Hi, my 23-year-old daughter Kasey just found out the aneurysm she has growing behind her eye in the carotid artery has more than doubled in size in a year, so Dr. Sekhar at UW wants to do a repair in the next few months. We have a huge history of bursting brain aneurysms on my husband's side of the family: his mother, brother and niece.
He said there are two options he is considering: the new Pipeline Stent and traditional clipping. Last year he was really pushing the clipping, but this year he is pushing the stent. But he told us that of the 30 pipeline stents the hospital has done so far, there have been a couple hemmorhages, a couple strokes, and a few people lost their vision. Hers is right by the optic nerve. Kasey is leaning toward the brain surgery, but the risks seem very frightening with that, too.
I am looking for advice and guidance. I am even thinking of getting a second opinion at Johns Hopkins or a place that does a lot of aneurysm surgery. Dr. Sekhar has done over 500 surgeries himself and is well-respected, but we want to get as much information and guidance as we can.
What steps should we be taking to ensure we make the best decision?
Diana,
I had clipping done in September of an aneurysm that was at the junction of my right corotid and communicating arteries. It was pressing on my optic nerve. I did a lot of research on options and felt that clipping was the best choice for me. I hadn’t heard about the stent option but maybe it wasnt an option for where mine was located. Coiling was not an option based on the shape. I had mine done at scripps green hospital in torrey pines. Which is near la jolla california. My dr was absolutely amazing and people travel from all over the world to see him. His name is dr rene sanchez-mejia. Not sure if he can give an opinion over the phone.
My surgery went well. My aneurysm was in worse shape than the images were able to show. Having the surgery quickly saved my life.
Hope this helps
Carol
A 2nd opinion might do best for you. I had mine Pipelined at Hopkins on July 31st, but mine was at the branch of the ophthalmic and carotid arteries. It's now virtually gone with only wisps of blood entering on the last angio in early November. My surgeon was Dr. Alexander Coonwho was wonderful and great at explaining everything. I was able to choose between three options, clipping, PED (Pipeline) and coiling. Dr. Coon is well versed in preforming all three surgeries. I went with Pipeline due to quicker recovery time, less complications, and wanting it completely gone without needing to be recoiled. It was very cool to see the images in December and see no aneurysm there at all. I was around number 97 for Coon's team back in July on the Pipeline, and at that point, only two had issue from what I understood. I'm certain he's done a hell of a lot more since then, and I know two of us on this forum have had great success rate with the PED and Dr. Coon's surgical expertise. His number is 410-955-2438 if you're seriously considering a 2nd opinion. Tell him Tara sent you. ;)
Hi Diana...one other thing I thought of esp after reading this post...a 2nd opinion is a good thing...and to remember that the final decision should be made by Kasey...she is the one who will live in this journey...and it is important for her to feel comfortable with her Surgeons and what they are telling her...~ again, God Bless...have you in my Thoughts ~ Colleen
My aneurysm is on my left carotid artery and resting on my left optic nerve, I had 2 PED’s placed in may 2012 and think that wa the correct decision. My neurosurgeon told me that without the PED he would not have touched it because of its location. I have no problems and was only in hospital for a few days, it i the least invasive of any surgery. Join the PED group and read some of the stories it will help with you decision. I have a friend who had coiling a few years ago and this year after the coils had compacted she has had a PED placed and her aneurysm is now totally occluded.
Carol do you have scars from the surgery? The doctor told us there wouldn't be, that he could hide it in her hairline, but she has thin hair and we're worried it will show or won't grow back right. She's so young and beautiful. I know that probably isn't a big concern when a life is at stake but it's still something to consider. Did you have any vision loss or any other complications?
Thanks so much for responding. I really appreciate all the comments and information.
I'm so glad to hear about this, Tara-- that Hopkins has done more by now and had few complications. I'm considering flying her there because my whole family lives there and she could recover there, and because Hopkins is usually so cutting-edge. Thanks very much, and I'm glad you're doing well!
Yes, I do have a scar that runs from the top of my head down the right side to the top of my ear. The incision was done about an inch in from my hairline. So I have a little strip of hair in front of it. I have to use hairspray to keep my hair covering it. My hair is very thin, too. I will have someone take a picture of me today, so you can see. I do have a strip about 1/2" - 3/4" that hair does not grow.
