Need advice - Where to go for a 2nd opinion?

Hi All! I just joined the BAF community yesterday. I recently found out I have multiple brain aneurysms. This was an incidental finding. Due to the shape of my aneurysms, I am told I am not a good candidate for endovascular surgery and I need to do open brain surgery (surgical clipping). I am terrified! I really like my neurosurgeon but I’d like to get another opinion before I decide to undergo surgery. I am 46 and live in ATL. I go to Emory University Hospital. Does anyone have any recommendations as to which university hospital is known for it’s neurosurgery department? I am willing to travel. Thanks in advance!
PB

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Welcome Purva! In Atlanta, Emory is supposed to be top notch. I have a friend that goes to Emory for brain issues other than aneurysms, he hasn’t developed one. You can request second opinions from anywhere in the world just call and request your current images be read. There may be a fee for this, I think @DickD found that it can cost $200 USD. It may be that different surgeons charge different amounts, I don’t really know.

I am biased towards Dr. Quintero-Wolfe at Atrium Health Wake Forest in Winston-Salem North Carolina Stacey Quintero Wolfe, MD | Atrium Health Wake Forest Baptist. She saved my life with her ability to think outside the box! My aneurysm is in a place that common stents couldn’t be used. She found one that could after seven years and I am doing much better than with the other procedures. I know her wonderful NP said she does second opinions all the time.

There is of course, Duke University in Durham North Carolina Cerebrovascular and Skull Base Division | Duke Department of Neurosurgery

The only issue I’ve read here from members who have chosen to have a procedure done in another State is getting follow ups. One I believe had to go to the ER and they refused to do anything because she had her procedure done at Barrows in Arizona, I hope other members will let you know who they like and a link to them.

Thank you so much @Moltroub for sharing your experience! I really appreciate it. I will definitely look into Dr. Quintero-Wolfe. At this point I am looking for a second opinion to understand whether I need to undergo surgery or can I wait and watch? If I absolutely have to undergo surgery then I plan to do it at Emory.
Do you know if there’s a way to learn more about any neurosurgeon, such as how many surgical clippings they have done, success rate, etc. Does the BAF share such data or would I need to ask the doctor directly?
Thank you in advance!

One of the best in the country is Barrow Neurological Institute’s Second Opinion Program. I used them and it is low cost and everything is done online Your Neurological Diagnosis & Treatment | Request A Second Opinion (barrowbrainandspine.com)
If you want to travel to Dallas TX another the best in the country is UT Southwestern Medical. They are also known worldwide for their neurosurgical team. I had my clipping done there and I highly recommend them. I was only in the hospital 3 days for my clipping and stopped at Walmart on the way home from the hospital. It is a big deal surgery but not as bad as we fear. I wasn’t working but could have returned to work in 4 weeks. I was driving in 2 weeks. Getting a 2nd opinion is a very smart plan!

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I’ve never seen it on the BAF and other than the hospital or specific surgeon, I don’t know how to determine the success rate with different procedures. I would imagine asking the surgeon. I don’t think I have ever asked Dr. Q-W as I trust her long experience and vast knowledge. When I ruptured, I lucked out getting her to fix me. Her office number is (336)716-4081 if you choose to use her as a second opinion. I imagine Emory does the same as WFBH and has a team that goes over images to discuss best procedure to use, it’s what she’s done with me I do believe. I also know she uses my images in her classrooms as my aneurysm is rare with all the daughter sacks. If you had seen me before and after the Neuroform Atlas stent was installed you wouldn’t believe the difference! I would be interested in how much they charge. I asked years ago and there wasn’t a charge, but times change. If you find out from the different hospitals, could you please tell us?

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Hello PBATL

I’ve had two Brain aneurysms - Dec 6, 1991 in Atlanta at Northside Hospital (did not rupture).
I was having this really bad headache and I advocated for an angiogram and coincidently they “found” that 1st aneurysm behind my right eye. It was coiled off and never had a problem with it again. I was in the hospital for 3 days, went home to heal and did not need any rehab. So thankful.

Then on Dec 10, 2020 during Covid - I had a bad headache again - went to the doctor in Overland Park, KS and was told it was an chest cold (probably). I went back to that doctor again, on December 12, 2020 - and passed out in their lobby 12-10-2020 - I had a rupture (brain bleed) - in the hospital for 1 month, titanium clip, my Neuro is here in KCMO Research Hospital - Dr. Peter Basta). Top rated. I went to KC Ability for PT/Speech/Etc. for 2 months.
I trust and promote Emory University Hospital, I worked there for 5 years. I do understand why you want a 2nd/3rd opinion. Advocate for you, yes. Keep in mind, that you may need to have follow-ups and being away from home/family/support/familiar surroundings and a empathic team may need to be considered. Keep talking and asking questions. It will be in your best interest, you decide, have those talks and see not only where you will have the surgery, but where you shall have your after care is as important. Will you be able to travel for appointments and anything else you may need?
You got this. God speed.

