I am 29 years old. I suffered a brain aneurysm on 9-6-12, only a few hours after returning from Burning Man. The doctor does not know why, but the bleed dammed itself -- which is why I even made it to the hospital. I don't know how big the aneurysm was (I'll ask when I see my neurologist tomorrow), but my family was told it was the kind people normally just drop dead from. At the hospital they went through my leg to put coils in my head to stop the bleed. I'm told that I am setting the curve for recovery from an aneurysm. This is partially due to my age and partially due to my fitness level. While I was there, they discovered I have an aortic coarctation. I have been on high blood pressure meds for over a year, but had never been diagnosed with a coarctation. This is why I had the aneurysm. I will be undergoing surgery around December to repair the coarctation. That seems so far away. I wish I could have the surgery tomorrow. I feel like I cannot be completely at ease until the surgery is done.
I know I'm lucky, but when I realized how lucky I was I started getting depressed. I find myself crying a lot. I don't know anyone who has had an aneurysm. I'm hoping to feel some relief once I meet others who have been through the same terrible experience I'm going through. I'm especially hoping to connect with other people my age (docs kept saying, "You're too young to be here!"). So far I know no one at all. Its getting extremely hard hearing people say, "Oh my Uncle So-and-So had a brain aneurysm too...except he died." I realize people are trying to connect with me, but they are doing more damage than good. I've only had one person tell me about someone they know who lived. I couldn't stop thanking her for the breath of fresh air.
If this had happened at Burning Man, I would have died. If I had even made it to a medical station, they would have needed to realize it was something serious, then I would have needed to be airlifted to the closest hospital. Thank goodness it waited until I got home and was in the company of someone who recognized the signs of something being seriously wrong and called 911. Next year I plan on returning to Burning Man to burn one of my hospital gowns in the temple burn. In case you are not familiar with this -- people take things to the temple that they need to let go of. It is an extremely emotionally charged place. The temple is burned on the final night. It is a very somber/spiritual event. It is very different from the burning of the man, which is a huge party. When I see the temple go up in flames, I know I can put this horrible experience behind me. That is a whole year away though. I'm finding that I need an outlet sooner. I asked my doctor to refer me to someone to talk to. I have an appointment to see her next week.
hi, i know its difficult. alot of emotions, i am a survivor of a ruptured aneurysm and they dont know how i lived either. the crying is part of recovery we all do it but if you feel like you need more assistance go to the dr. i was airlifted and made it :) happy you reached out for help.
Thanks be to God that you have had such a good recovery!
Take care of yourself. Try not to feel depressed. Rejoice and give thanks for the miracle of healing that you have been given.
There are lots of survivors among the membership of BA. Like all life experiences, our annie experiences and recoveries vary widely. Outcomes are generally better the younger you are, or so they say. My annie ruptured when I was 19 and, like you, I had a miraculous outcome. That was 43 years ago.
Until I joined BAF earlier this year, I knew very few people who had had aneurysm surgery but, thankfully for me, many of them were survivors with good recoveries. I am thankful for the friendship of the people of BAF and I welcome you to the group.
I've heard of Burning Man, but have never been. I think I feel the same way about being able to write about a situation as you do the temple burn. I'm so glad you've found a place to hang your cyber hat here at BAF. Welcome and the crying is normal and post tramaticy. It will ebb once you can process everything that's happened to you. Read through this thread when you get a chance: http://www.bafsupport.org/forum/topics/how-has-a-brain-aneurysm
Hang in there, and feel free to jump into the conversations-- Welcome!
hi Sarah! hope you find someone your age to talk too,maybe a support group? Glad your here with us- feel free to vent here while you wait for your appoitment-was good to see you sharing &venting a little! i unfortunately am too old!!lol Also many on here probably have children your age-maybe talking with them would be beneficial-they could join here as caregiver.i hope you like the lady next week-maybe write down key points to take with you if your like me with a bad memory & my mind goes blank with white coat syndrome.May God bless you & yours!
Hi Sarah, Glad you found us. There are so many survivors here of all ages. I for one understand your struggle in finding someone, who can relate to you. Right before my clipping surgery, I had my teeth cleaned. The dental technician leaned over the chair and told me about her Father-In-law. She said he was out mowing the lawn, came in for a glass of water, and while sitting at the kitchen table he dropped dead. I was so astounded at what she said to me. How callous people can be, in trying to relate to you.
I am older than you, but had my first major surgery at the age of 23. So understand how hard it is to find people of your age, that will understand. There are many on this site, so I am sure that someone closer to your age willl reach out to you.
Take Care
Mary
I couldn't say it any better then the rest of the members here, but I know what you're going thru. Sometimes you have to ignore a lot of what others say to you in life, they don't know what you're going thru mentally or physically. I'm sure they're just trying to be nice but probably don't know what to say. All I heard before and after my surgery from my coworkers was, "don't worry, you'll be fine". It used to bother me but now I just chalk it up to them not knowing what to say.
You seem like a very vibrant person, things will get better. best wishes to you!
