Glad to have found this community and looking forward to playing my part in it!
It’s still so early in my discovery that it doesn’t seem entirely real to me… I was diagnosed with a 5mm wide neck aneurysm with two daughter pouches each 1-2mm on my left internal carotid artery. I had a cerebral angiogram on Wednesday, all went well for the procedure and I worked from home the next day/was in the office on Friday. I’ve yet to hear what my neurosurgeon is recommending as a treatment plan but am reading about flow diverters and stents (I’m guessing this will be the direction due to the aneurysm being wide necked).
Does anyone have resources (medical research papers for example) that they have found particularly useful for a newly diagnosed patient?
Thanks for reading
Aneurysm is a potentially a life threatening medical issue so it is great that you are trying to take control of your situation. In my case, I had a ruptured aneurysm so I did not have the opportunity to take care of it prior to rupture. I do not know where you live but my advice is finding a hospital where there is high volume of aneurysm procedures associated with a top Neurosurgeon. There is statistics showing success difference between hospitals that specializes in treating aneurysm vs local community hospitals. In the West Coast, UCSF and Barrow Neurological Institute are the top hospitals. In the East Coast, it is the hospitals in Boston and NYC. For research papers, you can find articles in PED (Pipeline), Stents, and flow diverters in Journal of NeuroSurgery but they are medical articles.
Thanks for the reply! I live in Chicago, and so far have been to the Neuro department of Northwestern Hospital. Thanks for the tip on checking performance statistics. In terms of hospitals in Chicago there’s strong competition (Northwestern, University of Chicago, Loyola, University of Illinois). The approach at Northwestern is that the entire interventional radiology and neurosurgery faculty review angiogram results together and collectively decide on a recommendation for treatment or monitoring. I was reassured when I heard that as to me it suggested that you automatically get a second/third opinion without going outside of the hospital system. My neurosurgeon is Matthew Potts http://www.feinberg.northwestern.edu/faculty-profiles/az/profile.html?xid=33716
The approach at Northwestern is exactly the approach that the hospital of excellence would take as explained at a lecture at UCSF. There are different approaches (coiling clipping, coiling with stent, Pipeline), technology of stent or pipeline, etc. It is great that the entire team is reviewing your case so there is no bias in one approach. My ruptured aneurysm was a rare one as it was located in VA-PICA (only 1-2%) located by the brainstem. It was also wide neck (10mm x 5 mm) I was lucky as my NeuroSurgeon specialty is neck/brain and was skilled in both traditional and endovascular approach. He saved my life. It sounds like you are in good hands. Good luck
Awesome. Thanks for this.
I am 44 and also had a 5mm wide neck aneurysm on my left ICA. It was discovered last May due to symptoms I had been having. I also have one on the right ICA. Like you, I consider myself extremely blessed to have discovered this before rupture. Surgery was performed right away. I had a pipeline and coiling. My 6 month MRA showed that that particular aneurysm was gone and the pipeline has become part of my anatomy. I still experience some symptoms such as headaches and that is scary but I am very thankful for an awesome surgeon and the development of the pipeline device. Please do not hesitate to ask any questions because I remember how it felt in the beginning.
I will get my treatment recommendation this coming Monday. So far I know it
will be endovascular (which I feel for me is a good outcome as an extended
period of absence from work would be difficult). I understand they have a
few options on how to proceed. From what I’ve read I’m expecting to hear
about flow diversion, stents, and coiling. It’s still all so unreal to be
honest, but I’ve moved beyond the initial shock and am now dealing with it
as a problem to research and a decision to make based what is likely to
have the best outcome. If I do that then I should be able to live with
knowing I have done the best I can to prevent a rupture.
I think it’s harder on my family and parents/sibling (I have told my
in-laws and my parents and brother). My wife asked me if she could talk to
her friends about it and so far I have said no. I understand that this is
an enormous thing in her mind right now and its difficult that I have asked
her to keep quiet about it rather than being able to lean on her friends
for support. I have asked her not to talk about it because I worry about it
getting out to a wider group of people that have a connection to my work. I
just can’t see a positive angle to sharing details of my condition with a
wider group of people. Am I wrong to take this stance?
I’m really interested in how you (and others!) have approached sharing
information with friends/family/extended family/others…
As I reflect on my own life threatening experience with a ruptured aneurysm, I reflect on the medical technology which has advanced in the past decades improving the life expectancy and recovery for aneurysm cases. Prior to the MRI and CT technology developed in the 1970s, a spinal tap was the diagnostic method that patient had an aneurysm rupture and SAH. in the 1980-90s, the endovascular cranial surgery was being perfected starting from coiling, stent assisted coiling. In the 2000s, Pipeline and flow diverters were perfected. I believe that the NeuroSurgery pioneer Dr. Robert Spetlzer is a graduate of Northwestern University. Sharing your condition with others is a private decision. But, understanding the advances in treating aneurysm may take the enigma of this condition.
After you get your recommendation, I would ask questions like track record especially if they are recommending a newer procedure/technology, recommended recovery time, medication. I also would not be too hard on yourself. This procedure is major brain surgery to resolved a life threatening condition. Even with efforts of the best surgeon, neurological issues (memory, balance, emotional, migraines) may follow. So, requesting physician’s surgery notes is really useful.
