Chiari Malformation Community
going in for surgery what do i take?
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going in for surgery what do i take?

hi i'm going in for surgery in 8 days i have surgery in 9 days i have a 25mm - 30mm chiari and have been in and out of hospital, i have done some research but can't find anywhere what i need to take into hospital with me. i need to take everything i need as my surgery is happening in another city so any advice would be fab. also i'm a single mum with 2 children with special needs so any advice and tips to help with recovery would be fab :)
Tags: surgery, Recovery, going
23 Comments Post a Comment
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Avatar_f_tn
I'm still pre-op so I cannot make any suggestions, so I'll just say good luck. Hope it goes well.
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1306714_tn?1327260680
I know Selma has a list on a thread for items that you need in the hospital, but the #1 item for me was my pillow, undies, and personal tissues.  I always started my monthly after all my surgeries.  I think it had something to do with the anisegia.  I had extra pillow cases to change my pillow, and any personal needs.  I'm sure Selma will be on and give you the site.  She is always so helpful.  As for your children I don't really have any ideas because mine kids were grown when I had surgery.  Wish you the best and a good recovery.  Your in my prayers.
Linda :)
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1925822_tn?1333709217
Hi.i am not a mother.but take comfortable clothes with u.ear plugs as it can be loud and some personal stuff like a photo.i tell u u will need to rest a lot afterwards!!!and u will need help for ur children.i am honest.i didnt feel good at all until 3months post op.but i do have craniocervical instability and am heading for testing into hospital today for one week.i have  my guardian angels from my sisters and family with me and my little toy lion that was with me all the time of decompression post op.i am wishing u the best.
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1667208_tn?1333111449
My favorite things after surgeries have been... Chapstick, my own pillow, small tokens my kids give me for good luck (seems to be rocks LOL)  My cell phone so that I can text if I am bored and awake, I don't tend to use my cell phone much at all but in the hospital it made me not feel so alone because I could call someone if I felt terrible when I had no family with me.  I agree with the feminine products, Surgery tends to make me start too and having them with you makes life easier!!!  Ear Plugs and blindfold can help  you sleep if you are not in too much pain, especially ICU nights!  In the ICU it never looks or sounds like nighttime :)  Deoderent, toothbrush and toothpaste can make you feel much more alive!  ALSO, a notebook and pen so that you can make notes if you want to be able to remember any questions you may  have when the Dr's visit your room.  I know they don't like valuables in your room but I liked my ipod for music to help keep my spirits up!  Really you don't need to bring much of anything but it is nice to have a few things that help you to feel happy and loved!  The most important part to me has been what I do before I leave home!  Making sure that groceries are stocked up, the house is clean, bills are paid early and there is plenty of food premade in the freezer!  With kids it helps to have things as easy as possible when you get home so premade meals were wonderful, heat and eat made the first weeks much better.  Of course if you have someone that will love to cook for you that is great, in  my house we all hate cooking :)  Being very organized makes things much easier, especially if anything gets more complicated than expected.  Good luck with surgery!  -zygy
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620923_tn?1366319552

  What is ur surgery date? I do not have it listed on the date thread.....or my list I keep next to my comp...I would like to post a prayer thread for u.

Here is the link for the tips for the hospital stay , what to take along etc....

http://www.medhelp.org/health_pages/Neurological%20Disorders/Tips-for-the-Hospital-Stay/show/1136?cid=186

All info is easily found in the Health pages, scroll to the bottom of this screen to locate the hyper link.

Do get urself someone to take care of u and ur children for at least 4 weeks post op....not knowing their age and needs u may need the help longer....

Use this time b4 hand to freeze one dish meals so when u no longer have help u will have things that will be easy for u to prepare.

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2078936_tn?1341950974
hi everyone well i should of had surgery on monday (9th july) but was cancelled so hoping for friday. thanks for all the advice, i don't need to worry about my monthlys as havent had 1 for years i went through the change extremely early :) i now know what i need since i've already been in and come out again its give me a better idea. i also know not to try being so brave and try to do it on my own i was a wreck the night before because i was alone 1 day i will learn!!
my eldest son is 10 with ADD and AUTISM but he is with his dad my youngest is at home and is 7 but with various special needs i will have someone always here for as long as needed to help care for him and myself.
i have stocked up on soups and stews and easy to do things and my mum likes to cook so will try in between her moving house.
unfortunately they think my eldest has the same thing as me but il be recovering when we get results so gonna hope and pray its nothing so please pray for him :) xx
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2078936_tn?1341950974
thank you hope you are getting on ok :) xx
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2078936_tn?1341950974
thank you linda :) xx
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2078936_tn?1341950974
hope everything has gone ok for you thinking of you also xx
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2078936_tn?1341950974
haha yes my youngest gave me a rock so i can throw it at the zombies who want to eat my brain :/ lol i never thought of taking a picture thank you for the suggestions :) xx
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2078936_tn?1341950974
thank you selma will take a look now hopefully i can have surgery this coming friday as my surgery was cancelled monday xx
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Avatar_f_tn
This is silly, but I HAD to have a stuffed animal, as I always have live ones with me at home.  I brought magazines, but I really didn't feel like reading.  I had my iPad and listened to old radio shows.  I really don't remember much of the experience at all!
Oh, I also wore my DH's t- shirt that says "NO WHINING". (he used to be a track coach).  The nurses got a big kick out of that.  It makes for a much more
Pleasant stay when the nurses interact with you as a person, not just a patient.
I hope you have a speedy & smooth recovery!
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1746597_tn?1344810502
I wish you the best of luck!  Everything will go great.  Keep a positive attitude.  I am scheduled for surgery on July 17th so I am also going through all the preps.  Right now I am enjoying my family on vacation.  I wanted the boys to have a good time before hand since they are such worriers.  You will be in my thoughts and prayers!  Best wishes!!!  I will also be taking picture (had not thought of that so thanks everyone)!!
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Avatar_f_tn
Hi.....I just came out of the hospital (I will be 3 weeks post-op tomorrow).  I brought:  my own chiari pillows, my own pjs, socks, slippers, bath robe, vasoline (for my lips--- they were very chapped after surgery), word search and crossword puzzles, my cell phone, and my own hair ties.  They didn't let me have any of these things in the ICU, only once I was moved to a regular room.  I was in ICU less than 24 hours, and discharged from the hospital 1 week after surgery.  I was very glad to have my cell phone, as I was able to keep in touch with family and friends when they weren't physically present.  Good luck to you and let calming thoughts overtake you...you'll heal so much better with a positive attitude and mood.  :)
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620923_tn?1366319552

