I set a date for surgery. I have a ton of support from my husband and family.
But, I am having horribly morbid thoughts. I want to write my kids letters before surgery in case I die. I want them to have a keepsake, something they can read to remind them of how much I love them. I want to renew my vows with my husband so he knows how much he means to me. I want to rewrite the will so I can be sure things are taken care of properly, so everyone knows my burial wishes.
It’s almost like (in my mind) I’ve just scheduled my demise.
I can’t shake it. I’m trying to be normal at home so I don’t freak my husband out. I don’t know why I have it set in my head that I’m going to be in the small (very small… very small) percent of people that don’t make it through surgery. I’m not the drama queen type so I don’t know where this horrible fear/feeling is coming from.
It’s (on top of my daily chiari struggles) interfering with my whole day. It’s all I can think about. Honestly, I know I just need to get an effing grip. I am and have always been so strong. What the hell is going on?!?!?!?!?
I’m writing on my iPad in limited light right now…so sorry for any grammatical and/or spelling errors 
Im sorry that you are having these feelings. My thoughts are go ahead and write your letters, nothing wrong with that, it may release some of the anxiety.
I have felt this way to, to some degree when I had cervical surgeries. I couldn't image myself after the surgery, as if I wasn't going to make it. I think your feelings are very real, validated, and most importantly normal. Validated not because something is going to happen, but because its surgery, and all surgeries are scary. I dont think the big man upstairs would give you this dx, make it able for you to find someone to help you with it, just to take you away. Your going to be fine.
It is completely normal to feel this way! I had my surgery 3 weeks ago and went through the same thing! I am a single mom of a 13 year old boy and was terrified about what might happen to him if something happened to me during surgery! I am even emotional typing this right now! I just really tried to stay positive and I prayed a lot! It is very hard, but I am sure you will be absolutely just fine. I tried to keep myself as busy as I could during the day, but at night it was a lot harder to try not to think about it so much! The only advice I can give you is to just try to stay positive and keep telling yourself you will be just fine and everything will be ok! Praying definitely helps too!
Missy
Thanks so much for everyone’s responses.
When I was 5 I used to write notes to myself that I wanted to die. I knew I was different. I knew something was wrong. I knew that i didn’t fit in. But I wasn’t old enough to verbalize it. So I wrote horrible notes to myself.
My mom found them. Put me in therapy.
Fast forward 10 years…I still didn’t fit in. I was unorganized, unhappy, and still unable to express why. My mom took me to a mental illness convention and tried to convince me I was bipolar and schitzo (sp?). I was not like the other people there. I knew it. I knew that was not my issue. I could see my mom’s desperation to figure out what was wrong with me. It was hurting her to see me hurting. I went home that night and tried to kill myself. I couldn’t keep putting her through my misery.
Fast forward another 5 years. Same boat. Same feelings. Another suicide attempt. I felt my kids and husband deserved a better, healthier mommy and wife. My husband never knew about this suicide attempt because he was deployed.
Fast forward another 5 years…diagnosis.
All those years I wanted to die. I wanted someone to kidnap and murder me so I wouldn’t have to do it myself. I wanted to get hit by a car. Die in a plane crash. Anything.
Now that the possibility of death is here I am terrified of it. I don’t want it. I want to be healthy and be the daughter, wife, and mommy that everyone deserves. There’s a part of me that is worried that since I’ve wished death upon myself for so long that it’s now going to happen. Now that I don’t want it. Now that I finally know I wasn’t crazy all those years.
I’ve never told anyone all this before. I’m crying as I’m typing.
I guess I just needed to get it out. And to know that my fears are normal. And that my feelings are normal. I’ve wanted to be ‘normal’ for 29 years. And now I’m terrified that I’m on the verge of it, but I won’t live to actually see it become my reality.
I’m going to write my letters. I’m going to let my fears be real. But I’m going to try to not let them consume me.
Thank you so much for listening. It was more helpful than you can imagine.
I am 9 months post op…I did all those things: wrote letters to everyone ( even my ex husband whom I have been divorced from for 19 years with no children). I planned my funeral ( which our priest has us do any how, jut not usually before a surgery). When I read over them after, I realized how I,portent it is to live each day like its your last. My husband tells everyone our anthem is ‘Live like you were dying’ by Tim McGraw. I am a happy person now because I don’t take anything for granted. I also think that writing those letters gave me an outlet for my feelings.
