so, it’s going to be a year in june since i got my pipeline w/ shield. my first follow up was only an MRA (at 3 months), where everything supposedly looked great and the aneurysm was already occluded.
my next MRA is in a few weeks (it’ll be one year, as i’ve mentioned), but from what i’ve seen on the forums, everyone else seems to get angiograms at six months and at a year. so i’m over here like, why am i so special and/or neglected? their reasoning is that angiograms are risky and they want to minimize the risk, and that MRAs are just as good. maybe they are.
anybody else go about it the same way as they’re going about w me?
I’ve read here where some members never get a follow up MRI/A much less an angiogram. I imagine it’s up to how the doc feels, maybe some are just more cautious than others. My. Neurosurgeon had come from the hospital (Tripler) I was born at and who saved my life from a head injury when I was about 13 months old and was still serving, maybe military doctors are more cautious…I think it’s just my surgeon’s nature. Since yours was occluded right from the start, I’d take that as great news!
For each repair, including my stent. I’ve had a follow up angiogram 6 months after the repair. My little bugger just didn’t want to occlude, I deemed it oppositional. It took the stent procedure to finally hear that she believed she finally got it. Six months later I had my imaging and then the angiogram which didn’t go well for me (severe anaphylactic reaction). It showed I may have some residual bleeding or the blood was there already. I have my follow up MRI/A next month for my pituitary adenoma and a check on the stent.
Where in NC are you located? Very unhappy with the staff & doctor at Raleigh Neurosurgery, but apparently nobody here in Fayetteville does stents for aneurysms (recommended treatment if necessary). Have Medicare Advantage and VA care, so, if necessary, I’m going somewhere else if surgery is needed.
maybe they did the whole mra first and if anything looked weird, they’d’ve done the angio. hmmmm. well, i can only assume they know what they’re doing, since they’re ‘one of the best’ hospitals. but, sigh. i just love worrying.
I just moved from Catawba County to Lincoln County, so the other side of the State. I know Duke does stents and they have an exceptional Neurosurgical unit. You might want to try there. Since I ruptured, I too have Medicare Advantage now. I see Dr. Quintero-Wolfe at Atrium Health Wake Forest Baptist Health (remember when we just called it Baptist?) in Winston-Salem. When I was “fired” from my job after rupture, they let me keep my county badge so we stay at a nice hotel at a major discount, makes it cheaper than the one the hospital recommends with their patient discount. I also have stayed at SECU house which was less than $10 a day but extremely hard to get a room. They have a short bus that goes back and forth to the hospital and the room charge covers it! I know my neighbor has VA benefits and he has to go through the VA in Hickory and let them tell him where he can go. He broke his back. He did get to go to a Neurologist at Baptist instead of driving to Salisbury or up to Black Mountain after they stopped his opioids.
I don’t take stock in “one of the best hospitals”. In fact we just was driving on the Interstate and one of the local hospitals has a sign that says they’re the best. I’ve been there a few times as a patient, family member and county worker over the decades and I can confirm they are not or at least were not. . How do hospitals get their ratings and who gives them?
Worrying isn’t in my oppositional nature much, I just take one day at a time. I don’t like to expend my energy on the what if’s as they are usually out of my control. But I do stupid things since I popped my pipe and BH gets to do all the worrying😂
If you’re having trouble navigating the site, just reach out to me or ModSupport (@Moltroub or @ModSupport) one of us will help. There are three folks in ModSupport, Merl and Ms. Sharon take turns so one of them is on every day and there’s also Mr. Richard who comes to help, he also Moderates the AVM Support group. I’m not on every day right now as we are still trying to unpack and it’s been a nightmare. Luckily, no headache😂
One of the best things to do is use the search magnifying glass for any topic you’re interested in and a plethora of topics and posts will come up. Be mindful of replying to old posts as I haven’t closed them all. I have closed hundreds which means I haven’t put a dent in all of them. You can always start your on topic by going to the home page and clicking on the “+” sign. Just give it a title and put it where you think it should go -General or Support are good places and there’s also Personal Stories. I usually just tell folks to put it under the General tab as they get more responses.
exactly why i put it in quotes! i couldn’t agree more. “one of the best” just usually means they’re getting at making themselves look good. besides, it’s a teaching hospital and the ‘best’ surgeon who was supposed to do my surgery was only present, and some other dude did it, and he only stepped in when the other dude almost f’d up (i know this bc i was wide awake for the flow diverter surgery!)
It’s a darn good thing the doc was near enough to do the job correctly, good for you! I often wonder if ratings are based on survival rate or if for a specific doctor, it’s the number of papers the get published. I think, but don’t know, if it’s also due on the number of surgeries they do. Hospitals in big cities will always get more than the smaller cities or towns, they also get more money because they get more patients and a lot more benefactors. At the teaching hospital I go to, there are only three Neurosurgeons in the Neuro department. I wonder what the larger cities like Raleigh/Durham, Dallas, San Francisco, NY or Boston have. I imagine too that there’s a bit of politics in the medical field as there are in any other field.
It took the stent procedure to finally hear that she believed she finally got it. Six months later I had my imaging and then the angiogram which didn’t go well for me (severe anaphylactic reaction). It showed I may have some residual bleeding or the blood was there already. I have my follow up MRI/A next month for my pituitary adenoma and a check on the stent.