I am new to the group. Looking for recommendations for doctors in the U.S. specializing in endoscopic pipeline stenting (a/k/a flow diversion). Hoping to find the top ones in the field. The two names I have seen the most are Dr. Michael Lawton at Barrow in Phoenix (although I am not sure that he specializes in the endoscopic stenting) and Dr. Peter Kim Nelson at NYU. Thanks to the group.
Thank you for creating your first topic Tommy, well done!
Have you checked the list on the recommended doctors by using the search feature? There are many types of stents now depending on the location and type of aneurysm one has,. I know some of our members have had issues with going to another State and then trying to get follow ups in the area which they reside. We also have members who have traveled, so I guess it’s all about the neurosurgeons in the area one lives.
Since you’re in Louisiana have you tried looking at Emory in Georgia, or Duke in North Carolina? Trying to keep you in the South apparently, less miles to travel. Duke is supposed to be the best here in NC, I was treated at what is now a mouth full -Atrium Health Wake Forest Baptist Medical Center. But us locals just have always called it Baptist, before Atrium got involved. Dr. Stacey Quintero Wolfe put a stent called a NeuroForm Atlas Stent my location is not a candidate for a FRED. There’s a bunch more different types for different types and locations of aneurysms.
Curious to find out why you feel a stent is in order, if you don’t mind my asking?
Thank you for the feedback. I am not sure that a stent is in order. In fact, doing nothing and just monitoring things very well could be the best approach. I am trying to get ahead of the game to get educated on the options.
The unruptured aneurysm is only 3mm and is in the left side of the intra-cavernous region. I have heard that endoscopic stenting can be a good option for that location.
I have also seen that the endoscopic stenting is done by a variety of specialists, not just neurosurgeons. I would like to consult with some of the top experts in the field so that I will feel more confident about our decision.
I get it. You can send the images to the different doctors, some will charge, some won’t. I’m unsure what happened to the recommend a doctor category, but if you do a search on doctor recommendations you’ll find several. I will ask our ModSupport folks about the location, perhaps they will know.
What I’ve learned here is different doctors like different methods of repairing. When I first started there was definitely two different camps - endovascular vs. craniotomy. At one time Barlow in AZ was highly recommended because they had the doctor who invented the FRED I believe. He retired.
If you do a search on the ICCAA, make sure you’re staying within the last 3-5 years as medicaL science keeps gaining more and more knowledge. I’m curious is the the one you saw that lead you to think pipelines were good? Cavernous Sinus Aneurysm - StatPearls - NCBI Bookshelf
I don’t recall where I first saw a comment that endovascular pipeline stenting was a really good option. I recently spoke with an older neurosurgeon who seemed to think that endovascular was generally better because it is less risky. That same comment was made to me by a current 4th year medical student who is about to start a neurosurgical residency.
I am definitely in the learning phase of all of this. The more information the better.
Good advice on staying within the past 3-5 years. I see that medical science seems to be rapidly evolving in this field.
It is true endovascular methods have less risk per everything I’ve read, but remember sometimes coils compact and obviously the risks are there starting with anesthesia. To the best of my knowledge, coils and stents are used together. I’m going to ask my neurosurgeon how many coils she’s used as it’s never been in my charts that I’ve read.
I’ve had good luck with physicians of all my issues as they interestingly have all been Fellows, even my PCP was a Fellow. The difference in care is quite noticeable. That may be something else to look at. Fellows are generally at the top of their class and get a couple of extra years in university which relates to more supervised hands on surgery to me, although I may be wrong.
@Moltroub, by any chance, are you thinking about this topic?
@TRJ, I have 3 coils and a pipeline stent as a result of my ruptured aneursym. My neuroradiologist is the one who placed my stent, as opposed to my neurosurgeon who handled some of my other brain surgeries.
If it helps, you may be interested in some BAF archived webinars …presuming. you have not seen already (!). Ones that caught my eye that might be of interest relate to choosing the right doctor for treatment (Latest Updates - Brain Aneurysm Foundation), as well as one on dealing with watching and waiting
Living with a Brain Aneurysm Diagnosis: Struggles of Watching and Waiting - Brain Aneurysm Foundation.
