Brain Aneurysm Support Community

Question I need to ask neurologist

I have my second opinion appointment on Tuesday and I need to write down some questions. I receive my news over the phone via the nurse who said I’m to get another scan in 6 months. I didn’t speak to my doctor so I never got to ask questions about my 2 Aneurysms and honestly I’m not sure what to ask. I am seeing him on the 18th to discuss my situation but meanwhile I’m getting the second opinion on Tuesday. So I get to ask questions and see how they answer and what they think as far as what the next steps will be. I can switch doctor if I decided .

So far all I know is that I have 2 very small Acom Annie’s . The radiologist never picked up on them so I guess there would be no measurements for them.
I thought I had questions to ask ready but never wrote them down and now I have no idea what to ask so this is where you all come in. What should I be asking my brain is just blank .

I would ask what is the risk of rupture at this point at this size , how fast it changing size .

Can you fly , do work outs , any restrictions At this moment …

What will be the scenario if there will be changes in size in 6 months .

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Good to come prepared! 1. what is the plan for monitoring progression, and which tests will be done and how often. 2. What things can I do to reduce the risk of them enlarging? 3. What concerns do you have about any underlying risk factors that I have? 4. What activities or circumstances should I avoid because they might increase the risk of enlargement? 5. What potential symptoms should I be on the look out for? 6. What should I do if I experience a severe headache or a sudden change in vision? Good luck!

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Thank you , I’ll write these down .

I’ll write these down …thank you.
I’m going on a cruise in April next year but feel like I want to cancel it. I’m not comfortable being on a ship in the middle of the ocean when we don’t know how they are going to behave. I’m okay with traveling around the states but not sure I’m willing at this point to go off into the Caribbean.

I was told by someone “you still have to live, you can’t change your life” . Well this is much easier said then done.

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@Midwestgal - all good questions have been thrown out. Dr. Potts is so thorough that he will answer most of your questions before you can ask him. It may help you if you went to YouTube and watch a couple of videos under “Northwestern Medicine” entitled “Behind Better: Inside the OR” featuring Neurosurgery procedures. You can also view pics on his Instagram page and that of his fellow surgeon and mentor Dr. Babak Jahromi’s page as well. You are in good hands!!!

Dr. Jahromi is featured on this one about a recurrent brain aneurysm

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Well the life is changed and different , for me it’s always in my head , sometimes I think I concentrate on that problem the way too much . But at the same time in general I think I calmed down after all and live as usually . The first year it was differerent scenarios in my mind including the worst ones , but I think it helped , I started to feel more relaxed , less fears , like fully accepting the situation .

So after watching the video and giving it some thought I don’t understand why a watch and wait would even be an option.
They remove precancerous colon polyps to prevent cancer yet people have aneurysms that if they rupture 1/3 die before they even make it to a hospital and another 1/3 have a bad outcome…what am I missing? Only 1/3 have success after rupture…why not just go in and take care of it…why would anyone want to just throw the dice and see where they land.
I’m glad I watched it because I will ask that question.

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I have one more question: do the risks of a bad outcome during or after an intervention for the aneurysms exceed the risks of monitoring them?

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A fare question indeed…I’ll be sure to ask.

@Midwestgal - glad you watched the video. As for watch & wait, it was not an option for me due to family history. Of course it is case by case but once you have an angiogram (assuming you go with Dr. Potts), the results will be discussed at the Vascular Conference there at Northwestern. This is where every doctor who in Northwestern deal with aneurysms - Radiologists, Neurosurgeons, Neurologists, Cardiologists, etc get together and review your images and medical profile to determine treatment options with the best outcome, for YOU. So in essence, you will be getting not just a 2nd opinion but a 3rd, 4th, 5th, 6th, and so on out of this conference, IF Northwestern will be doing the angiogram procedure. If you can’t already tell, I love my medical team.:grinning:

I’m a huge fan of Northwestern as my husbands neurologist is there. They were the hospital that saved his life and what’s left of his brain. His neurologist did refer me to both Dr Pots and the one in the video but I’m close to Lutheran General and I like being closer to home and driving down to NW is very stressful for me as I practically lived there for 3 months and have made many trips in between. That being said I kind of always knew I’d be going there for at least a second opinion but now after some thought I think I will just stick there as I do know how wonderful they are and this is my brain.
It’s funny how I’m digesting this piece by piece and having different though outcomes than last week.

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I’m thinking about the doctor I have now nurse had said to me about the size…”Too small to measure “ well that’s just silly Anything no matter how small is measurable! If it protruding from a vessel it’s should be measurable.
I also now want to know what type of aneurysm it is …saccular , fusiform , mycotic or ones more rare.
The way I was told on the phone was unacceptable to me, yes you have two Acom Aneurysms come back in six months, although I do have an appointment with him on the 18th at my request to discuss things.

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I think all the advice and your level thinking is great! The team may not see anything. I’m sure by now you understand the importance of watching and waiting. Remember the statistics are not set in stone. I once asked a doctor where they got their statistics from, he looked at me and said well the board discussed and agreed on it, then he walked away. If you think of the billions of people in the world and then look at rate of rupture, it’s very rare indeed.

Saying that, I too would like you to live your life, to its fullest. Ships are great, ok I’ve only been on one for several hours, complements of the USN and the Lady Lex, but we won our basketball game despite the hurricane. You’ve been given an opportunity to tell the folks you love that you love them. And don’t forget hugs, hugs are great! They increase endorphins which make us feel good. So for those you care for, give them a hug. Sending you a virtual hug right now!

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Best advice I can give is to ask size, see example of size & where located
Ask plan?
Ask risk of rupture?
Why wait 6 months to go back maybe sooner
Signs to look for
Ask if they can b clipped?

I have 1 aneurysm and I didn’t know I had it til I had cerebral hemorrhage & they found it unruptured
So best for dr to do frequent scans
I learned best to ask lots of ? so that u can get answers
Make sure doctor gives u adequate time most drs run in room & out my neurosurgeon is amazing let’s me ask all my ? and never hurries me

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