Lastly, after receiving your treatment recommendation, it boils down to whether your Neurosurgeon is projecting confidence. In my case, even after suffering a major seizure from the initial rupture, I still remember the confidence that my NeuroSurgeon gave me that he would save my life. I signed my own consent form
You sound exactly like me in the beginning. I just wanted all of the facts and a game plan before I told people outside my immediate family. I’m fortunate in that we knew within a couple days what procedure we would do and when. I have three children and that was indeed the scariest part. As far as your wife is concerned, I bet she is really scared and needs a friend to talk to. I think I would give her that because this will be very difficult for her. Also, while your surgery is usually just an overnight stay in ICU you will be exhausted, a little scared and probably emotionally afterwards. Please plan to give yourself some time to rest afterwards. It took me a while to feel normal again. Share your feelings and concerns with your wife and let her have a friend to lean on. This is real no matter who knows. I don’t know where you stand on religion but I wanted more people to know so I would have more prayers!! If your wife would like to email me I will be happy to talk about my journey. I feel so blessed to be this healthy and I want to help others. I remember thinking I would die and I want to help others not feel that way. You are young and you will get through this but it is a process, a very serious one. You owe yourself rest and love from family and friends.
Thanks for the offer of being a sounding board for my wife. I’ve taken your
advice to heart, and we’ve talked about it some more and there’s someone
that we both think is a good person to share this news with. I have a
six-year-old daughter whom we haven’t yet told. I don’t know how to do that
and so am going to ask for advice from someone at the hospital. I know once
we tell her she will tell others, so depending on what we end up saying it
might take the decision out of my hands from that point on!!
Thanks for the thoughtful reply. I really appreciate you sharing your
experience and some of the history of treatments. My wife and I are using
your reply to help us prepare for our meeting on Monday with the Doctor. We
have a lot of confidence in him already and now knowing more of the right
questions to ask can only help us make a truly informed decision. Thanks so
much for leading the way!
Sorry for not replying sooner (we took a trip to the country for a few days directly after the appointment).
I saw the imaging and it shows my aneurysm is right at the point where the left eye artery branches from the carotid. All the doctors that reviewed my problem agreed that this should be treated endovascularly as the location would cause problems under traditional surgery (bone drilling to get full access to clip effectively). The recommendation for the endovascular procedure is to first do a balloon occlusion test to check for flow to my left eye from other arteries. If there is adequate flow from elsewhere then they plan to block off both the aneurysm and the left eye artery with coils and place a flow diverter in the carotid artery to hold the coils in place. If the balloon occlusion test shows no other flow from other arteries to my left eye then they will only place coils in my aneurysm and the flow diverter will help reduce flow into the left eye artery. The location of my aneurysm is clearly complicating the procedure. I’ll be in surgery for four hours in total (end to end not operating time) and then ICU overnight. Catheters in both sides sounds painful as it’s taken two weeks to really recover from the angiogram! I asked about risks and heard the expected ones that everyone hears. I wanted the full details of everything that might happen so I can mentally and emotionally prepare regardless of the probability.
Surgery on 19th July. I start Plavix and aspirin on 5th July… I need to do the research on that to be prepared and take care to do everything right.
I had one night over the past few days when I couldn’t sleep as I was thinking about what life would be like in the event of complications from surgery. I think the right thing to do is try to relax and mentally prepare but it’s hard not to go down the dark path of thinking about what might go wrong.
The biggest thing I am struggling with is how to tell our 6 year old. I’m not even sure where to get advice on that… Any recommendations?
Thanks to you all for being here.
Best of luck to you. It looks like you have a great team behind you. It is great having a Surgeon who projects confidence.
For your child, I would ask your Surgeon. I am sure that there are other patients with the same predicament. When I was a child, my Late Father who was a physician would sit us down and explain that family member is in the hospital to get better in the simplest explanation. I think that the most important thing is the recuperation after surgery. You need to take time to recover.
I also want to share a great experience for survivors of Aneurysm at the Aneurysm Awareness walk that takes places every year at Crissy Fields in San Francisco where we walk underneath the Golden Gate Bridge. Many survivors out of State participate in the walk. Many of the top surgeons and neurologists from UCSF participate with many educational displays. There are many kids of survivors and lost ones who participate. It is a great experience to celebrate life and enjoy the camaraderie of fellow survivors.
Prepare for the worst, hope for the best. That is the best you can do.
Please let us all know how everything went when you are able.
Surgery done and now back home after the typical overnight stay in ICU. I can’t believe I feel as good as I do, although I am tired, sore groin (both sides punctured for me), and seem to have a grey/brown spot in the vision in one eye (only a small spot though and probably an acceptable trade off if it remains). Time to rest rest rest.
I have shared with family and some friends. I wish I had kept my circle smaller. I’m tired of hearing how life threatening this…like the doctor has told me already.
I have 4. One had bled so they did the coiling and pipeline on it first. Scheduling the cranialgram early next month to see which procedure they will do on other 3
Great news Jim.Glad you’re home and resting. Give yourself time to heal. In my case , a lot of my post surgery symptoms got better with time and rehabilitation. I’m about 85% back to normal after two years of having my PED placed. What deficits remain, I have stated before that I can learn to live with. Like you said, it’s an acceptable trade off. But in your case, you are just so, so very early in recovery. Best of luck to you and continue to keep us all posted.
Jim5, so glad to hear that everything went well. I think my annie is similar to where your annie is. I have a 6.1 mm berry annie on right ICA and ophthalmic art branch. I just waiting for a neurosurg consult.