PS… I never gave the letters to any of the people I wrote them to, I have decided to tell them in person, every day, how much they mean to me. Best of luck to you…do what makes you feel better!
I dont have my surgery scheduled yet but I am having these feeling already too. I too have always felt different and never quite fit in anywhere. I never feared death and have done some pretty stupid reckless things. But now that there is a possibility of surgery going wrong and dying I am so scared to even schedule it. I know there is a chance of dying in everyday life almost everyday but this would be my choice because I would be the one scheduling the surgery.
I have these feelings too. I am a very positive person but the thought of leaving my husband and my children behind scares the crap out of me! I’m most scared of, not of the op but does freak me out a bit but being wheeled down the hallway, through the doors away from my family. I can’t help thinking what if??? Cheers
I can't tell you how rare it is to come across threads about how intense the emotional side of Chiari can be. This isn't the time or place for me to tell you my whole story, but in short, I've always known there's been something wrong, and it's been very long, dark, and lonely time.
I'm scheduling my surgery/test dates right after I write this because I believe I have found the right procedure and NS to do it. I have faith in him, but I also have faith that everything is going to be alright no matter what!
I know this is easier said than done but it's time to be focused and rational and leave it at that. Are you currently taking any medications? Most doctors are hesitant to put people like us on the meds that would actually help us because it takes more effort on their part to monitor/trust us... basically it can be risky. I personally take Adderall when I wake up and again in the afternoon. It's a powerful stimulant but it allows me to be awake during the day and is the only thing that has ever helped my depression. I also take Klonopin for anxiety/pain during the day and for sleep at night.
I am not suggesting you take these exact meds... I'm just telling you what works for me... I've been labeled throughout my life as well - bipolar, schizo, add, adhd, post-traumatic stress disorder, etc.
I've even checked myself into a clinic... don't ever do that!
What I'm trying to say is that your chemistry is off and you need to recognize it, and take control. You have to separate the Truth... from all the less likely or false things that you've been told or have come up with in your own head. I know this is hard because you are probably very creative and intelligent, and are able to visualize things on an amazing level.
Right now, the truth is what's important. Yes, surgery has risks. The truth is - you have less than a 0.1% chance of something bad happening. On the flip side, without it, it seems like we have a 100% chance of nothing we've been suffering ever changing.
Don't let anything rule that spirit inside you that's been keeping you alive and strong throughout all your life. You can do this. You can be positive. The more time you spend being positive, the less chance negativity has at ever creeping in. Find positive things and people to help you through this. And always have faith, because like I said before, everything is going to be ok no matter what.
What you and your husband have to do is ask yourselves if you have faith in your NS and their plan for you. If you don't have enough information to make that judgement, then start asking your doctors questions or get other opinions from other NS's.
I hope this helps. Best of luck and much love to you and your family <3 :)
I know exactly what you mean Emmaline. I used to have a coworker that constantly missed work due to migraine headaches.. I remember not taking her it seriously at all, and honestly thought she was flaking out.
Now that people are looking at my wife in the same way, I feel like i have a whole new perspective
I love this site....I to have the same fears and thoughts, but I am trying to stay positive. Thank you Bill for your thoughts and words...is the 0.1 really a statistic?
I also felt the same way as you do now. I made plans for my daughter three times in case I wouldn't be here for her. I also wrote letters to my family & close friends. I don't know what to say ....well maybe I do.... My Chiari was diagnosed too late & it was either be a quadripledgic or have decompression, crainectomy & laminectomies on C1- C6. It was 16 hours worth of surgery. Then hell everyday of my life since that day. I know Chiari stinks !!!! I also know you have a place deep inside you that your survivor mode comes from. You as well as every Member on this site is a Survivor. Think about all your loved ones & get mad & get mean. You will survive this for everything that is dear to you. Don't think of yourself as a victim. You are going to be great !!!! You are going to feel better & get part of your life back. Think of your surgery as the first step back to becoming yourself again !!!
You are going to do great ....Just keep telling yourself that!!!
Great Post Bill....Please let us know about your new NS & any surgical plans.
Tracy
Bill Zern said:
I can't tell you how rare it is to come across threads about how intense the emotional side of Chiari can be. This isn't the time or place for me to tell you my whole story, but in short, I've always known there's been something wrong, and it's been very long, dark, and lonely time.
