I'm a disaster.
I've never been so scared of something in my life.
I just finished writing letters to my kids and husband in case I don't wake up.
I have moments when I am ok with the idea of having it done.
And I have moments when I am just out of my mind scared that I'm gonna leave my babies.
I don't ever let them see me crying or upset over it. I don't want to make them nervous.
Oh my I am reallyyyyyy freaking out on the inside though.
I have those same exact emotions.
I am not sure if you believe in God? Or what faith you have. For myself and my family I relay so much on Faith that everything will turned out well. I do have my moments where fear does creep in and I think about my kids, my husband and family. This is a tough road for us. We have no choice other then to get better for not only the ones we love but for us.
It does help to have sites like this one where we can help each other out. Also, as scared as you may be and also as tough as we are. We really have to confide in someone and let our emotions out. Sometimes our daily mask that we wear eventually cracks. Family and friends will notice, and if you are like me its hard for me to show my emotions because I am usually the person that has to be strong for them ( I am the go to person in my family lol! ) for them to see me weak is scary. But as a friend told me "I have to let it go..."
I still have not told my extended family as of yet. This is something I will do over this weekend. It looks as if my surgery will be in September and I am scared but also excited that when all this is over I can finally feel like me again! My husband and kids can have me back : )
Cheers to you, I wish you the best.
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Thanks Anna :) I really needed a pep talk. I've never struggled with fear like this before.
I have yet to tell anyone but my husband, kids, mom and dad. I didn't want anyone to treat me weird. Or feel bad for me or look at me like I have something wrong with me. Most of them don't even know that I have CM. It's nothing I'm ashamed of. It's just been my normal for so long. People just think I'm silly, clumsy Lindsay. They don't know that I am clumsy b/c I can't stand up straight to save my life.
I've been struggling with my faith. I believe in God. I don't think he was a white man who died on a cross. My God might be a redheaded asian alien for all I know. I don't believe all of the bible is real. But I believe in the ideas that the bible teaches. I have faith that there is something bigger than us. B/c of my beliefs I've been told that I'm wrong. That I worship incorrectly. I went to a catholic HS which further pushed me from religion for a long time. I've been really trying to connect to God lately, but I've been struggling. Mostly b/c I feel like I'm doing it wrong.
I am looking forward to being better. Part of me is almost afraid of the new me. This is the me I know. This is my normal. I don't know why I'd be scared of the new, better me. But I kind of am.
You are not alone with your struggles. What Anna wrote below is very true and helpful. I had gone through many, many years of struggling and not knowing where to go. But it has been my faith in God and my family and friends that have been praying for me all the way. It is certainly understandable to have many kinds of emotions going through everything. Know that you are at a safe place coming here to share your thoughts and feelings with other that really care and understand on this site. Continue to share your struggles here with others, so you can continue to receive the support that you need at this time. I was so very ill last year and for quite a long time. I am finally doing so much better now. Keep sharing with others. God bless you, with love and prayers sent back to you for extra strength. Mary Lou
Good luck with the surgery. It's normal to be frightened with the prospect of having surgery. After having numerous symptoms for most of my life (I'm a senior citizen), in Dec 2007 I finally had an answer and a name for what my problem was. I had never heard of Chiari before and I WAS afraid I was going to die. When I expressed that fear to my husband, he said yes, you might, but you might not! That kind of put it in perspective for me. I had lived with it for a long time, as he pointed out, I'm proof that you can lead a long productive life with Chiari and raise children, hold down a job and be a wife. It wasn't always easy; but thinking back it might have been easier than if I had known that I had Chiari. I had my Chiari/basilar invagination/cervical surgery in 2010 and when I woke up the next morning, for the first time in a long time nothing hurt. I felt good after my surgery and didn't have any pain that the "fairy dust" couldn't take care of. I really didn't need a lot of pain meds. I did a lot of sleeping and was fortunate that I didn't have to deal with much except recovering. It took me a year after being diagnosed to make the decision to do the surgery; then I had to have three surgeries for a brain aneurysm discovered during testing for the Chiari surgery, so I didn't have the Chiari surgery for a couple more years. During that time I just kept telling myself that everything happens for a reason and when it is supposed to. I did do a lot of laying awake at night, talking with God, and working through it in my mind though. I do believe in a higher power and the ability of the one who put me together in the first place to "put me back together" through the hands of the surgeon and that everything works out the way it is supposed to. But.....I am human and I did have concerns of course about the surgery. I eventually came to the conclusion that by having the surgery I would be doing what I could to make my life better and hopefully free myself of worrying about what might happen if I did nothing. That thought helped me a lot when I was going in for my surgery and gave me a lot of peace of mind that I was doing the right thing. Hopefully you will be able to draw on positive thinking as well. It is a process to get to that point of thinking; but by the time I went in for surgery, I had a lot of peace of mind about it and was kind of excited that my life could be better. My kids are grown and I didn't have to deal with that during my recovery. That does make it harder because they require a lot of time and attention. Hopefully you will have some help with that so you won't have to stress about it. I find that children are very resilient and they understand our limitations more than you might think. My grandchildren were very protective of me after my surgery, took my hand to help me walk, and still look out for me. Everyone reacts differently to the surgery and everyone recovers differently . It's just so important to allow yourself time for recovery and not try to do too much too soon. Also, for me, I think the key to a good recovery was keeping myself in a good frame of mind, having reasonable expectations from the surgery, and expecting everything to be o.k. It's not always as easy as just saying the words; I oftentimes had to work on it. One thing that helped me a lot with my recovery was water therapy which I started before my surery and resumed about five weeks or so after surgery. I had always struggled with my balance; the surgery really helped that but the water therapy helped too because it made my legs so much stronger; I don't have the same problems with headaches, dizziness, vertigo, fogginess in my head and the balance issues that I had before my surgery. I'm still not perfect, but much better. I love the water therapy because it keeps me much stronger than I would be without it. And.....it is so much easier to do exercises in the water. I'll say a prayer for you and your family as your go through this difficult time. While it's scary to give up the "normal" which we are used to dealing with, you will be surprised how quickly your new "normal" becomes just your normal. Having the surgery was a blessing for me; my prayer is that it will happen for you that way too. Kinda long and rambling I know..........
