This is my first post and am so grateful I found this site. My surgery is finally in sight - Oct. 8th. I had an MRI in late June and a 3mm smooth DACA aneurysm was seen. I was having memory issues and the neurologist ordered the test just to be safe. They also found 3 old strokes. I’m a 48 yr. old female with hereditary high cholesterol and a PFO hole in my heart. Otherwise, I’m healthy. Until this. Now I feel like my world is upside down. The follow up MRA confirmed the DACA but it was 4 mm by Aug 15th. I went back to my neurologist who said the aneurysm and strokes were unrelated and basically she’d see me back in a year. Wait. WHAT?? She proceeds to tell me no neurosurgeon will touch something so small. So I started researching the difference between the DACA type of aneurysm versus other types. Advocating for myself, I found a wonderful neurosurgeon from Barrows Neurological Institute in Phoenix who immediately did an angiogram. This was the last week of August. The angio. showed the aneurysm has an irregular morphology and measures 2.68 x 5.34 x 2.17 mm. The neuor. said he would do coiling if he could, but sadly after the angio, he had to refer me to the head of Barrows to schedule the craniotomy with clipping. I am absolutely terrified as I’m sure every person posting on here has been or is in the middle of. I try to keep positive knowing I have one of the best surgeons God could possibly put in my path, but I have no one to talk to who understands anything about the dangers of aneurysms or the feeling with every tiny headache thinking “is this it??”. My husband of course is scared too, so we’re both walking on eggshells around each other. I find myself constantly worrying “what if”. What if something happens that leaves me incapacitated, what if I can’t hug my children, my family. Is all of this worrying silly?
No it’s not silly , it’s normal to worry … I wish you the procedure to go well !
Thank you gk79!
There is probably not a lot anyone can say to take your worry away. Know that you are not alone. I had my aneurysm clipped 5 weeks ago. Pray! Trust that God will protect you. Your surgeon and team are going to work hard to make sure it’s a success. This is first world medicine. They cleared you for surgery, so they think you will survive. Personally, I asked to be put to sleep ASAP, which they did within 5 minutes of bringing me to OR. The next thing there were several woman around me trying to wake me. One demanding that I answer her questions. I couldn’t yet open my eyes but I knew it was over and that I survived.
It is not silly at all! I have one clipped after rupture and one we are watching. I survived a rupture and craniotomy already, but that doesn’t make it any easier to deal with having an unruptured one still there. I think, for me, the family was the hardest thing to deal with. I worry so much about leaving my family behind, what my kids would do if I wasn’t here to take care of them. I try to take every moment I am given and enjoy it. Best wishes for your surgery and recovery! It’s not an easy place to be in, but you’re on the right path.
Thank you Kgrip0828. I do have to remind myself that I am not the only one lost in the unknown right now, so is my family. Thank you for your words of encouragement. What was the recovery for you like?
mumma1970, I think that having ruptured before knowing anything may have been a bit easier for me after being on this site for a few years. What I did before my 3rd coiling was to get my house in order, both physically and spiritually. It helps with wanting some control and being proactive for yourself and family. So we made sure our wills were up to date, the house cleaned, yard work done, someone to take care of me for a few days, easy foods to heat. Everything to make it easier on us for a couple weeks or so if that makes sense. Dr. Wolfe didn’t know if she would have to do a craniotomy or if coiling would work. She used a balloon assist and so far so good. There’s an old saying that I like to live by, Prepare for the worse, expect the best. Make sure you ask the Neurosurgeon to hook you up with a dietician/ nutritionists as there are guidelines for protein intake and hydration that you absolutely must follow. Good luck and I’ll keep you in my thoughts!
These are great ideas. Both my husband and myself work for City gov’t and our FMLA was granted for both my husband and myself and my neurosurgeon ordered for my husband to have 4 weeks home with me. That is such a blessing and I realize a lot of people aren’t so fortunate with time/jobs/help. We’ve been proactive that just in case the time runs out, HR has been a big help with long-term disability, but I’m hopeful it doesn’t come to that. Gosh I can’t believe you’ve had 3 coils! I don’t know if my nerves could handle going through this again but I read all of the stories here and you’re all so incredibly brave and resilient. Trust me, this forum has been the biggest source of comfort!
That part - going into the OR is when I start truly panicking. I’m hopeful the anesthesiologist will help me along before they begin moving me. My whole family is going to be there which I’m so grateful for but I think will add to the emotional aspect. Were you in a lot of pain after?
I was actually in no pain. My head and half my face was swollen and numb. I was uncomfortable. Thirsty like crazy and hungry. IVs, an A Line, monitors, etc. They wouldn’t let me eat or drink for another four hours. When food came I couldn’t chew. This is quite common, something to do with the nerve of the jaw. They ordered me pureed food. That only lasted about 2-3 days.
Recovery was/is ongoing. I still deal with headaches daily and exhaustion a lot of days. I feel great compared to when it started and I am back to work and recently started school. I run with the kids to all of their activities and, to someone not fighting this battle, am back to “normal”. I don’t feel like the same person but I feel a lot like my old self. I know that slowing down would definitely help with my headaches and exhaustion, but now more than ever, I know that life is short and I don’t want to miss anything. I still have to do angiograms for the growing aneurysm still there and I see a neurologist regularly as we try to help with headaches. I am here and I am living and I am appreciating every day as much as I can. I still have hope that there is more recovery in my future. It has just been a year and from what I hear healing happens for years after a rupture/surgery.
I wish you all the best, especially with the aneurysm that is still there. I’m so very sorry you’re still dealing with this. I cannot even imagine. I’m going to make sure I get the nutritional information prior to going home regarding protein, etc. I will checking in as often as possible for recovery tips
My first annie ruptured in April 2018 and during the work-up a second, larger one was found. So the first one was clipped via craniotomy as an emergency procedure and after 8 days in neuro critical care and 2 days on a regular floor I was sent home to recover and await my second surgery for the unruptured annie 3 and 1/2 weeks later. I, too, worried a lot that I might not survive but I worried more that I might be incapacitated and become a burden to my husband. I just had to accept that this was completely out of my control and have faith in my surgeon and her team. Your fears are not silly. They are normal but you can’t let them overtake you. These surgeons really know what they’re doing and will take care of you. I told myself before each procedure as I was lying on the gurney that all I had to do was sleep for the next 6 hours and let everyone do their jobs. What will be will be. One of the most comforting things anyone has ever said to me was said by the anesthesiologist for my second procedure who told me as I laid on the table “I am here to keep you safe”. It meant the world to me and I knew everything would be OK. It also made me realize that every member of my team had just one goal in mind which was to take care of me. I am one of the truly lucky ones as I survived completely intact and am so grateful every day for my life. I wish you all the best and I wish you peace as you await your big day.
I worked for the county…paid 15 years into long term disability and was denied because I could drive one mile to my parents and the less than a mile to PT. I could not drive in the largest city in our county, I could not drive to my pcp because he was in that city. We live in a semi rural county. When LTD calls, remember you can’t do anything. They will find a way to not pay was what I was told. I didn’t prevaricate and I didn’t understand the young man who kept trying to get me to say I couldn’t drive. Luckily I had accumulated significant hours of vacation, sick days and comp time. Unfortunately, I was forced into retirement and the long battle for disability started.
I will be think of you and praying for you. I can only imagine how scared you are and I hope you find some level of peace through whatever beliefs you have.
Thank you! Good luck to you with all that you are going through. I know you will find some comfort in the wonderful people on this site. Whenever I am questioning something, I know just where to go!
Thinking of you and praying you did well with your surgery
When you’re feeling up to it , please let us know how you’re fairing.