I'm scheduling my surgery/test dates right after I write this because I believe I have found the right procedure and NS to do it. I have faith in him, but I also have faith that everything is going to be alright no matter what!
I know this is easier said than done but it's time to be focused and rational and leave it at that. Are you currently taking any medications? Most doctors are hesitant to put people like us on the meds that would actually help us because it takes more effort on their part to monitor/trust us... basically it can be risky. I personally take Adderall when I wake up and again in the afternoon. It's a powerful stimulant but it allows me to be awake during the day and is the only thing that has ever helped my depression. I also take Klonopin for anxiety/pain during the day and for sleep at night.
I am not suggesting you take these exact meds... I'm just telling you what works for me... I've been labeled throughout my life as well - bipolar, schizo, add, adhd, post-traumatic stress disorder, etc.
I've even checked myself into a clinic... don't ever do that!What I'm trying to say is that your chemistry is off and you need to recognize it, and take control. You have to separate the Truth... from all the less likely or false things that you've been told or have come up with in your own head. I know this is hard because you are probably very creative and intelligent, and are able to visualize things on an amazing level.
Right now, the truth is what's important. Yes, surgery has risks. The truth is - you have less than a 0.1% chance of something bad happening. On the flip side, without it, it seems like we have a 100% chance of nothing we've been suffering ever changing.Don't let anything rule that spirit inside you that's been keeping you alive and strong throughout all your life. You can do this. You can be positive. The more time you spend being positive, the less chance negativity has at ever creeping in. Find positive things and people to help you through this. And always have faith, because like I said before, everything is going to be ok no matter what.
What you and your husband have to do is ask yourselves if you have faith in your NS and their plan for you. If you don't have enough information to make that judgement, then start asking your doctors questions or get other opinions from other NS's.
I hope this helps. Best of luck and much love to you and your family <3 :)
You are 100% right. I have only read very, very little about the emotional side of this. I scheduled an appointment with a doctor for Wednesday in hopes i can get something for anxiety and pain. I've always been leery of using medication. I prefer THC. It calms my anxiety more than anything I've ever tried. However it's controversial and I live in NY so I can't find a legal way to obtain it. I don't know if my symptoms are getting worse because I'm stressing out so much, but I woke up this morning going on day 2 of one of the most intense headaches I've had, I've lost vision in my left eye and feel like someone if pouring water down my face. I'd just about give my left arm to smoke a damn joint right now.
Funny you mentioned checking yourself into a clinic. I did too. It was horrible. I was in for 4 days before they let me go. I felt even more crazy once I left. They tried to convince me that I needed to stay, that it was all in my head (haha) and that I NEEDED them more than I was admitting to myself. So I played along like a good patient and when I got the chance left and never looked back.
Thank you for the kind words. I am giving it all I got. As much positivity as I can muster. I will not let this define me. I will not let this take control. However, I have my moments of weakness, as I'm sure we all do. And since no one in my life really knows what it's like to be me I get the "be strong!" and "It's almost over!" lines. And I know they say these things because they don't know what else to say. And it's all coming from a place of love. But sometimes I get tired of being strong. Sometimes I want a moment to allow myself to give in to the fears in order to process them.
It's wonderful to be able to come here where people get it.
Bill Zern said:
I can't tell you how rare it is to come across threads about how intense the emotional side of Chiari can be. This isn't the time or place for me to tell you my whole story, but in short, I've always known there's been something wrong, and it's been very long, dark, and lonely time.
I'm scheduling my surgery/test dates right after I write this because I believe I have found the right procedure and NS to do it. I have faith in him, but I also have faith that everything is going to be alright no matter what!
I know this is easier said than done but it's time to be focused and rational and leave it at that. Are you currently taking any medications? Most doctors are hesitant to put people like us on the meds that would actually help us because it takes more effort on their part to monitor/trust us... basically it can be risky. I personally take Adderall when I wake up and again in the afternoon. It's a powerful stimulant but it allows me to be awake during the day and is the only thing that has ever helped my depression. I also take Klonopin for anxiety/pain during the day and for sleep at night.
I am not suggesting you take these exact meds... I'm just telling you what works for me... I've been labeled throughout my life as well - bipolar, schizo, add, adhd, post-traumatic stress disorder, etc.
