Getting Thru Sad Moments and Survivor's Guilt

General
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Hello one and all:

I am David. I am 44 yo male who on Feb 11th 2011 suffered the worst headache of my life. I woke up that morning with double vison. If it hadn't been for my wife coming home and tell me we are going to the ER, I wouldn't be here typing this today. After several people looked at cat scans and MRI's one neurologist spotted my "annie" behind my right eye. I was rushed to UVA medical Center on a Friday night and had my "coiling"done on Feb 13th. They told us at that time I am the proud owner of 8 titianum coils.

By the time the shock wore off, I started reflecting on what had happened. The only thing I knew about aneurysms was that my best friend of twenty years and another friend's mother had died of theirs. I remembered how everyone was shocked and freaking out over why it happened to them and why they left so quickly from this world. I had a hard time(and still do) getting over the fact that my friend was gone. My last memory of her was in ICU on a breathing tube.

For the most part my recovery has been good. (Humor was the only thing keeping me from falling apart.) I am blessed that my headaches have decreased and when one comes I don't freak out like I used to do. The only lasting physical issue I have is that my right pupil is larger that than the left. If I am outdoors I have to wear sunglasses. Once a month or so I get what I call "light sensitive attacks/headaches" that last about a half day.

It has taken about 6 months for my energy level to get better but like everyone else I have "drain" days. There are some days when I feel like I am "all thumbs" and it feels like I can't do anything right. For my 6 month followup they had to add more coils. My doc said that the likelihood of that happening was less than 1 percent, but as luck goes I was that one percent.

I know I am blessed for my recovery, hell for that matter than I am still here, but recently I have been feeling sad, (don't know if you call it depressed or not) and I think I am going thru some type of survivor's guilt. Everyone knows the probing questions, why did I make it but my friend didn't, why are you feeling this way knowing how blessed you are while others are worst off than you...etc. I can't help why the way I am feeling but it is starting to concern me. If anyone else has been thru this situation or would like to "throw their soap box to stage" please do so. I welcome all comments. I have read some of the experiences on this site but need more. Thanks in advance and sorry for being long winded.

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Wow ! Thank you for articulating your story so well because it's so important for people to understand they are not alone! I really appreciate that you can review the physical healing - even though you'd probably like to forget it - I've been out of the hospital for about 90 days (I was flat on my back in and ICU for 23 days), I am still so tired but my headaches are improving and I am loving that. I'm down to about one headache a week, so reading that you used to freak out is... well, a total relief, frankly! So, thanks so much for expressing that vulnerability.

As far as mood-wise, I'm still in the phase of "just dang glad to be here" but have frequent thoughts of "why am I still here when so many who are so much more deserving did not get to stay?" and "if God missed me last time, am I still on the list for that next car ride/airplane trip/walk across the street?" (I really hope God doesn't work that way, but you hear all the time about people who survive one thing only to get squashed like a bug by another)..... hmm happy yet? sorry about that - but, it's what we're all thinking.

Since some of us don't have a big scar or, in my case, to look at me you wouldn't know at all that I have a wad of platinum wire in my head (that I try not to visualize too much because it's probably looking pretty icky by now), so how can I know what is right and wrong or "deserving" or how lucky I am compared to X. I found out about a mother of 3 had an aneurysm about the same time I did and is still in a wheelchair and living with her parents when I'm back to work, living on my own and complaining that I have reduced feeling on my left side ("waaa I can't feel the difference between socks in the sock drawer waaaa"). Why was she so much worse off than I? Because I have better insurance? or got flown to a better hospital? What if I would have gotten sent home twice with a migraine diagnosis like she did ..instead of the stubborn sister / instant diagnosis/ clear day /great pilot/ working helicopter /awesome surgeon available / steady hands / quick thinking etc. I can make myself crazy thinking of the 8,000 things that went right that day and the following days that separate me from the others whose situation didn't turn out the same way.

Yikes, reading that I'm not sure what to think except that I'm still of a mind that I'm supposed to be here and I plan to do my best to keep trying to live a life deserving of all the nice things people said about me when they thought I was dying.

So, I thank you for your story because it's all so similar and they say that part of the healing is getting it out and reviewing it so, I think I'm helping myself by writing this and keep reading others' thoughts and their stories to help me keep it in perspective. so, I also appreciate the forum and I think you're helping yourself as well as others by keep asking the questions. It would have been much easier for you to walk away and forget all of this and say, "I'm fine" because all I have left is this thing with my eye that's pretty interesting at cocktail parties and I'll bet unless you point it out to people they don't notice..and you probably don't point it out because they look at you funny after that.. I love the tilted head, "how ya doing?" look I get when I tell people about what I went through -- geez, I know people are just trying to be nice and they're scared too because it is so scary and random, so I still try to be nice and gracious, because I know that most people are truly kind and just as scared as I am. Not much help and probably too long winded, but thanks for asking.

Keep getting better, blessings and best wishes and thank you again!