Sarah, I know too well what you are going through. I'm so sorry you have had to go through this, like so many of us on this website. I thank God for giving me more time on this earth. This whole experience has been so scary. I have tried to find a support group here in WI and cannot find one. It's very frustrating. People try to make you feel better with stories, but the stories are always negative. I keep looking up stories on the internet but they are horrible stories also. You can't win. But what I have learned through this (and by the way, I'm 33) is that we have to be the positive stories people want to read about. I would love to help people go through this because the most frustrating part about all this is everyones story is different. There is no right or wrong way to feel. God Bless you through all of this and I can't wait to read your positive story!!!
Alot of younger people have brain annies, you just haven't heard about it yet. Even children have them.
Be strong, it's just a hurdle you will haveto over come. Alot of things can happen in our lives that were not expected by us. Thank God you survived, it's not your time yet. See a councellor or therapist because i believe you're still in shock with what happened, they will help you through.
Last night I found out that a girl I know (although clearly not very well) has suffered 3 brain aneurysms. It wasn't until the third one that they discovered the root of the problem is her heart (until now I was only aware of her heart issue). This amazingly strong girl is younger than me. She is supposed to call me today. I'm really looking forward to her call. I know everyone's experiences vary, but I have tons of questions for her about what to expect in the coming months. I'm really happy to have found someone.
Can anyone recommend a good neurologist in the Los Angeles area? I have decided that I really don't care for my neurologist that I was randomly assigned when I was transferred to Glendale Adventist (I was forced to transfer hospitals due to insurance purposes). I only saw him once or twice while I was in the hospital. I always saw his assistant. That's fine. I know he is busy. However on Thursday I went into his office for my two week followup. For the entire two minutes I saw him, he acted as though he was late for lunch and that I was a huge inconvenience. I tried asking the exact size of my aneurysm (as of right now all I know is "its the kind people normally just drop dead from" and that it unexplainably dammed itself and that is why I made it to the hospital). He didn't know because I was a transfer. This didn't seem right because I know he was given my entire file. I asked about meds. He looked at me funny and said, "We don't have you on any meds." His assistant had to correct him...but even then, their file only showed one of the meds they have me on. While I was showing his assistant my various bottles of meds, he made his sneaky escape from the room. I tried calling later to get the rest of my questions answered. The receptionist was extremely rude to me and insisted he did not do phone consultations. I explained to her that I had just had an appointment and couldn't keep him in the room long enough to answer my questions. She acted as though it was my fault. She told me that she would tell him I called, but she couldn't guarantee he would call me back since he normally does not do phone calls. She suggested I make a new appointment. I told her I wasn't going to give them more money for him to answer my questions he should have answered during my appointment today. An hour later I called back to find out if he was going to call me or not. The receptionist was extremely rude to me again. She told me she would ask him at the end of his shift if he would be willing to call me or not. She would not ask him sooner because he was with patients. I asked if she could ask him in between patients. I told her I was willing to wait for his call...as long as I know it is coming. If he was not willing to call me, I had someone willing to drive me back to his office to demand answers. She insisted that she would not tell him I called until the end of his shift. She did not know if he would be willing to call me or not. He normally does not do phone calls. This ended up with me screaming at her (I am soooo not my normal self right now) and her hanging up on me. I was willing to wait for him to call. I just wanted to know if he would call or not. Other than me screaming at the end, I feel this was a reasonable question.
I finally did get him on the phone. The phone call was as rushed as my office visit, but I was able to get my questions (mostly) answered. One thing I asked him is if I could drink alcohol with dinner when I'm out with friends. I had asked his assistant when I was being released from the hospital. His assistant wasn't sure and suggested I stay away from alcohol until my two week follow up and ask the doctor at that time. What did the doctor say when I asked? To go ask my primary care doctor instead. Why would I ask my primary care doctor? As my neurologist, he should be answering that question. In theory, he is the one who prescribed all the meds I'm currently taking (other than my blood pressure med). I was really put off by this.
I also found it odd that he did not order any tests and does not want to see me back for a full year. I don't know if this is normal or not. Considering how big I'm told my aneurysm was, I would assume there would be more follow-up to make sure I'm ok. How often did you guys have to follow up with a neurologist after your rupture?
Whether he is in the right or the wrong, I do not want to see this man again. I love all my doctors because they take the time to talk to me and make me feel comfortable. My future heart surgeon talked with me on the phone for 20 minutes the other day after he had to postpone our appointment. I was extremely impressed because I would never have expected that of him. He answered all my burning questions and let me be the one to end the phone call. I don't expect that kind of extra special treatment from every doctor, but I at least expect my questions to be answered during my office visit. So if anyone has a recommendation of a Los Angeles based neurologist, I would really appreciate it. I need to find a neurologist I feel comfortable with. I don't feel comfortable with him.
hi sarah!-how are you? i don't think many people will see this - i was directed here thru e mail since i was one who replied originally- try posing question on a blog or forum maybe so all can see- take care. i hope you get some answers, forum is a little tricky because the default setting is "latest activity" so when i add this it will go to the top of the pile but will soon be "buried"- hope that makes sense!may God bless you & yours!
