Chiari Malformation Community
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why?

How doe you get ready for brain surgery or deal with the fact it has to be done!? Scared to death;(
17 Comments Post a Comment
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1589097_tn?1343436712
I'm in the same boat! Your not alone! Thats why I haven't had the surgery yet! (soon though)
Mazie
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620923_tn?1393294254

  Hi Katie,

I know it is a diff decision, and it is very scary....and if u were not scared, I would be worried about u.

What can help is having the right Dr do all the right testing to see how the chiari is affecting ur overall health and then explaining to u how surgery may benefit u.

All major surgeries have risk, and with all major surgeries this will ultimately be ur choice....the only way the Dr will choose to do surgery with out asking is if u r in a life and death situation.....

So educate ur self, interview a few Drs of the same caliber and make sure u have all the right testing done and then go from there.

We r here for u, and knowing u r not alone helps most of us get thru this....I hope this helps : )
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1306714_tn?1327260680
I think you just answered your own question.  At least this is how I felt about my 1st surgery.  You know in your heart it has to be done.  I know it is hard to deal with and it's scary, but think of the positive.  It does help in the long run and it is worth it for most people.  I know I have no regrets.  We all know how scared you are though.  It's the unknown that scare us.  I just want to reasure you that everything is going to be fine, and we are all here to get you through this difficult time.  Sending good thoughts your way.
Linda:)
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2054597_tn?1344048250
i know i was trying to hold off my surgery for a while but now the time has come where i know i need it it suck big time but good luck to you!
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2054597_tn?1344048250
thank you so much coming on here and seeing other people go thru and understand the same thing as me helps me knowing im not alone and i know deep down i need the surgery done im very symptomatic so I know my dAY is coming soon to get it done but as anyone i can only pray and hope i wake up and everything will be okay ya know thats all thats going thru my head but thank you so much...
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1823499_tn?1370093889
Hi, I'm going in for second surgery and scared also. Thought it would be easier the second time around, boy was I wrong. It was easier the first time, kinda. We just have to keep reminding ourselves why we are having surgery. For a better quality of life. We are in good hands. We are strong. .......Dana
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2054597_tn?1344048250
i hope so sexybare i really do and god bless you for going for another surgery! and thats all we can pray for right...goodluck hun to you
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979826_tn?1389039958
on aug 1 im having my 16th surgery and it never gets any easier but the best way for me to get more comfortable with it is here and everyones support is great and i am sooo thankful for it!
molly
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1663373_tn?1333639589
For me I was so miserable it was scary I literally felt like I was wasting away so I was glad for surgery. I went through it alone as I hadn't found this amazing group of people which was difficult but you have all of us here for you! I think that you just educate yourself about procedure and recovery and have faith that you are making right decision. Being scared is normal!
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1968463_tn?1374761413
It is very scary, and you are never good with the idea that you need such a serious surgery. Like Selma, I remember being wheeled in to the OR, looking at the anestesiologist and telling him..NO, I'm not ready....I want to stop..He said ok, I'll ask you again in a few minutes....would you like something to ease your nerves... When I said yes, He told me to count backward from 100, I don't remember counting...lol. I think most of us get to the hospital and think what the beep was I thinking??? NO..No...lol, but
hopefully you will have a great Dr and a great NS,, and they will be able to calm you as my team did. I don;t thnk the whole scarriness of it ever wears off, just that it lessens the more you start to think about stayiing how you are the rest of your life, and then thinking of the surgery as the first step to better days ahead.
Make sure you are educated on the recovery,as there is so much to know. Make sure and educate the person whom you will be with the most after surgery as well. Them knowing before you even get home what to prepare for helps not only you but them as well!
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2054597_tn?1344048250
yes I know its horriable to eveno think that my time is coming i just pray that these few next months drag as i know i will be having it done lol, and i have bad anxiety so im going to tell my NS make sure im knocked out befor i even get into the or room lol! and im so happy i can come on here and vent, ask questions and talk to other people that get it understand n is or was going thru the similar stuff im going thru its hard and i dont even know what to prepare for ya know like how do you prepare for brain surgery im so new to this all and its all still very shocking to me that its really going to happen!;( but its life and people out there have it alot worse then myself and others on here guess thats how we have to look at it and im just very blessed reguardless what life throws at me but thanks everyone for the support my surgery isnt going to be til sometime the end of oct or beg of november most likey but thats right around the corner....god bless everyone n be strong
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1903798_tn?1333908888
Pray and hang out here with people who get it:) For me surgery was the only hope I had...could NTSC live that way but I was so scared.  It has been 6 months and I would do it again in a heartbeat
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2054597_tn?1344048250
thank you for letting me know your opinion everyones helps me ALOT! i know i need it but dont want it and i just keep wondering am i going to come out worse then i did ya know:/ but yes ive been praying and my family its just starting to understand
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Avatar_f_tn
Oh Katie I know exactly how you feel!  I also do not want this surgery.  It seems like it has taken me months to come to grips with the fact that my symptoms are getting worse and there are new ones that are intermittent now and I am worried they will also become constant.  My gut tells me the only glimmer of hope of relief and halting the progression will be the surgery.  You have such a beautiful family and youth on your side - so much to be better for!  I too think that prayer is so important.  My life is in God's hands, and when I forget that is when I get scared.  Please know that you are in my thoughts and prayers as you journey through this.  I have learned so much from the others here and I am very grateful for how honest everyone is.  Hugs    June
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2054597_tn?1344048250
Thank you so much and me and you sound like were in the same bout myn started about 7 months ago and the symtomps have gotten worse and SO many more have appeared:( and like you said we can only hope its for the better and i say this all the time too its all in GODS hands and i truely belive that.You are in my thoughts and prayers also stay strong xo
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1925822_tn?1333709217
Well for me it was the same like others mentioned...i was bed bounded with 29years...symptoms were rapidly progressing and i was just wishing for any relief...i didnt have a life.i was not able to do nothing anymore.i was praying to get the surgery done...i really had suicide thoughts.now almost 1year post op and working with a great traumatologist (i have a big trauma in my neck muscles) i wil start to go to gym again trying pilates and tai chi.but i would recommend a true specialist with experience...that will make the outcome different as each case is different.
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2054597_tn?1344048250
yes im seeing a NS who specializes in chiari and is great but im still scared as hell lol! and im glad your doing okay now!
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