Hugs
Shirley
I think it's important to have faith in whatever it is you believe in. Our thoughts and prayers will be with you and wish you the best of luck.
I agree with you that religion is a toughie. And.....I too think God means different things to different people. I know I struggle all the time with what I believe - but my common sense tells me somebody has to be in charge of all of this and I draw on that thought when life gets tough.
Beeba said:
Lindsay, I feel the same way you do about religion. Not sure mine is an Asian alien. Lol. But I can tell you this. There are no atheist getting on a plane and there are none going in for brain surgery either. Funny because I had a conversation with my nephew yesterday about this exact subject. He has been raised in the catholic church and school. And has been told this is how it works and he has been programmed that when they say this.... You respond with that..... I don't know if any of them really believe it. I some times wonder if it all has to be such a formula.
I am a good person. I don't kick puppies, would never put my marital vows aside for my immediate desires, I only wish the best for everyone and I chose to believe there is a heaven. I am not sure if I pray. I know when I hear of someone struggling I think about them a great deal - is that praying? Or do I have to get Gods attention by calling him by name? Is just wishing it enough? My nephew said no that I have to sit and really address him. I am not so sure of that. For a while the catch phrase was wwjd - what would jesus do? And what I end up doing is how I would answer that. So does that make me religious or did Jesus just ask us to be the best person that we could be? And I fulfill that request. I don't think you should ever fake it though. If your god is positive thought - then I think that is religion. If it is going down on one knee and praying to god then that is your religion. If it is dancing naked in a circle chanting and it gives your soul a lift - then more power to you!! There are thousands of religions in the world - not all requiring kneeling and sacrificing our worldly goods and praying to one single "person". If you get a chance try to find the recent 20/20 special is there a heaven? It was wonderful!! I ended up thinking I might just like Buddhism. And I loved the dahli lama. So I think life is a journey and we all may just be finding our way. I know that there are some (actually many) who may find this troubling and will end up praying for my "troubled" soul - I am greatful because if I am wrong than I hope their prayers are answered for me. And just as an end note to my belief - when I hear that little voice - I don't think it is intuition or my sixth sense - I do believe it is "God" warning me. And as I have gotten older I listen more and more and it truly never has led me wrong. We tend to think of it as just a fleeting thought - I hear it as screams that should never be ignored.
As for surgery - you are going to be fine. Your kids will have their mom. And you have given this every chance at success. And know I will be thinking about you a great deal.
And since you were raised in the catholic religion - you know - they have recently changed one of the beliefs. I don't know what you had to do before - but now if you ask for forgiveness than you are forgiven. That sound promising - couldn't hurt!! Brain surgery has easy answers - religion now that is a toughie!!
I hope all the above answers have helped with your nerves.
Let me give you a little medical input(hopefully it will help). A Chiari operation is one of the easier operations a neurosurgeon performs. We are working around the brain(perhaps getting just into the brain for cytoreduction of the cerebellar tonsils, depending on surgeon). We understand no one wishes to have surgery. We understand the nerves. We also want you to know you are in good hands. Honestly, I've never heard of anyone dying from a Chiari operation. The risk of dying should not be significantly different for a Chiari operation than for a hernia repair. The primary risk of death is an anesthetic risk, which has about a 1/400,000 risk of death(not 0, but much lower than your risk of being involved in a car accident on the way to the hospital).
Surgeons worry about infection, blood loss, and CSF leak with Chiari operations. The risk of death(which will be on the consent for every operation) is remote.
The phrase I usually use with patients is, "Although you are talking to the brain surgeon, we really aren't talking about brain surgery in your case. The Chiari decompression is more a skull operation, not brain surgery."
