Hi I have a question ? anyone here with an ACOM aneyrysm. I am searching for solutions and treatment. but I keep reading it is the most difficult to treat. I will be nice to know anyone here got treatment for it. I have it in my brain. It will be nice to hear someone has done treatment and doing weel. Please advise. also what is the best hospital in Us to treat this aneurysm? Please help.
Hi. Yes, I had my 6mm ACOM aneurysm treated in 2015. 2 Nueroform Atlas stents in a y-configuration plus 9 coils. Only side effect was nerve pain at femoral artery access site. Opted for wrist access after that for angiograms-much better, at least for me. Swedish Hospita in Denver.
@Noly i don’t have an ACOM, mine is a LICA bifurcation. I thought basilar aneurysms were the rarest, so I had to look it up. I don’t often cite Wiki, but this has a good picture and ratings of aneurysm all types. Intracranial aneurysm - Wikipedia
Seems to me that if they’re the most common, many hospitals will have experience, but I bow to your research and as you stated, they may be the hardest to treat.
I have read where other members have traveled outside their state and then after a repair have had difficulty getting local doctors to look at them. So I’d caution on traveling. That being said, I love my Neurosurgeon, Dr. Stacey Quintero- Wolfe, at WFBH in Winston-Salem. You might also reach out to Duke and Chapel Hill both in NC as well. Then there’s Emory in GA which I understand has a fantastic department. I don’t know their experience with ACOM’s.
I also just had the Neuroform Atlas stent put in back this last December. I think @Susan722 was in the trials for it. This type of stent was just approved by the FDA in 2019. So it’s really new on the market, so to speak. But I think Dr. Wolfe said it can be used in really difficult places and was excited to try it out on me. LOL. My multi-lobed just didn’t want to comply with the different attempts. When my procedure was done, she came and said she believes she got it this time! I will find out tomorrow as my angiogram is scheduled first thing in the morning.
I hope others with ACOMs will provide you with a list of Doctors and I really hope you can get the repair done in FL!
Good luck!
Moltroub
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oh wow , thank you so much for your advice. Excellent. You are correct. I am just looking for the most experience neurosurgeon , I know Mayo and John Hopkins hospital are on the top. I still searching and thinking what to do. thanks so much .
@Noly, you usually find the most experienced at the larger teaching hospitals, I do believe as they get more patients in the door. I did a quick search for FL and this came up Aneurysm | University of Miami Health System
They do have a number of clinical trials going for neurosurgery which suggests to me one of two things, they have an excellent grant writer or are being backed by the companies developing the medical item. You also might try doing a search on US News I think it is that ranks hospitals and doctors. However be cautious as sometimes scores reflect on what patients say. I also ignore magnet status with the RNs, our local is continuously getting these accolades and I think it’s just that they don’t have a high RN turnover, not that the RNs are providing spectacular care.
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Thank you so much for your advise. I am going to search in university of Miami health system . will keep you posted. Thanks for your support!!!
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OH wow , thanks so much Susan. I am glad someone I can chat with the same issues i have. I was told you moved to another state to do your treatment. ? I live in florida and I am thinking in going to baltimore …Hopkins. for treatment. i know they are excellent on treatments and number 1. Do you advised to go to baltimore or to stay here an florida for treatment? Please advise .thank you … nice to meet you !
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Hi Noly,
Nice to meet you too. I didn’t have to leave the state for treatment. In fact I live 5
Minutes from Swedish Hospital, where I had my procedure. I was very lucky in that they have a fantastic neurointerventional program there and get patients from other countries even. But I bet many hospitals do.
So I don’t know how best to advise you on seeking treatment
I don’t know if it is best to travel or not.
Moltraub has good advice. My dr’s nurse told me of their morbidity rate( I think that’s what she called it). It was quite a bit lower than average. That might be something to ask about if you are thinking local. If they participate in a lot of clinical trials I think that is probably a good sign. My team always has 2 docs perform a surgery. Maybe others do that? Pore over their website.
Sending positive vibes🙂
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I know every time I’ve had mine, except once there has been at least two doctors, sometimes three by my side not counting the Nurse anesthetist and another person who always stands right above my head. My Neurosurgeon does the procedure, one of her residents hods pressure on the closure device which has always been through my groin so far…I wish they had another screen so I could watch what she’s doing, just out of curiosity
oh wow. yes. I see you was feeling supported. It is so scary . thanks so much for your story that really makes me feel that there is help out there.
