, at least for me the very worst part of it all was the waiting. It was so nerve wracking and I was filled with so much anxiety and it’s hard to feel that no one else understands. You will do great and I’m sure you have a very skilled neurosurgeon. Allow yourself to feel whatever you’re feeling and then just keep smiling :slight_smile: you’re doing great! Truly, pat yourself on the back because this is a big deal.

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#11

And I don’t want to do a disservice to you to paint a rosy picture. I have definitely had low points in my recovery and times of sadness and uncertainty but I am also confident that you will be ok! Also, my biggest piece of advice with recovery is stay hydrated! I was dehydrated after having a bad reaction to pain meds and ended up in the ER which was scary at the time. And heat really affected me. You’re getting through the hardest part right now in my opinion. All will be ok!

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#12

I understand and am not going into this with rose colored glasses. I am hopeful that after a few weeks to months thing will be back to a relative normal.

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#13

I am one week post-op from having an aneurysm clipped and I cannot believe how well I am doing. I am 53 yo female; physically fit, non-smoker. Mine was right over my left eye and grew and changed shape in the last year. Two doctors said I had no option but to have it clipped given these changes. I went with the more experienced doctor at Johns Hopkins and he told my family after surgery that when he went in, he could see the blood in the aneurysm because the walls were that thin. In his estimation, it would have erupted within the year with certainty. I guess my point is – get the dang thing clipped while it is still a choice. You are young and active so I’m guessing your recovery will be like mine (or better). I honestly feel fantastic with no after effects except getting sleepy during the day. Im allowed to start light exercise this week (2 weeks post) and have already been taking walks around the block. The hardest part for me so far is the physical aspects of this GIANT scar across the top of my head – literally from ear to ear. It is gnarly and hurts and I can see people trying not to look at it. It is silly, but vanity is what it is! Like Elizabeth4, I too have had a few moments where I find myself very emotional without a real reason. It is all so overwhelming – but I’m here and feel so lucky this was found and addressed. Do it!!!

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#14

Thank you all so much, I am leaning towards getting it clipped. The surgeon is booked out 3 months.

Wizard - best of luck to you - you got this!

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#15

Dave,

Sounds like you have made the decision and I think it’s a sound one. I’m a 43 year old female and have had both a ruptured one and an unruptured one clipped. I was 23 when the first one ruptured and was extremely lucky to be in the Boston area and get in with the head of Neurosurgery within a day. They did the repair and I was in ICU for 2 weeks because of vasospasm. I had amazing care and am so fortunate for that. 2 years later they did another scan and found 2 more small aneurysms on the other side. They gave me the choice regarding surgery and I opted for it. Apparently, they said from what they could tell my ruptured one was small (< 3mm) and wouldn’t have done surgery if they had seen it because it “shouldn’t” have burst. But it did and I almost died. So I decided not to screw around. During the clipping of the unruptured ones, they hit the optical nerve and the result was that my eye was stuck closed. Other than that, everything went well and I was out of hospital in 3 days (alas, with only one eye, but that healed in 3-4 months and I was good as new.) The surgery was the best thing I did. Every headache seemed to me to be another burst and I couldn’t get any peace. I still have fears but routine scans alleviate my worries. My bottom line was this: a rupture ill definitely kill me or leave me seriously compromised where as the the elective surgery will absolutely fix the problem with minimal risk. I would imagine you have more to risk by not having it done. BTW, did they figure out what the terrible headache was?

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#16

Dave,
Having an unruptured aneurysm clipped is sort of like having elective surgery. Your surgeon isn’t frantically trying to save your life. Your surgeon can take his/her time and make sure everything is done right.
I’ve had a ruptured aneurysm coiled twice and then finally clipped and an unruptured aneurysm clipped. The 2nd one wasn’t a candidate for coiling.
I have an incomplete Circle of Willis. That’s the reason for my aneurysms and why the 1st required so much work. It just kept growing.
Good luck and let us know how it goes.

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#17

Hello KipKate - I too have an incomplete circle of willis, and that is where my aneurysm is located too. I am fortunate I only have one. I believe I have my wife on board to do this surgery. Thanks again everyone.

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#18

I can’t even imagine the anxiety involved in watching and waiting - Prayers for a successful surgery.

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#19

Hi Dave…I have been an absent member for some time…
I personally would consider not waiting - for various reasons you maty want to ask your specialists…like you overall health status - and potential issues that can change over the years…including somethong as basic as an MVA… that even w/seatbelts & head rests in our cars… and/or any other falls/bumps all those unexpected,& unplanned events.
What would your benefit be in waiting and wondering?
Would/could you need more check-ups between…and how much radiation would that include - angio after angio…
Did they also explain what/how the ACoM supplies in the brain & what can be affected under procedure(s)? Ask also the proximmity of the ACAs and your MCAs - and their parent artery - the ICA -
i have no expertise - just my results of coiling.- and after I quit typing I may think of far more potential questions. On the other hand, you may have done all your research and/or the doctors may have explained specifically.
Later will be supplying suggested data on the ICAs and their ‘cavernous’ segment that traverses our ‘cavernous sinus’ in the sphenhoid bone portion of our brain. It took me a long time to ‘spatially comprehend’ these areas
and potential issues - eg - hard right turns - and the left turns - so similar to the hard-right turns of the. arteries coming off the aortic arch.
Dave, i send prayers and blessings for your decisions - and even greater hope that your doctors have alredy explained ‘access’ to you
Regards, patioplans…

.

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#20

Thank you, I have not been instructed what can be effected under the procedure other than:

Of course with every surgery there is a risk associated with it. For a Craniotomy it would include risk of a stroke, surgical site infection, CSF leak, permanent neurological deficits, and death (very low risk of that, however not zero).

I had waited 6 years because the Dr. I had then stated its too small to worry about unless it changed in size. The new Doctor said the daughter sacs are concerning to him and it should be repaired. mayo clinic said its 50/50 and its my choice, so we decided to wait since it has not changed in size or shape.

Since that day the new doctor stated its irregular shape and the PHASE system doesn’t include shape, i have been worried more than usual.

I am thinking the end of August would be a good time to schedule, fitting in with work and vacation plans.

Thanks again for all of these responses, it has helped me a tremendous amount.

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