My vision is quite blurry. I was told to wait until January to see an opthalmologist (swelling should be better). I may need to wear glasses, but am very thankful to God for what He has done. Please read my blog post "Do You Believe in Miracles?" It tell the story of what lead to my surgery. God is absolutely amazing!
I am 21 and have an aneurysm behind my eye. I will be choosing the clipping. Even though there are possible things that can go wrong such as going blind, hemorrhage, and so on she is very young. I believe from me perspective and my doctors perspective you guys should should the clipping for a better long term choice. My doctor wants me to do the clipping because I am so young and it is almost basically a long term fix. Yes it is MORE invasive and there is a l4-6 week down time but if you look at it in LONG terms as my doctor put it, it’s is maybe a better decision considering she is 23 years old. that is my perspective as a 21 year old ( yes I know I am only 21 but I can give great advice considering I’m going through the SAME situation your going through) and my doctor and I discussed this a lot. I have an amazing neurosurgeon in st.louis Missouri if that helps back up the advice I am giving you. God bless! Good luck! Your in my prayers!
Good luck Ellen! Please let me know how you do. When is your surgery? Have the doctors said anything about scarring? Ours said the scar would be hidden in her hairline, but she has fine, thin hair so we're worried about that. Do you mind me asking who your surgeon is? Did you get any second opinions? We are still trying to decide between the pipeline stent and the clipping. Thanks, we are praying for you too!
I had a pipeline placed by dr Demetrius lopes at rush in Chicago and I would say it was one if the best experiences in my life. It was almost a pleasure to have brain surgery! I had 2 in the internal right carotid artery. One above the optic artery and one below. He is one if the top surgeons and was in the FDA study so has been doing for years. Very very good experience.
My surgery is planned to be done in may. But my doctor wants to do it ASAP. My parents aren’t as on board as you guys are they are still kind of still in denial of the whole situation. So it’s a rough situation for me. The scaring will be in my hairline my plan is to get the best plastic surgeon to repair me after surgery. If her hair is thin it will still grow back but you always can get like extensions to put in to make your hair look fuller. I know it’s not ideal. I would rather have the more permanent surgery done and have a scar than have to worry. My doctors name is Thomas Forget he works for mercy medical st.louis. My first real opinion was when I was in the hospital. I will be getting a third most likely by a doctor at Barnes. It does scare me because it is my brain so I want the BEST surgeon treating me. I would go out of state but my insurance does not go out of state. And the doctors I have talked to have advices me to do the clipping over the coiling/ stent. Thank you for praying for me it is greatly appreciated.
My Neurosurgeon told me the same thing and I am 48. He said that having the aneurysm clipped is a 100% fix, but coiling would most likely need to be redone in a few years. My aneurysm was not a candidate for coiling because the neck was too wide. But, prior to knowing that coiling wouldn't work, my husband and I decided on having it clipped because we wanted a permanent fix. I posted a blog called "Do You Believe in Miracles?" it details out the last year and what lead up to the surgery. I am very glad that we moved quickly. I pray that your family gets on board quickly, especially if your Dr wants to do it right away.
That's a good tip Teresa, I had thought of finding someone who was in the study and had done a lot. I will check him out. I'm glad you are doing so well!
My wife suffered an aneurysm leak in july and is currently in th middle of what I see as a 100 % recovery. We were fortunate enough to live just 8 miles from the national brian aneurysm center, St Josephs hospital in St Paul, MN. We had Dr Nussbaum as her surgeon. He is top 3-5 in the country! The facility and staff are fantastic. I couldn't imagine having gone any where else with the way things worked. They have other options called coiling. I'm not going to try and explain. I'll let you do the research. This type of procedure is less invasive and can be performed without surgery depending on the aneurysm. Hopefully this gives you some help. Good luck to you and your daughter, stay strond and positive. :)
Brad, I'm so glad your wife is doing so well. The doctor didn't didn't mention coiling because he feels the Pipeline Stent is better. Did your wife have that or the clipping? I was wondering-- how do you find out how your surgeon is ranked in the country? I want to be able to plug in names and find out, if there is a way to do this. Thanks so much, and best of luck to you and your wife.