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Hi Susan,
thank you so much for the advise… I really appreciated.
wow , Please keep me posted of your angiogram , sending you a lot of good vibes .
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Hey Noly,
I’ve had 2 ACOM aneurysms. 1 ruptured 1 didn’t. The one that ruptured was coiled 1st…2 times. The 2nd was caught before it could rupture.
My surgeon never mentioned that the Anterior Communicating Artery was hard to treat…either time. I have an incomplete “circle of willis”. And the circle ends at the left side of my ACoA.
Therefore, pressure builds up in that artery and forms, you guessed it…aneurysms. I’ll have to be watched the rest of my life because of this congenital defect.
I had my surgeries at UNC-CH. I lived in that area at the time of the rupture. So…I kind of have a situation similar to yours. I moved between the first and second aneurysms. I now live 3 1/2 - 4 hours away from Chapel Hill.
When the 2nd aneurysm was found via a CT scan I had to go back to UNC-CH to see a surgeon. The surgeon who performed the 1st craniotomy was only doing spinal surgeries so I had a new surgeon. And I adore her. When we decided it needed to be clipped, we made a reservation at a Homewood Suites Hotel in Chapel Hill…to stay in after the surgery until Dr. Sasaki-Adams released me after the surgery. So instead of moving back to the Chapel Hill area…we stayed in a hotel with a kitchenette and a separate bedroom until I was released to live life as usual after my surgery. We probably could’ve gone/found a cheaper route and my spouse and I were pretty flustered by that time. I’m sure most everyone here can understand that. Our main concerns were proximity to the hospital and my comfort for recovery.
The one thing we knew for certain… we weren’t going to move back from Asheville!! So we go back and stay in a hotel, usually the same one for each of my neuro angiograms.
Noly, research your area for a neurosurgeon. I think Moltroub talked about hospitals at Universities being a good bet. I whole heartedly agree.
I have a team of Doctors who work for/With Dr. Sasaki-Adams. They are all involved with my care. When I have a surgery there are a team in the OR with her and me!! When Dr. Solander performs a neuroangiogram…there’s a team with him. The nurse who monitors my blood pressure usually comes and stands by my head and talks to me while they’re preparing to do the angiogram.
I hope you can find someone you’re comfortable with.
Mary
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I forgot to mention that I finally had to have the 1st aneurysm clipped. The aneurysm kept growing because of the pressure mentioned in 1st reply. So I’ve had 2 ACOM aneurysms clipped.
Mary
Hi @Noly,
Ricardo Hanel is at Baptist in Jacksonville, FL. He was previously at Mayo Clinic Jacksonville. Here is a link to the press announcement (2014):
I have a dear friend that works for Penumbra (aneurysm coils, etc), that calls on him, and she says he is one of the best in the country. She has brain aneurysms of her own, and I trust her implicitly. It would obviously be easier to stay in state from both accessibility and cost perspectives, but only you can make the decision about where you want to go.
We are here for you!
Kim
thank you so much for sharing
Hi Mary,
My Pleasure meeting you!. I definitely appreciate all the advice. I had two angiogram ,one in 2018( I had no side effects) and another one just a week ago June 4th. ( I was very dizzy very sick). I definitive going to look for one near my area as I agree with you both that it will be my best pick.
It feels very supportive to know that I am not the only one dealing with this difficult situation.
It was found on 2006… they told me it was few veins together. I followed up with it every year and after few years. They told me it was an aneurysm.
I really feel support from you guys. It make me feel I am not alone.
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wow. amazing story. Please keep in touch. I have seen lot of neurologist and radiologist. and they are just telling me, recommendation is to watch it.
We just need to keep trying ,and searching.
Yeah, we watched both of mine for a good while. Might I suggest possibly finding a neuropsychologist to also talk to. I did and she helped me tremendously with my decisions. Just an option. And…not a necessity.
Good luck and yes…this is a great group of people!!
Mary
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oh of course , thank you for your recommendations. I will start looking for one neuropsychologist now. thanks a lot.