My 40 year old, otherwise very healthy, sister has 3 one centimeter brain aneurysms located in the back of her brain. Her neurologist discovered them when she lost feeling on the left side of her face in mid-Dec. He told her to come back for a follow-up MRI the first week in February; but, in the meantime to resume "normal life" (i.e. comute 30 minutes to work, work, take care of her two kids, etc.). He gave her a large does of steroids to reduce brain swelling at this time, also, to take for one week. Her numbness went away after taking the steroids for a week and she since then she has not had any symptoms.
She went to a neurosurgeon - who I have sine learned is not Board Certified and specializes in pediatrics- that told her he would not/could not operate on any of them. He told her there was no purpose in having follow up MRI in Feb b/c nothing they could do. He also told her that it is not "if" but "when" the aneurysms would erupt, and when they do 50% chance she will die right away and 50% chance she will be "changed" if she does make it to the hospital. He had no bedside manners. So, now she understandably feels defeated and is debating getting her second MRI since her neurosurgeon told her there is nothing that can be done anyways. She thinks she has no options and just has to live life as normal until one ruptures.
1. Should she have a second opinion from a Board certified neurosurgeon who is doing research on the "cutting edge"?
2. Should she get the follow up MRI this week b/c if the aneurysms are growing- should she not consider taking it "easier" - i.e. not working so much, make sure driving ok?
3. Can a neurologist or neurosurgeon predict the chances of when 3 one cm nurseryman will rupture and if she can expect to live many more years without treatment?
4. Anyone know if Duke hospital is known as a great place for this health issue? (We live in NC).
5. Anyone already have list of questions (or suggestions for questions) to ask if she sees a second neurosurgeon in regards to her case form your own experience?
6. Even though she can not afford it, do you think she should take this time off work to pursue this full force? (My mom could help her financially.)
Thank you so much for your input and many prayers/much gratitude for all of you.
PS: She is a mom to school-age children who she loves and adores and is married. Her children do not know what is happening per a child psychologist's recommendation. Also, I changed my user name to "Penny" b/c my sister is keeping her situation confidential.
Hi Penny! There have been several people on here that have gone to Duke before and sung the praises. Use the search feature, put in Duke, and you’ll find a bunch of conversations that mention Duke. Liam gave you wonderful advice, and I’d run with it. A CTA/MRA will give the docs much more info as to the location, size, shape, etc. and I’m floored that an angiogram wasn’t mentioned. I’d totally pursue this. I have a little boy and when mine was found, the only thing on my mind was making sure mommy would continue to be there for him. Prayers to you and your sister in all of this. You are kind to research this for her. I didn’t stumble across this site until after my surgery. There is a ton of great info here in the forum and on the main site which really will walk you through what questions to ask, treatment options, and recovery.
Thank you so much, Tara. You are all so kind to reply and it means so much to have found this supportive group. I plan to tell my sister about it today. It has been almost a week since she met with the rude neurosurgeon, so I am hoping she is ready to start considering second opinions, etc. This group would be great for her, as it is for me as her sister. I love her and her children as much as my own children.
I know your little boy is so proud to have a you as his mom. You are an inspiration and your words/advice so helpful. God bless you and yours~and thank you for your prayers.
I saw 4 different Board Certified surgeons before I decided on which doctor and which course of treatment. Your sister needs to get a second and third opinion. Do a search of top neurosurgeons in NC. Start getting referrals and recommendations. She needs an angiogram to get a much clearer picture of the annie.
Questions-
Where is the aneurysm located? What are the treatment options? What are the risks of the different treatments? How many of x treatments (coiling or clipping) have you done? How many per month?
Thank you so much, Terri! So helpful and very validating. I told her about this website last weekend and hope she will join. It is so comforting and helpful. All the best to you and yours and many prayers, thoughts and much gratitude.