I was diagnosed with two unruptured brain aneurysms this past December. I also have autoimmune issues which may or may not be related to the annies (still trying to get it all figured out). It scares me knowing that both aneurysms and autoimmune disorders are genetic especially from mother to daughter. My daughter is only six and my neurosurgeon said she doesn’t need an MRI until she’s 21, but I wonder if she should go ahead and get them every couple of years or so? I read about children dying from ruptured aneurysms and it scares me.
Isn’t it enough to have your own aneurysms and then have to worry about your daughter. I can share what went on with me when I ruptured. Our Neurosurgeon told us to tell the nieces and nephews. We did this, well not me as I was still in ICU. My oldest niece told her neurologist as she has migraines. She was told that the next time she has migraines that can’t be controlled, she will be given an MRA. Her son has had a concussion or two, he has had an MRA. They did CT scan. She pushed for MRA. He has no aneurysm but they will keep him monitored. My middle niece has a son who has some neurological issues, his neurologist did the MRA within a couple weeks. No aneurysms detected! My nephew isn’t concerned so he has chosen for him and his children not to ask for any testing.
I think it boils down to is there a reason to order the test so insurance will pay. Not all doctors are convinced there’s a familial connection. It may be easier to do genetic testing on a child so young. From what I’ve read, an MRA can be a bit traumatic for a child as they cannot move during the test. Perhaps you can find a research that addresses the genetic testing.
I have been told the screening should take place 5-10 years prior to your diagnosis.
I’m confused, sometimes a constant state for me, can you elaborate?
If you are referring to my comment. I was told that if there are 2 or more 1st degree relatives with brain aneurysms then your children, siblings, and parents should be screened and insurance will most likely cover. Parents should have theirs done right away. Siblings and your children 5-10 years prior to the age of your 1st diagnosis of a rupture. For example, I was 40 when diagnosed, so if we want to screen whether insurance will cover or not (ours won’t unless there are 2 1st degree relatives with annies) it should be done on siblings and my children between the age of 30 and 35. If siblings are older than that, screening should take place right away. I hope that makes sense.
Yes thank you so much! I just couldn’t figure out the 5-10 years before the diagnosis. You explained it brilliantly!
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I spoke to my neurosurgeon about screening for my kids since my children are 9 and 12. I had a ruptured brain aneurysm in 2005 and had endovascular coiling. In 2011, the coils compressed and I needed a craniotomy since the coils compressed and another aneurysm bulged into the optic nerve. The result from the coil compression is partial 3rd cranial nerve palsey in my right eye. He suggested that my children start getting screened at 21 since they will be more mature to handle the testing and news if they do have an issue. However, he did advise me that if the children complain about headaches or any other symptoms related to a possible brain aneurysm to bring them to a pediatric neurologist to get evaluated. Brain aneurysms and thyroid issues run in my family.
Thanks for sharing that! I would question his age determination. Simply because someone reaches a certain age doesn’t guarantee they will be mature enough. We really need a non invasive, non threatening test for children.
I am comfortable with my neurosurgeon’s age recommendation. In my opinion, it is really up to the individual on how they handle medical news whether it is positive or negative and their support system. I agree with you that there needs to be tests geared more toward children’s comfort levels. However, unfortunately with brain aneurysm tests that can be a challenge in order to get the best results.
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I also inquired with my neurosurgeon about my children, and he said that they don’t like to scan until the are around 20. More because of the exposure than anything. My son just turned 13 and went through an MRI/MRA in October because he was having some headache issues. Because of the family history and a previous concussion, he was sent to a neurologist at Children’s and they ordered the scan. It was clear, and he did ok, but it was a very long test for him at 12 years old. My daughter will get checked either when she is 20 or when/if she has any headache problems. My surgeon even read my sons scans for me on top of the people at children’s just to make me feel better about it.
What a great doctor! What I have read are issues with children and CT scans not MRI/A’s. The CT scans are from what I remember like having 40 xrays at once. It is why the hospitals are supposed to use the lowest possible radiation to read. Here’s a stand from the American College of Radiology. https://www.acr.org/Advocacy-and-Economics/ACR-Position-Statements/CT-Scans-and-Increased-Cancer-Risk
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Very interesting article! I guess I never realized there were different “doses” of exposure with a scan. Thank you for the information!
If I might chime in, I’ve had three brain aneurysms. Two bled, one was caught before it bled. Now my wife and I have two daughters. Do I as a dad, want to run the risk of a bleed in them when a simple scan would answer the question? I wish I could get a doctor to sign off on a preemptive CT or MRI for them so they wouldn’t have to go through the horrible discovery of AVM twice by a bleed! What can be done? I feel your pain and would recommend talking with your doc. I know HHT AVM can be genetically transfered. There is no reason that a parent should have to argue with a doc if known risk can be shown to the doc. Ms. Marianne Clancy with www.curehht.org may be able to guide you. Blessings as you go!
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