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Grateful Morning!
I just read your post and it bought back memories of my aneurysm. I was 41 and living in NY at the time. I had a Top surgeon at New York Columbia Presbyterian Hospital. Aneurysms are his speciality and he is the top Dr. I had many fears and understand how you feel. I was referred to him, Dr. Solomon is his name. You can look him up and read all about him. Thankfully he saved me from losing my vision. My aneurysm was in a difficult place. He chose to “wrap” instead of clipping which would have resulted in vision loss. I believe had I not went to Dr. Solomon, my outcome would have been different. I had a failed coiling at a different hospital, that’s how I found him, did my research, made appt. and was very impressed with his expertise. All this I share as I believe a second opinion is best. As I’ve read other responses, be your own advocate, don’t be afraid to seek another opinion. I am now 63, live in ATL, and I’m a survivor! I pray the best for you, and believe you will do fine. Blessings🙏🏽

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Hi @viv22 , Thank you so much for your recommendation! I am amazed that you had such a quick recovery! Very happy for you and your experience gives me hope. I have been so anxious ever since I found out about my aneurysms. Thanks once again for responding to my post. I hope you continue to feel great.

Thank you @Moltroub for sharing Dr. Q-W’s number. You are indeed very lucky to have such a great doctor. So glad you had a great outcome!
I will definitely let you and the group know how much hospitals charge for a second opinion. Thanks again!

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Hello @Noweapon1017 Thank you for responding to my post and sharing your experience. It is so reassuring to know that you trust Emory. If I get surgery, it will definitely be at Emory but I want a second opinion to confirm that surgery is absolutely essential. To tell you the truth, I am terrified of having my brain cut open and I am hoping someone will tell me that it’s ok to wait and watch. :slight_smile: Thanks again! I really appreciate it!

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Good morning @Blessed1! Thank you so much for your recommendation! I will definitely look up Dr. Solomon. Also, thank you for sharing your experience. I am so grateful for this community. I’m trying to stay positive every day and reading everyone’s responses gives me hope. Thank you for your prayers! Much appreciated!

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You might want to ask about Emory if using the Neuroform Atlas Stent would be a viable fix. I know I waited long enough for them to develop it and it’s only about three years old plus the research. One member here was in the study and had it used before me, I think in 2019. I had mine in Dec 2020. Dr Q-W wasn’t wanting to crack my skull open, but I can’t remember why, something to do with me is all I recall. Dr. Q-W said it was develope for hard to reach areas.

Thank you. I will definitely look up dr Solomon for a 2nd opinion.

I too would like a 2nd opinion. Has anyone been diagnosed with a Fusiform aneurysm in the pica region. My doc at Hopkins, dr tamargo, who is very well respected says i don’t need surgery right now and to get an mra in a year. I’m finding it difficult to not be in a constant state of terror. I’m 67 and don’t want my family to have to care for me if I become disabled. It’s very frightening. Any info is appreciated.

Welcome and thanks for posting! We have a few members who have fusiform aneurysms, do a search in the group by using the magnifying glass. There’s been some recent posts in the last couple of months and there are a lot of old posts. You can also look at the Doctor Recommendations here.

For me, the best thing is to stay relaxed by deep breathing, it’s not hard and very helpful. I also try to do at least one thing every day that I enjoy. Remember statistics are in your favor. I recall my Neurosurgeon and my reading on the internet saying most cerebral aneurysms are found incidentally or not at all unless someone has an autopsy. I asked my Neurosurgeon if the person died because of a cerebral aneurysm and she said not usually, it was something else.

With that being said, it sucks to know you have an aneurysm and then have to follow all the rules like keeping your BP under control, managing stress, weight limits etc. Exercise can be beneficial with all that so at least get some walk abouts in everyday. Limit yourself on how much time you focus on your aneurysm so it doesn’t control your life. I do this every day, most days now I don’t think about it.

You can send your images anywhere as previously mentioned in this post. It depends on how far you want to travel and the ability for follow ups. One of the beneficial things that happened with COVID is more and more specialists are using the internet for appointments, but you still have to get images done and/or angiograms. JHH is really highly rated under US News and Report criteria. A member had suggested a while back that they use Castle Connolly https://www.castleconnolly.com/ to see how a doctor is rated by other doctors. Since cerebral aneurysms are rare, the larger the metropolitan area, the more practice they will have. Hopefully a member with experience in Maryland will respond…

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