Hi everyone
I haven’t really posted about my surgery or what was found or my journey in finding out about my aneurysms. My journey started in August of last year when I lost the sight in my right eye from there I had MRI CTs angiogram’s and then finally surgery on February 7. They were able to clip Two of my three aneurysms in the cusp in my brain honestly I can’t remember what it’s called but it’s interior one of those aneurysms had a blister on top of it which my doctor was very happy to have done the surgery when we did because of it at possibly bursting. They had to put two clips on each of the aneurysms. I go in April for another angiogram. I haven’t had a whole lot of issues since my surgery I had a very good doctor at UCLA his name was Dr.Colby in Nuro surgery he did an amazing job and I have very little side effects so far. I am off all pain medicine and have been for about a week I do take some Tylenol here in there to help at night because I can get some stabbing pains but after everything I’ve been through this is not a bad surgery and quite honestly I wasn’t sure that I would even wake up from this I’m 46 years old and I live in Southern California. I would be more than happy to answer any questions that anybody has from my whole journey I only hope and pray that whoever does have the surgery has the most amazing doctor as I did. I did my research as this was all taking place on who and what doctor I wanted to go and see and I had to fight my insurance company to be able to go and see Dr. Colby they wanted me to see a brand new doctor that just got transferred to Oxnard California St. John’s Hospital and when I seen him for my consult he had none of my paperwork with him he told me he was going to crack my head open plain as day no bedside manner . In actuality he had just gotten out of school and was going to work with doctor Zauner contract out to Oxnard and he told me I only had two aneurysms when I actually had three and I had the reports to prove it.
I have to tell you that two days after I got home From my surgery my brother-in-law called my wife and his friends wife Was in Oxnard hospital St. John’s Hospital her aneurysm had burst she was on life-support and was not doing very well. We got the news this last weekend that she had passed. I truly believe in my heart of hearts that if I would not have fought for who I wanted to do my surgery and did the research on who was good enough to do my surgery I wouldn’t be here Telling you my story. So I just beg of you to do your research on the doctors before you go see somebody that isn’t qualified and from what I understand these surgeons should be doing at least 200 surgeries a month to be good. I wish everybody the very best and I think God every day that I’m alive.
Misty, I’m very happy your procedure went well for you! It sounds like your friend’s wife ruptured. Rupturing is an entire different ball game with the risk of death being so high, the risk of death from complications, etc. Although the statistics are now all over the place (from 10% to 40%) of initial survival rate I found this at NINDS https://www.ninds.nih.gov/disorders/patient-caregiver-education/fact-sheets/cerebral-aneurysms-fact-sheet
The research does recommend going to a facility that does a lot of aneurysms. But I’m wondering about one doctor doing 200 a month. That seems a bit high given the time it takes even for a coiling. For me, my rupture repair was about 7.5 hours, the subsequent follow up coilings were around 5 hours. Is the 200 a month for the facility as a whole or is it 200 a year? Just curious…
Glad this is all behind, wishing you smooth recovery !
Hi
Yes it’s 200 a year. Mine was 10 hours long. And my Dr does his surgery’s every Friday. UCLA is a teaching hospital so I had a whole team of surgeons. I have been noticing some memory loss and can get words out of my mouth that I want to say. Along with the left side of my head still numb and my eye taking forever to open. Which I was told they my have hit a nerve. However I don’t really have any pain. I was very scared to have the craniotomy but doing the coils was to much of a risk considering where 2 of my aneurysms were. I would have had a40% chance of making it through the surgery. My Dr was very honest and amazing in telling me what risks with. What surgery and best chance of making it out alive.
Thanks so much! Math skills have become a conundrum since I ruptured which is still very aggravating I still have troubles with spoken language but it’s vastly improved. I really appreciate Doctors who make sure we know all the risks
You said you had three and two were clipped. What about the 3rd one?
Glad you fought for youfself and had great care and are feeling good.
I had the same experience with my first doctor, he had not read the entire MRI report so I thought if he can’t take 5 minutes to read it, he is definitely not good enough for me.
The 3rd one is behind my ear at my jaw line. My Dr said he could coil that one and put a stint in but he would prefer to watch it for a while. I go back in April for another angiogram. At that time we will make the decision.
Simple math is ok but I have to use a calculator. Algebra is gone. Spelling is ok but spell check is necessary. Art is wonderful. I took a test to measure my abilities. Memory is terrible. I have to write things down. Notes! I could not put together a simple red and white shapes. You look at a picture of the puzzle put together then must put together the red and white pieces to match it. I COULD NOT DO IT! It was simple and I couldn’t do it.
Btw I had a 40% chance of living.
It’s very difficult and frustrating to lose a skill we were so good at. I remember trying to tell the Drs who were trying to stabilize me that I was an organ donor, etc. he said we aren’t talking about that right now, he was very adamant! Surgery was hours long the next morning and my BH was told not to expect much. They weren’t sure I would even wake up, much less make it through “too much blood”. But Ms. Vicki, we are both here to help others with this new path!
Hi guys!
So my angiogram got rescheduled for may 21st. This will be my post surgery angiogram. I’m actually having a lot of anxiety about this. Not just because of the virus but because I’m still healing from my surgery. The last thing I want right now is more work done on my brain. I just don’t know how to deal with this. Any suggestions?
Misty, it’s good they’ve rescheduled your angiogram and I can certainly understand your angst. Are you able to go for a stroll somewhere? Mindfulness is a good tool to have as well. Or maybe a hobby? Crochet, knitting, wood carving? Do you know how to do deep breathing exercises?
I would give myself a set time to be anxious, then I would go about my day following a chore list. During the limited time I set for myself, I would go over all I could control and all I could not. For the things I couldn’t control, I would break those down and see what I could do. The set time allowed me to honor and acknowledge my feelings without dwelling on it all day.
I hope others chime in with what they’ve done. Keep in touch!
Hey Misty,
Moltroub always has great suggestions. I’ve had over 20 angiograms. 2 aneurysms clipped about 10 years apart. My 1st one was in 2001!! So much has changed since then. My last one was last year and my next one will be early spring 2021. Anyway…
The technology and information from my 1st to my last one improved by leaps and bounds!! They don’t use as much contrast, the images are sooo much better, there are now devices that help close the femoral artery in minutes not hours and only a couple of hours lying flat…not 6-8 hours…which was the norm back then!!!
I use imagery meditation from a CD that a friend gave me before my 1st clipping and it helped me so much. It’s about how to have a successful surgery and it helped me find a “safe place” that I imagine and go to. When I’m there…I’m safe. I also visualize the nurses and my vascular doctor being the best ever and know that they all have my well being at the forefront of all they do.
I searched my childhood for a place where I always felt safe and that’s where I go in my mind when I become anxious about any procedure I’m going to have. And while there I can see all of the preparation and care that my medical team has for me and my health/saftey.
I hope you can find something that helps. Even putting together puzzles on my tablet helps me.
I’ve put your date in my calendar and I’ll be thinking of you on that day.
Please let us know how it goes if you can. We’ve pretty much have all “been there” and knowing that you are OK after lifts my spirits and helps me cope too!!
Take care–Mary