Hi, new member here!

General personal-stories
1

Let me introduce myself. My name is Rafael and I hail from the currently too hot for mere mortals state of Texas (it’s not that bad, we actually got a ton of rain yesterday). I am 33 years old, finished my M.S. 2 years ago and am a gainfully employed husband and father to an amazing daughter.

So, I was diagnosed with a brain aneurysm (I laugh that people call it an “annie”, but I think humor is part of the recipe for success here) February 2 of this year. Let’s see… it’s 4mm in the right posterior communicating artery. I saw a neurosurgeon, Dr. Arnold Vardiman, who provided me with his professional opinion and suggested conservative treatment with imaging at 9 month intervals. If that wasn’t enough, he insisted I get a second opinion and saw an interventional radiologist (IR) who explained in tremendous detail what he thought of my aneurysm after looking over my images and exploring my medical and family history. Both the IR and neurosurgeon explained to me the risk of surgery vs. the risk of leaving it alone. They both explained that they would advise me against getting the surgery if it wasn’t absolutely necessary at this time. My wife has been such a blessing, and she has gone with me to all appointments. She asked the IR to explain in detail what the surgical procedure would be like if I opted to go against the advice of two professionals and insist on the surgery. He then explained the coiling procedure, the risk of something going wrong during the surgery (very small, but overall risk would be compacted in those few hours in the OR) and what recovery would look like. After all of that he, too, decided for conservative treatment with imaging at intervals.

So, here I am. For the last few months I have put this out of my mind. Sometimes I would think about it, but didn’t really phase me much—this wasn’t the case in the beginning, after diagnosis, I was a wreck! I have the utmost faith in the doctors that are treating me and I returned to my daily activities, although with some modifications. I don’t smoke, have high blood pressure, family history, none of that. I have taken up less strenuous exercise, I eat much better, meditate when I can (still need to be more consistent about this), and have been seeing a counselor for other things, and have not thought about the annie at all.

That was until this past weekend when I read on an online forum something about brain aneurysms, and the terror came back in earnest. Despite the advice of my doctors I let the uncertainty, the what ifs, get to me. I could not stop researching—I must have gone through every major study I could find on these things, watched webinars, you name it—and this caused a lot of emotional strain. I couldn’t stop thinking about leaving my family behind, of “what if it happens when _____”, of all the questions one could think of as if their mortality was about to become extinguished that very moment… Yet, I realized amidst all of this fear, who a new friend referred to as “a dirty player”, that I have made it 6 months past my diagnosis. Some people never get a warning with this thing, some get a warning and they can do something about it, and everything else in between. We are not promised a tomorrow. This is something I have had to accept, and is a source of victory each day I am grateful to be here with my loved ones.

However, I would not have joined this forum had I just been content with my experience thus far. My renewed curiosity with my condition has invigorated me to seek out other like-minded people—people who have experience with this diagnosis. I’ve often struggled to find my purpose in life, but I feel that purpose is revealing itself through faith. I have not always been faithful, in fact I have struggled throughout my life with it, but I feel the time is right for me to fulfill that purpose. I used to want to control every aspect of my life, every single detail. The diagnosis demonstrated to me that somethings are out of my control. But not everything. In fact, the diagnosis is revealing itself at times to be quite liberating. Don’t get me wrong, I wouldn’t be writing to you all today if I wasn’t at some level still a little freaked out about all the research I’ve done the last few days, but the fact that I have reached out, that I have made it six months past diagnosis, that I have survived my marriage nearly imploding, physical therapy for my spine (this is how the incidental finding was revealed), that I have truly excellent care… it’s all demonstrating the blessings presented to me.

But that’s not enough. My strength for me is not enough. I have read these boards the last two days and I have read stories of people who have gone through much, much worse than me. I can’t imagine your strength. I can’t imagine what you have gone through. But, you survived it, and some of you have inspired me to reach out here in the hopes that we can all lift each other up and provide light in each others’ lives. This is what I feel God has been trying to tell me for so long, and I have been ignoring it, and ignoring it and ignoring it. Yes, we all have much to live for. But, we may not be guaranteed tomorrow. Yet, here we are as strangers, but no longer strangers because of our shared experiences. We are all friends, a kind of “soul society” (to borrow a phrase that my brother shared the other day via text and is also a loose interpretation from a song by the power metal band Kamelot).

I don’t know what the future brings. I have my next appointment in a few months and if the aneurysm has grown, then I will deal with what needs to happen then—there is no use in freaking out about something I have been reassured of by people who have actually studied and come face to face with these things.I hope that I am blessed with many more good days, hell, I’ll even take a few bad ones. I’ve struggled with trying to decide whether or not I should just get it operated on or simply wait. I am not sure I could live with the knowledge of it being there forever. Boy, this has been cathartic…

I guess I fit into a different category here as someone currently living with an unruptured aneurysm. There are a lot of survivors here and I hope to find others like me. But, I would welcome the opportunity to make meaningful exchanges with any of you.

Anyway, thank you for reading this.

