I've just been diagnosed with a 7mm aneurysm at the junction of the left carotid artery and opthalmic nerve. Initially it was to be the monitor, wait and see approach, however since having CT angiogram last week my surgeon says I need fairly urgent surgery and has booked me in for clipping on 13th December. He says this is because my aneurysm is elongated in shape and has an irregular border, which are apparently more accurate indicators of increased risk of rupture. I am so anxious about having such major surgery when essentially I am asymptomatic and feel there is nothing really wrong with me, but at the same time I am also paranoid with everything I do in case it ruptures. There are just so many risks associated with the surgery, and although I have been reading about all the positive outcomes in this forum, I can't help but focus on the 1 in 20 risk there is of me dying or being severely brain damaged (as told to me by my surgeon), and of course there are only positive stories here-the ones who have died/have serious brain damage aren't able to continue writing. Any help or advice would be greatly appreciated.
Ron is so right. You have to have confidence in your surgeon. I had a 6mm off my opthalmic artery behind my right eye. I had clipping done 10 yrs. ago and I am glad I did. Mine was not at the stage of rupture but after surgery my sugeon told me it would have eventually ruptured and I would not be writing to you today on this wonderful THANKSgiving morning. Most neurosurgeons are so gifted. As we have said on this site before, to them it is like a dentist doing a root canal or pulling teeth. They have done hundreds, some thousands of clipping surgeries. I think the good out weighs the bad in having surgery or not. Why take the risk of a rupture when you could more likely have brain damage. Yes there are risk of surgery, but right now it is what it is have you have to do what you have to do to fix the annie. At least it can be fixed. None of us wanted to have an aneurysm but something is gonna get you if you live long enough. Try to be informed as much as you can and know that there are many here who have come out just fine. Ask for something to calm your nerves before surgery. I had to go on xanyx before surgery, because I am such a control freak, and when you are told you have an aneurysm you learn real quick, you have no control only God does. LIfe is so much better when we truly let HIM take control. Hang in there and know we are here for support when you recover. As you have read, surgery is not the hard part, recovery is. Having said that, it is hard, but so doable if you take it slow and steady. What seems like an eternity will really be only a vapor of time in your life. Just a bump in the road of lifes journey.
Did he give you options? Or is the clipping the only option due to the irregular shape and/or mouth? There are many treatment options available now... clipping, coiling, coiling with stent, PED, liquid embolics (glue). Only clipping involves what is considered majorly invasive surgery, the others are done through femoral artery and have a much quicker turn around time as far as recovery. Did he mention any of these to you, or explain why it has to be clipping?
I was given three options as glue wasn't perfected yet -- clipping, coiling or PED for a 7mm sacular shaped aneurysm on the branch of my right carotid artery and ophthalmic artery, and went with the PED. But mine was a different shape than yours (is yours fusiform?), so there just might not be any wiggle room.
There are a few people on here from Australia that might be able to give you surgeon names for a 2nd opinion -- if you don't feel comfortable with your surgeon, or you feel that there might be wiggle room for other options, or you talk to your surgeon and he says there are no other options, I'd go after a 2nd opinion just for ease of mind. Most hospitals will get you a copy of your angio on CD for you to take with you to another doc, and at least here in the states, most insurance companies will pay for a 2nd opinion.
Will keep you in my thoughts and prayers--
The options for my aneurysm were clipping, coiling or nothing (monitoring with repeat MRI's every few months or so). Because of my age (42), the surgeon said that clipping is best as it is much more stable long term than coiling. He also said that if anything goes wrong in surgery at least they will have good access to be able to fix it before it causes too much brain damage, whereas with coiling this is not the case.
I do have confidence in my surgeon if I decide to go through with it, I am just having a lot of trouble making that decision. For all I know, my aneurysm may never rupture and I may not even need surgery. To anyone out there in a similar situation, what was it that made you go ahead with surgery on your unruptured aneurysm, rather than wait and see?
PS Robyn, I'm glad you were told yours would eventually rupture, that would certainly make my choice easier if I knew that but my doctors say they can't tell if it will ever rupture or not. It sounds as if I am a bit like you in the control freak status and I think this is what is bothering me so much. I feel like I should have the surgery to alleviate the massive stress and anxiety that goes along with having no control over this, but are psychological reasons an appropriate way to do decide to go ahead and have such major surgery?
The only way they could tell it would rupture was during surgery. Mine, like I said was 6mm with a wide neck. The first clip didn't work and they had to use another one. I was 42 when I had my surgery. I like you had to make the decision of clipping or coiling. Coiling was very new when I had my surgery so I went with clipping since it has been around for quite a while. I could not stand the thought of having the annie and it not be fixed. If that does not bother you then, maybe you should just let them monitor it for a while. Keep us updated.