I'm sure you'll do well. Elective operations(which virtually every Chiari operation is) are the lowest risk procedures done at hospitals.
Thank you to everyone who responded. It means more to me than I can express to have people who understand and make my fears and emotions valid.
I've been finding more peace in it all. Weird things have been happening to me. Very pointed specific things clearly directed at me that are giving me more confirmation that I ever imagined possible that there is a God. Whoever/whatever God may be. This has given me a lot of peace.
And Beeba, thank you. You got it 100%. You explained my feelings on religion better than I've ever been able to explain it to myself. I've actually saved your response b/c it was so on point to me.
Shirley, this line "I do believe in a higher power and the ability of the one who put me together in the first place to "put me back together" through the hands of the surgeon" is pretty much my new mantra :)
Thank you, thank you, thank you. You all are great.
I'm not going to be on until after my surgery. Keep me in your thoughts, as all of you are in mine :)
I am so sorry that you are so scared, I was the very same way. I am a single mom of 2 teenage daughters. Before my surgery I had a notebook that had all important information in it in case I did not make it through surgery. It had all my wishes for a funeral, I wrote letters to my girls, etc. I was scared to death. I almost cancelled the week of the surgery, when my boss prayed for me and reminded me that I was not in the surgeon's hand, but in God's hands. With that statement I felt relief. I was so happy when I awoke from surgery. It is a normal to be scared. I will pray for peace for you and your family. Many blessings my friend!
Melissa
Chief of the medical staff is the painting patients are greeted with in front of the main elevator at Florida Hospital(Florida Center for Chiari Care)
Becki,
That was moving. I will also be telling my children this week. You hit it right on the money...We work sooo hard to not fall apart for our families. It looks like our family at times are looking to see if we have those same emotions.
Becki Bowling said:
What you are going through is very normal. I did the same thing & when I posted a similar post a lot of the members on here said they experienced the same thing. You have to let out those emotions though or it will drive you even more crazy. I agree with keeping it to a mimimum with the kids b/c they don't always understand. I did the same with my 8 year old. I will say on the night b/f surgery he asked me if I was scared. I tried to smooth it over by saying I was in good hands with my doc but he was insistant in knowing if I was scared. I answered honestly & broke down into tears. Tears I had been hiding from him for months. Turns out he is tougher & stronger then I gave him credit for. He hugged me & told me he loved me & you know it kind of helped me get through that last night a little easier.
Hello Jenn,
Wow...
I feel like I am reading my self here. LOL!
It is driving me nuts that I cant have control over when (or may be I can on this part), finances, where my career will be after surgery, how I will recover or even how my long hair will be cut off, how my family will manage without me?
I also did not realize how much a control freak I was until this has happened. I also had to step back and realize with my faith. Was I in control so much that I did not stop and have faith that My God would work it out? I am still having trouble with this one but I am letting it go day by day. I am thankful that you all were brave enough to express these emotions.
Thank you~
JennRN said:
I promise you that these feelings are completely normal. You are allowed to feel how you feel and you can't always control those feelings. When I read your post it was like I was reading something about myself just 3 weeks ago. I'm a nurse and know a little bit too much to be dangerous. I had only 2 weeks between diagnosis and surgery. The first few days after diagnosis I was in shock. Then it hit me and I spent the next few days in tears. I am very independent so I tried to protect my family from my feelings. However, I did have (still do) a friend who was there for me. I think it is important to have that person.
I kept myself very busy during the week before my surgery. Lunch with friends, taking the dogs to the park, hanging out with my nephew, etc. Finally about 4 days before the procedure I had a moment of clarity. I am quite the control freak and realized that what was bothering me the most was that I felt so out of control. I kept reassuring myself that I did have control of some things. I learned to control what I could and to let the other things go. I trusted my surgeon and reminded myself that he has done this many times prior to me. I also realized that I was making the decision to operate to improve my quality of life. I was doing this for me, just like you are doing this for YOU as well as your family.
I was able to talk to multiple friends of friends before surgery and talked to them about their experience. My biggest fear was the unknown. Hearing different people's experiences helped me. If you want to hear more details I will be happy to share them with you. I am almost 3 weeks postop, and things are still pretty fresh.
Hang in there!
Praying for you & your family & friends. Just a tip....... it's easier to swallow pills post surgical if you put them in pudding or yogurt.
Dr Peter Jannetta told me when I thanked him after my 16 hour CM surgeries & for allowing me not to become a quadripledgic....Not to...That I knew who to Thank. I hope Dr. Trumble you know the level of sincere Thankfulness & Gratitude patients have for their Neurosurgeons. You give children their parents back & parents their children back. It makes for a lifelong connection. Great Post & Picture !!! Thank you....
Dr. Trumble said:
Chief of the medical staff is the painting patients are greeted with in front of the main elevator at Florida Hospital(Florida Center for Chiari Care)
Trust that GOD will take care of you 