Any advice on how to talk to my children about my condition and their need to be screened?
Hey Seek1ngAnswers,
In all honesty, that really depends on their ages. Informing a preteen vs a teenager vs an adult can require differing approaches, but, personally, at this point I would suggest you need more information. At 3mm and 5mm both are presently considered to be small and therefore less likelihood of rupture, but size is not the only consideration. Location (and surrounding structures) can also play a major role in regard to risk factors.
My suggestion would be to follow through with your MD, obtain a referral to a neurologist or a neurosurgeon to establish the likelihood of a rupture and a possible course of action. Some medicos may recommend a waitânâwatch approach, especially if your symptoms are minimal or the likelihood of rupture is minimal. This is a common approach to monitor any expansion rate. Depending on location If the expansion is minimal, it may be recommended to leave them alone and monitor. This all needs to be established by a neuro.
Now, as for informing your children. Can you call a âFamily meetingâ? Bring everybody together and inform them (Once you have all of the relevant information yourself) all together. I say âall togetherâ so that everybody has the same info at the same time. Informing one before another can create itâs own conflict and the less conflict the better. Having a âFamily meetingâ and informing everybody can also mean that they can support you and each other through this challenging time. I can guarantee there will be a million and one questions, by informing everybody together there will be less likelihood of you needing to answer those same âmillion and one questionsâ multiple times. It can also assist in answering those questions that others hadnât even thought of, as Iâm sure each will have their own questions. From there you can have the âGet yourself screened (as a precaution)â type conversation, but have the recommendation as a conversation rather than it being the âtopicâ. I say this because when I informed family there was shock, panic, OMG sort of reactions, dropping in the line âSo go get a scanâ was only going to add fuel to already panicked situation. I had one family member call me and ask. I told him "âŚif you are concerned ask your Dr for a simple CT/MRI scan⌠âŚit canât hurt to knowâ I also suggested he talk to the other family members. I think some were too scared to ask me, for fear of saying the wrong thing.
Informing my âmarriedâ family was completely different as theyâd had their own âneurosurgical journeyâ the year before. My (now) niece required neurosurgery for a tumour the year before and my (now) wife worked in the disability sector and had done so for about 5 yrs at that point. So they had their own knowledge base to draw from prior to me, making it a little easier.
Merl from the Modsupport Team
I whole heartedly agree with Merl! After I ruptured, BH had to call each family member and let the know that my Neurosurgeon recommended they need to be checked. Whilst we didnât have children I do have nieces and nephews and cousins galore. Itâs really frustrating to deal with all of that and the questions and the incorrect and/or inappropriate responses. We couldnât have a family meeting as I have no family living in the State we live in. Because of the dozens of cousins, we picked a couple to let them know as a âjust in caseâ scenario since Iâm the only one that we know with a cerebral aneurysm. It is frustrating to have to explain to numerous people at different times that there is a difference between having an aneurysm and having a rupture. I have one great nephew that has a lot of issues going on with his brain and his mom, my niece, called and he was scanned right away. She was also scanned. My oldest niece told her neurologist and was told to wait until she had another bad migraine. My oldest nephew blew it off as unimportant to his world and my two remaining siblings also blew it off. Unfortunately my brother had an ischemic stroke about a year or so after I ruptured,
Gather as much information as you can from your specialist as there will be a plethora of questions. Be prepared for some of the family to have quite different reactions. You will know which ones will overreact and which ones wonât react as itâs in their personality anyways. If you canât have a physical meeting due to location, do a zoom or FaceTime meeting with everyone at the same time. We didnât have that ability that I know of back when I ruptured, it would have reduced the stress immensely. However, if you need the support of your children, I would go ahead and let them know and tell them youâll be seeing a specialist and can provide more information after you talk to them. Always take someone with you thatâs good at note taking or has an outstanding memory.
Realizing that thereâs two different camps on rupture size, I can offer that I ruptured with a 5 mm multi-lobed left internal carotid artery aneurysm at the bifurcation. So as Merl mentioned, location and the type had a lot to do with it as can other health issues or lifestyle.
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Thank you and Meri for the advice!
I too have thought that the best way to speak to my children would be all together versus individually. Unfortunately theyâre all in California and my brother is in another province. So we will have to do it via zoom or FaceTime.
I also agree it would be best to have all the information, I can as I anticipate a lot of questions. My children are all in their 40s and my daughter has two children. (I have never been happier that my grandson was adopted and perhaps not at risk for this!) I do worry about my two boys as they are both heavy smokers unfortunately.
My âconfirmingâ CT actually showed 3 aneurysms; 1 on R cerebral artery at 5mm, another @ 4 mm distally on same artery and the 3rd on the L temporal artery @ 3mm. My PCP gave me these results a week ago tomorrow and referred me to a neurosurgeon whom I have yet to hear from. The good news is the neurosurgeon appears to be extremely experienced and has fabulous reviews/recommendations. I am anxiously awaiting his call and then hopefully will have the information needed to make the call with my children, and my brother as less upsetting as possible.
On the other hand, I would like to keep my condition away from my mother, if at all possible as she will soon be turning 98 and has already lost one daughter to this.
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Thanks for asking this question! A quick search showed that there can be a genetic link to aneurysmsâMayo Clinic. That was surprise to me; all my recent ancestors lived into their 90s. Havenât informed my family yet about aneurysm, to save them from worrying, but will have to reconsider.
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