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David,

I’d like to tell you a little about my story. I was taken to the hospital for what I thought was a heart attack, only to find out that I had 2 aneurysms in my right and left internal carotid artery both at the opthalmic artery. Now my older sister, just a year and a half prior, had a 5mm annie in the anterior communicating artery clipped. About 30 years prior to that, I lost my paternal grandmother and her brother both from brain aneurysms. As I was young when they both passed from their annies, there is no real medical information available as to what types and where they were. So, seems like my father's mother's side of the family are the annie people in my family.

When my annies were discovered I think my best friend said it well. I was "clinical" in that I just repeated everything that the doctor told me regarding my annies. My 9mm was going to be coiled (which failed because the mouth was too wide and the coiling would not have held). My doc told me that clipping was not an option as the annie was too close to the optic nerve and the possibility of blinding me was extremely high. Luckily for me the FDA had just one month earlier approved the PED for use here in the US and I am now the owner of 2 telescoped pipeline stents in my right ICA. My 2mm annie in the left ICA is on a watch and see how it goes.

I will tell you that 3 weeks after I was home and feeling good and thinking all was great, I fell into a depression where I could not even get myself out of bed. It scared the hell out of my husband because I have never been depressed a day in my life and he did not know what to do! He called my mother, sisters, my best friend and just cried and said, help me I don't know how to handle this! I had returned to work for 2 days, but became terrified of driving my car, walking, breathing and basically worrying and wondering about the annie, why it happened to me, would my untouched annie rupture, why did I survive when so many other people have not and things of that nature. It was a rollercoaster of emotion that I quickly wanted to get off of!!

I truly believe that finding this site saved my life!!!

If it wasn't for me reading all the wonderful enlightening, sometimes truly sad and sometimes truly happy stories of survivors and their caretakers, the realization that there are no explanations for why annies rupture versus why they don't would never have made sense to me. Logically, my idea was that when the body was sick it told you, right? You get a cold, your nose runs, you get a stomach ache or the flu and you may vomit, you fall, you may sprain or break a bone, etc. So why, can't an annie give you the same? Why do some get "the worst headache of their lives" and live to tell the tale, and why do some get that same headache and never make it to the hospital, and why are some found incidentally, like mine? It's a question that not one of us here can answer, but we can all attest to.

I remember when my sister came home from her clipping surgery, her head was shaved, her scar ran from the top of her head down to behind her ear and she just looked GOD awful. When I came home from my PED surgery, I didn't look like I had just had brain surgery. I could not help but feel guilty to even talk about brain surgery with anyone who had a clipping because I didn't put myself in the same category as them. Boy was I wrong!!!! It was my sister who made me realize that it didn't matter that I had no scar to show anyone, like her, my brain was still subjected to surgery and that made us one in the same, regardless of whether or not I had a scar. And then I found BAF and I realized that we cannot feel guilty for surviving, or for having the PED surgery or a coiling because when it comes right down to it, we are all on the same journey, some of us are lucky to get the smooth road to it, while others, like many of the wonderful people I've met at BAF have to take the rocky road.

I just thank God every day for allowing me to be one of the lucky ones to have survived this terrible disease so far and I ask him to keep my other annie under his watchful eye and help me deal with whatever the future holds for that one.

It is normal the emotional feelings you are having. I am 4 months post op now and I just try my hardest to get out of bed and go to work and get through every day and for a few hours try to leave my annies locked up and put away to be analyzed at another time. The days of worrying about my annies and the what if’s and why for’s have become fewer and father between.

Thank you for sharing your story and I do hope that my story helps you put into perspective for you that although we are all different in our annie stories, we are all the same, survivors!

Best wishes to you for a continued healthy recovery,

Linda

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Prayers with encouraging thoughts and positive energy flowing your way!

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David,

I am new to this journey. Thankfully, my annie has not leaked nor burst. I am having coiling w/stent 10/24. Unlike you, I really don't know anyone who has had a brain aneurysm personally, but I am also a breast cancer survivor. Because bc is so prevalent now, I knew a lot (and still do) breast cancer patients.

Because of this, I liken annies to bc. Some are early stage (like me, not leaking) and some are late stage. Some do not make the journey. I mourned the ones who did not live, but rejoice the fact that I was able to see my daughter grown. I was on a drug for 4 years that made me really ill, put me on disability, broke a lot of bones, gave me 24 hr migraines and a quality of life I would wish on no one. I say this not because I pity myself or want pity, but it's the truth. I lived through it, am past it, am a 10 yr. survivor. During this time, I did suffer depression and was put on an anti-depression medicine that really helped. I also had therapy, which I had never had.

Rejoice that you lived, reach out to people - you have a purpose, whether you are religious or not. I volunteer a lot, in fact I am probably just as busy now as when I was working 60 hrs a week. My memory is horrible now, which bothers me, but I can live with it. There is a purpose in your life - remember that and embrace it. Even if it is only to be there for those you love and who love you.