I've even checked myself into a clinic... don't ever do that!What I'm trying to say is that your chemistry is off and you need to recognize it, and take control. You have to separate the Truth... from all the less likely or false things that you've been told or have come up with in your own head. I know this is hard because you are probably very creative and intelligent, and are able to visualize things on an amazing level.
Right now, the truth is what's important. Yes, surgery has risks. The truth is - you have less than a 0.1% chance of something bad happening. On the flip side, without it, it seems like we have a 100% chance of nothing we've been suffering ever changing.Don't let anything rule that spirit inside you that's been keeping you alive and strong throughout all your life. You can do this. You can be positive. The more time you spend being positive, the less chance negativity has at ever creeping in. Find positive things and people to help you through this. And always have faith, because like I said before, everything is going to be ok no matter what.
What you and your husband have to do is ask yourselves if you have faith in your NS and their plan for you. If you don't have enough information to make that judgement, then start asking your doctors questions or get other opinions from other NS's.
I hope this helps. Best of luck and much love to you and your family <3 :)
Well said Tracy. My family and friends have this look of sympathy when they look at me. Like I am a victim. And I don't want that. I don't want this to be what defines me. I want to be Lindsay the mom, wife, daughter and friend. Not Lindsay who is sick who is also a mom, wife, daughter and friend. So onward and upward it is! I can't wait to meet my real self for the first time. I've always felt like there was a part of me being silenced. That I could have been so much more awesome than I am, but something was always holding me back from my full potential.
Reading all of your comments and stories has given me so much faith and strength!! You are all so strong! It's great to be in the company of all you!
TracyZ said:
I also felt the same way as you do now. I made plans for my daughter three times in case I wouldn't be here for her. I also wrote letters to my family & close friends. I don't know what to say ....well maybe I do.... My Chiari was diagnosed too late & it was either be a quadripledgic or have decompression, crainectomy & laminectomies on C1- C6. It was 16 hours worth of surgery. Then hell everyday of my life since that day. I know Chiari stinks !!!! I also know you have a place deep inside you that your survivor mode comes from. You as well as every Member on this site is a Survivor. Think about all your loved ones & get mad & get mean. You will survive this for everything that is dear to you. Don't think of yourself as a victim. You are going to be great !!!! You are going to feel better & get part of your life back. Think of your surgery as the first step back to becoming yourself again !!!
You are going to do great ....Just keep telling yourself that!!!
I'm sorry you are having all of these fears, I remember feeling the same way about my son when I scheduled his surgery. It was a horrible feeling that I was spending my last days with him. I made every moment count, he has had his surgery and I still do this. I would do all of what you are thinking, although no you most likely won't die it's not a bad thing to have done. Write your kids the letter, write your burial wishes, write your will, I don't think in any way doing these things means you will die, but it does mean that you prepared for the worse whether it's tomorrow or in 50 years down the road.
My best friend is an ER and palliative care doctor. She told me this:
"Plan for the worst; expect the best."
Good luck to you. Let yourself write those letters and that will, and then also see if there are things that can distract you. I watched four hours of Lord of the Rings the night before surgery, and I do think the distraction was good. On the other hand, Ferris Bueller's Day Off might have been even better!
mj said:
I love this site....I to have the same fears and thoughts, but I am trying to stay positive. Thank you Bill for your thoughts and words...is the 0.1 really a statistic?
It's an average statistic really... I wasn't even referring to anything specific.
I mean it depends on what shape you're in now, what procedure your having done, and the experience of the NS. You can, and definitely should, ask your NS how often they operate on CM's. You can ask them anything you want! :)
The only thing you they cannot do is guarantee that your symptoms will resolve with surgery. Current statistics are hard to find but organizations are working very hard on that right now. My NS said that the patients he's followed up with for over ten years after their operations are doing great!
Syringomyelia is a whole other ball game. If you catch it quick enough and you are properly decompressed, everything should resolve just fine.
I guess the main point I'm trying to get to here is (haha)...
We are at a turning point right now in Chiari Malformation treatment, diagnosis, and awareness. Neurosurgeons have been operating on them for many years now (over 50?) and a lot of research has already been done and confirmed. There is still a lot to do, a long road ahead... but we are in great hands right now and the future looks so bright that it's ridiculous. ^_^