Thanks Robyn, that helps a lot. I am basically an anxious, stressed out paranoid wreck at the moment, so no, I don't really think I can live like that, but it still seems to be such a big decision to make solely based on the state of my mental health! I do think though that if I have it done I will go for clipping rather than having coiling and still being worried about if it has worked and if it will last. Thanks again for your advice and support.
Kitty kitty it is a tough decision to make, especially if you are not having problems. I encourage you to make a decision about the fix while you have the option. This past Feb I was out to eat with my fiancé. All of the sudden I grabbed my head. He asked me if I was ok. I told him I didn’t think so & I passed out on the floor. We were fortunate. In the restaurant was an ambulance driver and a policeman. They took over & got me to the hospital. I was stabilized in Ft. Worth &flown to UTSouthwestern hospital. It was discovered I had a ruptured aneurysm on the vein that feeds blood to your brain. I also had another one that was not ruptured. Both were fixed with the coiling procedure. I just had my 9 month follow up MRA and there has been no change. Long story. (Sorry I’m from Texas we have to draw everything out!) we will all be here to give you support and prayers.
Thanks Myra, I am very grateful that I found out about it before it ruptured, unlike yourself. Obviously it would be better to have surgery rather that wait and deal with a ruptured aneurysm, but it's such a hard decision you have to make by yourself when the surgeon can't really even tell you with all their knowledge and experience-I mean what the hell do I know!! I suppose it comes down to the fact that I do now know about it and cannot pretend I don't, and the thought of living with the knowledge that it may (or may not) rupture at any moment would probably simply cause me too much anxiety and paranoia to have much quality of life anyway if I do not attend to it now. Those of us who have a rupture sort of have that choice made for them, for the rest of us I guess it's just blind faith and being able to be at peace with ourselves in whatever decision we make. Thanks for your support, I wish you all the best and hope that the worst is now behind you.
Keep in mind that there is no return from a catastrophic rupture. Clipping is permanent and much safer now. Hope this helps you.
Thanks Ed, I know you're right, it's just such a scary, lonely place to be in. I'm feeling quite child-like and wanting someone else to make the decision for me and tell me what do. I've got a few more referrals for second opinions if they can fit me in before my booked surgery on 13th Dec, so I hope that helps. I think I just need someone else professional to say yes you're doing the best thing. Thanks for your advice asit does help me put things more into perspective.
"To anyone out there in a similar situation, what was it that made you go ahead with surgery on your unruptured aneurysm, rather than wait and see?"
I wanted to watch my son grow up, pretty plain and simple. I also didn't want to have to worry about my head exploding all the time with every little pain that I was having. I also simply wanted the stress gone. I didn't want to leave anything to chance.
Hope this helps-- you're in my thoughts and prayers--
I felt like you did as far as walking around with an unclipped aneurysm. I made the decision to go for it. Whatever 'repair' you decide just make sure you research the before and afters. I did no research pre-op because I didn't want to put more fear into myself. I made the decision and stuck with it. Right or wrong it worked for me but its not for everyone. I found this group post-op and was very grateful because it gave me so many answers to problems that doctors could not give me. Best wishes and stay strong.
Thanks Tara, that helps a lot. It’s pretty much along the lines I was thinking too, except I don’t have children to worry about providing for and seeing grow up. Do you think your decision would be different if you didn’t have kids? Also, how did everything go with your surgery, recovery, etc?
Thanks Jeanne, I actually wish I had done what you did and not done any research. It's like the more knowledge you have, the more anxious you get and it's harder to make the decision. But it's too late now, I can't go back. I am grateful that my anni hasn't ruptured yet, and the more I hear from everyone on this site, the more comfortable I am starting to feel with the decision to go ahead with surgery to clip as planned for the 13th December.
A big thank-you to all of you that have taken the time to share with me your stories and provided your advice and support. It has made such a huge difference to me and I no longer feel so alone in this journey. I am grateful for each and every one of you xx
Thanks for your post, it has helped put things into perspective. Yes I do trust my surgeon and he has also been so patient and supportive with me as well. I have gone back to see him a couple of times now over the past 2 weeks just to discuss my concerns, and he has been very open, honest and understanding, so that helps too. I asked him what he would do if he was in the exact same situation as me, and he said he would definitely go ahead with the surgery. I think what I really need now is another surgeon to agree with this opinion as I believe that would help put my mind at ease. I have faxed off a few referrals on Friday, so I hope to hear back from them tomorrow and if I'm lucky I will get an appointment asap as I now only have 2.5 weeks before my booked surgery. If that happened I'm sure I would be much more confident to go ahead with the surgery and be able to relax a bit and have some peace for the next couple of weeks prior to surgery. That would be so nice! Thanks so much for the prayers, please keep them coming my way!!
