Mods-if this post is in the wrong place, let me know, I’m happy to park it in the right spot.
Soon, I will have my first visit in the US with a neurosurgeon since my ruptured brain aneurysm on 8/4/22. My ruptured happened while traveling in Spain so I no longer have contact with my initial medical team. Are there any specific scans/tests I should request to get a proper baseline as I continue with the recovery process?
Are some scans/tests better than others?
If I’m making requests, I might as well be asking for the gold standard, right!
The doctor I’m seeing was a referral from my general practitioner and could see me the soonest so I’m hoping he’s one of the good guys and I won’t have to shop around.
Thanks in advance fellow survivors for any pro tips you send my way.
So, I don’t know specifically about aneurysms but MRI and CT are uninvasive, good general scans to see what’s going on. For focussing in on an issue to see the detail, a catheter angiogram is kind of the gold standard. However, it is not without risk, so it is always worth the conversation with the doc as to why she or he is choosing one versus the other.
I prefer MRI/MRAs just because of the number of CTs I’ve had. Some surgeons have preferences to which type of image. CTs have radiation, MRs do not. MRI/As are loud, even with the ear plugs (put those in yourself or they won’t seal correctly) but I hear a symphony of city and harbor life.
When I went to a Psychologist to get testing done because my brain wasn’t functioning correctly, he said I could light up the entire county LOL. I’ve learned that both the MRI and the MRA must be ordered as they see different things. They take a bit longer, not much and cost more, some won’t order them. My Neurosurgeon has always ordered them since my release from ICU, never a CT scan. My experience has been get the MRI/As, see Dr, Quintero-Wolfe for the appointment and schedule an angiogram, then another MRI/A. Twice I’ve had an angiogram so she could see my little bugger just to have her go back in a week or two later to fix it. The last one didn’t need the confirmation the MRI/A had showed her all she needed to know.
The gold standard is an angiogram as @DickD mentions and there are an abundance of risks with them. Hopefully your surgeon won’t minimize the risks, some Residents have tried with me and I stop them in their tracks. I have always had a follow up angiogram about six months after the repair angiogram, sometimes sooner depending on what was going on. I was nearing a dozen of them. Coils get compacted, my aneurysm has an enormous amount of daughter sacs, which seemed to me that the coils compacted more readily.
Make a list of questions for the new Neurosurgeon. Ask your wife, family and friends for what they’d like to know as well. It’s helpful because we often get a bit apprehensive when we go to an appointment. Ask if you can record the appointment first thing after introductions is what I’ve learned here. If they allow it, that’s your best way of remembering what they said. If they don’t allow it, make sure you and your wife (I’m assuming she’ll be the one that goes with you) takes good notes. BH can’t take a note to save a life and it was more confusing. If that happens, it’s not a problem to clarify with the surgeon or their assistant what was said. My Neurosurgeon and her NP takes more time with me than any other MD I’ve ever had! I’ve never asked mine if I could record the appointment and wish I had in hindsight. I used to just hand her my phone with notes instead of trying to read them to her, with a stutter it can be difficult to get out and more difficult to follow. But I did learn to use my patient portal and can address questions there. I do that now before the appointment and it makes the appointment much shorter. Either Dr, Quintero-Wolfe answers them or her NP, Ms Ryann and then they go over them during the appointment.
If you don’t understand the Neurosurgeon, do not shake your head in acknowledgement! Tell them you don’t understand and to dumb it down for you. The surgeon shouldn’t be upset with this as they don’t read minds. They can often fall into using medical jargon that unless you have knowledge of it’s like listening to a completely different language that you’re not fluent in. I often suggest to mine that the hospital order her a model brain with the arteries that feed different sections so she could show BH and everyone else that didn’t have the luxury of taking college classes exactly where things are. Unfortunately she doesn’t have one and uses the computer to show the MRI/A results. Next time I see her, I’m going to ask how they teach medical students.
Wow! This is a wealth of knowledge, thanks so much. Asking to record is a great suggestion not to mention all the other useful tips. I’ll be sure to add it to my on-going list of questions. My appointment is in an hour :). I don’t think I’ve ever been more excited to meet with a surgeon!
My physician’s assistant was great, we meet with her on Monday and she made a lot of calls to find a neurosurgeon in network who I can meet with as soon as possible. When my wife tried to find one, the soonest we could get was mid to late Sept.
Great news once again Chris! Sounds like you may see a Neurologist next week, though mid September isn’t far off…Remember to make and take a list of questions and issues, you’ll have more time now to develop one. I am curious if the PA allowed you to record her…and if she scheduled or mentioned a follow up angiogram.