Please let us know what we can do to support you both!
Fin Whale Fan 
P.S. You will see in the postings in te Recommendations, but I included my team. Direct link if that helps!
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Hello and welcome. I have four flow diverters so I’m somewhat familiar with them. You are looking for either an interventional radiologist or a neurosurgeon. Both are highly qualified. The main difference to us as patients is that an interventional radiologist does not do open surgery. A neurosurgeon tends to do both. At some very large institutions you may find that some specialize in one over the other so you may be referred between two surgeons, but most neurosurgeons are educated in, and are qualified to do both.
Having said that, there are some fabulous interventional radiologists. You mention Dr Peter Nelson. He is an interventional radiologist who was a pioneer in advancing the use of flow diversion and has made significant contributions to the science. He is frequently sought-after for complicated cases. I’ve heard Dr Lawton’s name as well. If Boston is a good locale for you, I’ve also heard wonderful things about Dr Ogilvy, Director of Endovascular and Operative Neurovascular Surgery, BIDMC Brain Aneurysm Institute, Harvard Medical School. His patients absolutely love him. I don’t have a name at Johns Hopkins, but it is reputed to be a great place for treatment.
Both interventional radiologists and neurosurgeons are qualified to determine which endovascular procedure is most suited due to the location and morphology of an aneurysm, and you will find wonderful surgeons everywhere. Any hospital with a neurosurgical staff will have surgeons that jump in and save lives as patients arrive with ruptures. However, I understand your quest for those that do these all day every day. I felt the same. They are definitely well equipped to handle whatever comes their way.
When I was first diagnosed I consulted surgeons at 3 institutions; one local, two out of town. All agreed on the flow divertor. In the end, I chose an institution and surgeon out of town, but drivable. I’m glad I did because my surgery did not go as smoothly as anticipated and I don’t know when I would felt I could handle flying home. As it was, I was in the hospital a few days, then in an adjacent hotel for a few more, then we ventured home. A plane ride then, and with the more frequent than anticipated follow ups would have proved difficult. However, many take that route and don’t experience a problem. They hop on a plane and head home without incident. You’ll ultimately have to go with your gut.
As for follow up, be aware that the most “permanent” fix is open surgery. Endovascular will require follow up at various intervals depending on how things go. Typically at 6 months, then one year, then the rest is up to the surgeon and your outcome. You will likely be in this for the long haul, but it gets easier and more routine as time goes by. Eventually if she hits MRA’s only, it gets much, much, easier.
I used US News to help locate the institutions of choice. I began there because these facilities will have the best equipped neurosurgical suites and a host of qualified surgeons who can assist each other when needed: Best Hospitals for Neurology & Neurosurgery | US News Rankings
If you find any on this list that appeal to you, you can then put out some feelers for particular surgeons.
Best of luck to you both. I read your bio…your wife is lucky to have your help. My husband pulled me through the whole 3 year blur, and has remained by my side for follow ups in recent years. I don’t know what I would have done without him.
Judi
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You have gotten so much good advice by my brain aneurysm friends. I was one of those people who ruptured without knowing that I had a brain aneurysm. You can read about that in my bio. When I was told that I needed a second surgery after the rupture to finally close the aneurysm, my neuro radiologist, who saved my life told me that he was planning on using a flow diversion stent and that the procedure would be "a walk in the park " compared with what I had gone through.
He also said that it is called a minimal invasive procedure.
I ended up with a regular stent instead of the flow diversion stent ,he said that he changed his mind and I don’t remember why I guess it had something to do with the shape of my artery. It was a successful surgery and it wasn’t as bad as I had thought. It was such a relief to have the aneurysm finally being fixed. I had my rupture 5 1/2 years ago and the stent 5 years ago.
Good luck with everything going forward.
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Yes thank you so much!
Thank you so much, Judi. This is very helpful. I really appreciate your insight.
Thank you. I am glad to see you are doing well.
I had a left ICA anerysum that was monitored for 7 years and then had a full metal jacket stent (flow diversion) done this past august. Dr. Alexander Coon in Tucson AZ performed the procedure. Dr. Christopher Roark in Denver CO is good also, my aunt has had several treated by him.
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