Your friend from the South,
Rafa

2

Rafael,

Welcome to the group. I am a ruptured aneurysm survivor. Mine occurred in the vertebral harboring the PICA as a large fusiform aneurysm (10mm x 8mm). Unfortunately, it ruptured by the brainstem so I am dealing with issues with hearing, vision and balance. But, I am alive and still independent. If you are researching about aneurysm, I recommend reading about pioneers like Dr Robert Spetzler and Dr Michael Lawton. In the 1970s, MRI and CT scan were developed. In the 1990s, endovascular techniques were developed. The life expectancy of surviving a ruptured aneurysm was not very good but with medical advances which are still continuing, there is hope in improving survival rate. Here is a good article on treatment of aneurysm which was written in 2003. From this point, new methods like Pipeline and improved advanced imaging were employed. It is good that you did your homework. Sometimes, I get bummed out with my disorders after my rupture. But knowing that it could have been much worse without medical advancements gives a feeling of hope and that I was the luckiest man alive to survive a ruptured aneurysm by the brainstem.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC539625/

3

You’re an inspiration—I hope that you realize this. Your experience, as harrowing as you describe it, provides hope to others. You’re absolutely right, the more researchers (doctors) have been able to study these things, the better they have gotten at prevention and treatment. I’m still mulling over my options, but feel that after my next imaging that I will ask to have this thing treated—my nephew was just born 3 months ago, my daughter is in college, and my 5 year anniversary is coming up in a few weeks; I feel that these are reasonable enough things to want to live for. I was just looking into pipeline and your point about these advances does provide hope! Wow, can you believe they can actually do that?!

Anyway, I’m truly glad that you survived and I am sorry to hear about your deficits. However, what makes me happy about your message is that you mentioned being independent. That’s awesome right there!

I’ll take a look at that study you linked!

I hope you have a wonderful day 2Fight!

4

Rafael,

Wow, it looks like you have a lot to celebrate. Just want to share some information regarding procedures (clipping, PED, coiling). The latest and most advanced procedure may not be the best option. It depends on the skill, opinion and knowledge of the NeuroSurgeon. At a recent lecture that I attended, statistics were shared on success rate of “hospitals of excellence focusing on aneurysm” vs Non where hospitals of excellence showed a greater success rate than Non. In these hospitals, your case will be reviewed by the entire staff of Neuro-Surgeons for the best approach so there is no bias. If there are local aneurysm support groups in your area, I recommend that you attend.

5

2Fight,

The info you provided makes sense. Fortunately, the city where my neurosurgeon resides has a large neurosurgery teaching hospital. If and when I decide to get this surgery, I know I will be in the hands of very skilled professionals. Things have gotten better since I first started reaching out and there is a group in my city that meets a few times a year—I will definitely be seeking them out. I feel the wait and see approach can be a trying time for anyone dealing with this. While I have faith in the doctors I have seen, there is that part of me that is cautious (I attribute that to all the reading I’ve done). At the end of the day, these people have actually been inside a person’s brain, or inside their arteries. Their experience and training is worth something very valuable.

My wife is happy that I am reaching out to others in my situation and I am blessed, truly blessed, to have someone so supportive. I spoke with her yesterday about future plans once my next imaging appointment comes and goes: if the aneurysm grew then the treatment option is obvious. This morning I have been a lot more “chill” than I have been in recent days, and I feel things returning to normal. I pray, here and there, and ask God for his understanding and for him to take away the worry. I am amazed at how he is able to do just that. This, I have discovered, is the best thing one can do: is to rely on a will stronger than your own.

2Fight, I appreciate the time you’ve taken out to chat with me as your company provides me with solace that was sorely needed. Thanks for hearing me out.

6

Hi Rafa,

I’m a new member also, and just read your story…thanks so much for sharing, and I can identify with much of what you wrote. I was diagnosed about 18 mos. ago with a 4mm pericallosal artery aneurysm, and went to Mayo for an evaluation, They recommended monitoring it/having a MRA every six months to see if it gets bigger, and if it does, then to have surgery. I’m not a candidate for coiling, only a craniotomy/clipping. I can so identify with the anxiety you mentioned experiencing, and the difficulty with taking the “wait and see” approach. It is so hard in many ways, though I find I am more at peace emotionally with the decision 18 mos in. I am 48.

How are you doing with your process? Would love to hear how you’ve been. Thanks again for your posts, they have helped me so much.

7

I apologize it has taken me this long to reply. I’ve been doing… very well actually, thank you for your concern. I am humbled and glad that my posts have been able to help you. This was the impetus behind joining this board. At the time I was battling a sense of dread that is only possibly understood by others with our condition. 18 months in, way to go! I think your experience, as well as mine, is indicative of something I came to learn through this process: this is not a death sentence. The funny thing, for me, is that I found a real reason to live after my diagnosis. Perhaps, up until this revealed itself to me, I had been sleep-walking through life. I was not living the life I know I was capable of living. This diagnosis forced the issue. As awful as it may sound, I am grateful for my diagnosis. I can hardly recall a time when I have felt so liberated. I wish I could divulge more details, but just know that I firmly belief that this diagnosis was a wake up call of sorts. Like the specialists I have seen, some of the best in the country, have told me, “incidental” does not mean “imminent”. I know you’ve probably been told this already, but those with an incidental finding are truly the “lucky” ones. What do we do with this luck? By helping you with my posts, by helping one another, I think that we are using that fortune to a good end. By living honestly, by living better, I think that we are also doing the best we can. It is my understanding that these conditions may be quite common in people and that many will pass on due to something completely unrelated. This brings me solace. I could pick apart every statistic, but that wouldn’t do me any good. It would just perpetuate the dread and fear that doesn’t deserve a second more of my time. I have had to be at peace with the fact this exists and that I am doing the best to manage the situation. It really doesn’t need to be more than that. We are here for one another and I want you to realize just how strong you are: it’s been 18 mos. you’re still here; love and enjoy your life. A ruptured aneurysm survivor once told me that “fear plays dirty”. Don’t let it win. The knowledge of the aneurysm gives us an advantage, I feel, in doing with life what we really want. You see, no matter the circumstances, we are all going to die one day. That’s a fact. We have to accept it. We can either choose to die and stop living because we have an aneurysm or we can see this is as an opportunity to really do the things we have always wanted to do, to be the people we have always wanted to be, and to make the best of the time we have been given. I’ve had to change some habits that were damaging to my health and I am glad that I was given the opportunity to do so because intuitively I knew that change was necessary. I’m rambling. I hope this finds you doing well.