Sherri

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Proud owner of 8 titanium coils, huh? Congratulations! I happen to have several platinum coils, a few titanium plates, and a titanium clip. I figue if I ever go broke I can pawn my head!

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Hi David , warm wellxome in our great community.
February, 11 th is my birthday ( your day ) and I had my rupture on february, 16 th 2009.
I had coils and 1 year later I get the PED stent.
Be sure you are in the right place, please take your time for the recovery and take care of you.
Best wishes from Italy.
Giovanni

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Cec,

Thanks so much for your reply. After reading your response I appreciate your point of view. Your thoughts about mood wise really put things in perspective for me. For the longest time (I am in my eighth month of recovery), I was so concentrated in thinking about the physical perspective of my condition that when started to experience the mental aspects it really freaked me out. Here I was thinking of the depression as a setback when I should be thinking of it as part of the healing process. I can only hope and pray that I can continue thinking this way and think of as a side trip of my journey. May God Bless you and your family.

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Linda,

Thank you so much for your response. You and your sister have definitely went thru a lot with your “annies”. I know the feeling about talking to people especially when they ask about what I went through and they tell me, “hey it doesn’t look like you had brain surgery, but you look great.” I guess most people tend to be sympathetic when they see the physical side of one’s condition, but few seldom concentrate what isn’t seen.

I am so thankful to wake up everyday and thank God for my blessings. I know that He only will give me what I can handle and that I should be more grateful. I thank you for your story. It was certainly NOT long winded and it did help me put some things in perspective.

May God Bless you and your family. Take care.

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Thanks Karen. May God Bless you and your family.

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Sherri,

I thank you for your kind words. I hope and pray all goes well on 10/24. You are a remarkable lady who has preserved a lot with breast cancer. Until recently I thought I had a pretty good hold of what I have experienced but life loves to throw a lot of curve balls… I am thankful I have faired a lot better than others I have read on this site, but we are all human and unfortunately we do have breaking points. I can only hope that God gives me the strength and wisdom to endure my journey.

God Bless you and your family.

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Thanks for the humor, Daphne. You made my day. Hell I forgot that I have titanium block and screws in my neck from an earlier surgery in January 2011. I could almost compete with you.

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I wanted to add a little more to my history. In addition to this journey, I have also had three lower back surgeries, a C4\C5 spinal fusion in my neck in the past dozen years. I also have rheumatoid arthritis. I am a walking medical phenom!!!
I also work as a police/fire/rescue dispatcher in a 911 center. I know what you’re thinking.: “Damn, he is glutton for punishment!”. Seriously though, I love my job, but it can really be stressful and I need to find a way to deal with it or maybe find something else. Only time will tell. Thanks for reading/viewing this. Take care.

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I hope you feel better, we all need to vent. You may need to see a therapist because we go through so much and it is hard to deal with, i am a survivor of a ruptured annie 10/19/2009 and there are days i feel like you. Ech day we never know how we are gonna get up and feel, some mornings for me are harder then others and nights sem to be good, go figure. We have bouts of high and low energy so get the rest you need, and you can write a novel if it helps, we’ll read it.

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Hi David ... I still see you as a survivor...God has a purpose for all of us...and it just wasn't your time...

Gotcha in my Thoughts...Colleen

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Giovanni,

My apologies for not writing sooner. I appreciate your kind words. I am definitely taking time for recovery but I am not the type to sit around either. I have gotten really better at pacing and knowing when to stop. If there is one thing I have learned from this experience is patience. Best wishes from Virginia, USA.
Take care.

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Laurie,

Thanks for your kind words and advice. I am not sure if I have enough material for a novel just yet, but I am sure it won’t take long to get. God Bless and take care.

David

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Thanks Colleen! We are all blessed to have the courage and strength to contribute to this forum. God Bless and take care.

David

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i think its normal to go thru this depressed-why am i still here stage…even though we have so much to be thankful for…as time goes on you will see why ur life was spared and wat ur purpose is for still being here…i had a 5mm rupture n oct 09…i know now im loving my family stronger than ever before n spreading the word for awareness to hopefully prevent future misdiagnosis with anny carriers…God has each of us here for a reason…to celebrate life and rekindle the spirits of those weve lost but contributed so much to our lives…wishing you continued recovery n helping others to learn how to live like theres no tomorrow…prayers n love coming ur way!God bless;)

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Hi David, I am a survivor of 3 aneurysms. I find myself feeling guilty all the time, I have friends who have lost their parents/brothers/sisters/aunts. and then I am still here, it makes me sad to think of all those who have passed due to aneurysms. I am not sure why but for a reason beyond my understanding I am here for a reason. I think maybe to educate people, maybe to continue with my plan on this earth, maybe unfinished business, I do not know but one thing I do know is that I will continue to live my life to the fullest and educate everyone around me regarding aneurysms. I wish you the best in recovery and know that you are not alone.. Most of us feel that way every day.. but continue to carry on until other wise ...