Hi Kitty,I had to have 2 aneurysms clipped last year.The first one was larger and when they went in it was bleeding,my surgeon came to talk to me when I was awake 24hrs later to tell me and originally they were going to leave the smaller one for about 12 months but because of the bleed wanted to clip the other one ASAP.I waited 7 weeks for the second one.I know it is a huge decision but at the end of the day I feel it is huger not having the surgery.I also was very scared at the risk factor they tell us about but I think to live with an unruptered aneurysm would be worse .I feel that I missed 6 months of my life with recovery and memory issues but now am driving and living a normal life again,yes yearly MRI's but every day I have is maybe a day I could have missed.Please think positive and listen to your Doctor I agree very scarey either way .Take Care .
L & Kitty,
Exactly is how I looked it in making my operation decision. Pre diagnosis of the aneurysm both the optometrist and retina specialist could not find out what my vision problem was and suggested the MRI. Neurologist did the MRI and that is how they found the aneurysm which had nothing to do with my vision problem. I felt it was meant to be found so that made my decision even more confirmed to have it fixed. The strangest thing though was just before I physically went to the optometrist (1 week) my vision problem went away. I had it for almost 1 year and it took me that long to get myself to the optometrist. Outcome could have been quite different had I cancelled that Optometrist appt. I had a blurry blind spot in my vision for which I still have no answer but it is gone. Life works in strange ways sometimes.
I'm not sure if my decision would be different. I don't think I could go through life worrying if the aneurysm was going to rupture or not so I probably would have done what I did even if I didn't have my little guy. I had the PED inserted on July 31st. The aneurysm was found because I was having a lot of headache pain on the left side of my head (the aneurysm was found on the right) and migraines which I had never had until the headaches started in January last year. It was discovered during a CTA but not diagnosed until I had a TIA and wound up in the ER (the doc's office forgot to call me with results and went on summer vacation). Luckily I wound up at Hopkins because my local hospital doesn't do surgery on aneurysms, and Dr. Alexander Coon did my surgery which went very well. It took me around 2 months to recover from the surgery -- one month to heal up, and another to work up my stamina again in order to go back to teaching. I'm still tracking down the pain on my left side, but my neurologist is great, and the pain is now manageable I recently had my 3 month angiogram, and the aneurysm is 98.5% occulated and shrinking quickly. My next one is in 9 months and the surgeon said he expects it to be entirely gone at that point. Decisions are tough -- you're in my thoughts and prayers.
I was in a wreck, not hurt...EMT's insisted on taking me to ER for CT since airbag didn't deploy...found two aneurysms, after two surgeries, PED, they actually found two more small ones and fixed them all. i was asymptomatic. I felt like God put me in the position for them to be found and also to not have a "choice" about surgery. they sent me to Mayo immediately for surgery...didn't ask me. My second surgery i had a choice. i went for it because i didnt want to live with the knowledge annies were there and i want to see my kids have kids some day...just saying..everyone here seems to have good advice. and good luck, God speed!
I just had a 5mm left middle cerebral annie clippped last Tuesday, Nov. 20th. It was discovered last March when I was in the hospital for a mild stroke. I had no symptoms either at first. I had my angiogram August 24th where I noticed there was a daughter dome on. My surgeon at our local hospital didn't seem to be too concerned about that but I knew there was more of a concern to get it clipped as soon as possible from a book I had gotten written by a neurosurgeon and a lot of people on this website who had daughter domes as well. I know how you feel, I had a lot of concerns because I knew the surgery could possibly cause another stroke this time on my right side, I could lose my speech for awhile and other little side effects. My friend's husband knew a woman who had had her annie treated at Jefferson Hospital in Philadelphia. She gave me a call and she said her surgeon did such a wonderful job the only thing she had to do was rest for awhile. That was good enough for me and I'm so pleased to tell you I had no deficits from the surgery. I only had pain medication the second morning after the surgery and I felt I really didn't need it any longer. My only restrictions are not to lift anything heavier than 5 lbs. I'm resting a lot right now but I feel my brain works just as good as before.
I would advise you to get on every prayer list that you can because that really helps a lot. The closer I got to my surgery the more calm and peaceful I felt. God brought me to it and brought me through it! It's natural to get a negative thought here and there but try to push it out of your head. I would say "Satan I wash you with the blood of the Lamb" and the thought would leave. I hope this has helped you somewhat. At first I wasn't going to get an angiogram I just wanted to put my head in the sand. I'm so glad I didn't because my surgeon said there was actually a third daughter dome on top of the second one and it was very thin. I really think God was trying to tell me something and I finally listened. I hope this makes sense to you and is helpful. Take care,