  Is the surgery scheduled for this Friday?I would like to post a Prayer thread....We do have a List ur surgery date part 2, please post dates on that ...soon it will be part 3 as that one is getting quite full.....
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2078936_tn?1341950974
hiya sorry i ended up back in hospital earlier than expected quite ill i had surgery on friday 13th july in the end i'm just home today but have had the devastating news my eldest son of 10 has chiari type 1 so now waiting for appointments etc to deal with his. mine hasnt done what they wanted and they have warned of more surgery at a later date but will see how it settles after scarring 1st so fingers crossed. thank you for thinking of me xx
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2078936_tn?1341950974
thank you i took books but didnt read any of them i was very lucky to have a nurse who had had the operation so i don't know if that was good or bad coz she just plyed with me with painkillers and kept checking on me bless her lol xx
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2078936_tn?1341950974
hope your surgery has gone well thinking of you xx
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620923_tn?1366319552

  Hi, sorry u had a set back and were back in the hospital...may I ask what happened?

And I am so sorry about ur DS, is he having symptoms? If so what is he experiencing? Does he have a CSF obstruction?
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Avatar_f_tn
Im sorry that you might have another surgery in your future, as well as one for your son.  I hope in the meantime, you can just focus on recovery.  It's a bumpy road.

Only you know your son and how much info he can handle.  I would keep it very simple at first, then answer what he asks.  

(there's a YouTube joke about a little girl asking her mother what "virgin" means.  The mother launches into a lengthy & graphic explanation about love & sexual intercourse, pregnancy, etc.  The little girl then asks:  what does virgin olive oil mean?")
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1306714_tn?1327260680
Glad to hear your o.k., but sorry to hear of future surgeries.  Just focus on today.  So sorry to read about your son. My heart goes out to you.  I deal with the same thing with my DD but she doesn't have insurance so we can't find out for sure.  It's something no mother wants their child to have.  Best wishes sent your way.  Enjoy today.
Linda :)
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1925822_tn?1333709217
Oh no...ur message makes me sooo sad.u just dont deserve that. no one does. does ur son have symptoms or how did they find out? sorry if u already explained and I missed that part...I mean chiari doesnt have to be the same for everyone.as we knoe there are people who live without any signs. But I do understand what a shock as u know what an impact it has on u and no one wants our closest ones to suffer. I send prayers and best wishes ur way...u r in our thoughts and we are here for u.loads of love
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1746597_tn?1344810502
I am very sorry to hear about your son.  I hope all is going well for you and your family.

Thank you for thinking of me.  Sorry for the delay in response.  I had surgery on July 17th and was going well until the vomitting started.  It lasted for 12 hours and everytime I could feel the fluid come out of the back of my head.  The ICU nurses were terrible for the most part.  I had one aid and one nurse that were super sweet to me in the ICU and was there for 3 days before I was moved to regular room.  I had a terrible headache and at one point stopped breathing (in ICU) but I know that it was not very long, it just hurt my head so bad to breath.  I heard the nurse come in and ask my husband why he was not reacting to the alarm and he said nothing sounded.  As soon as I heard is voice it was all ok.  They had the sound turned down on all the machines in my room.  

My NS did not understand why my head hurt so much. On Saturday, I started leaking fluid out the holes from the stitches.  My NS wanted to give it a little time and see if it was residual or was new and also sent me for a CT.  CT did not show anything.  I brought up the vomitting.  He was not aware that this had occured the day of surgery as it was not documented in my chart and the nurses did not tell him.  On Monday morning it started leaking again and he scheduled another surger to repair the patch on Tuesday morning.  

Oh what a difference that made.  I could now open my eyes and carry on a conversation that I had not been able to do for a week.  After the second surgery NS was asked if he wanted me to go to ICU and he told them no that I would stay in my current room.
I had an anastegeologist that was so awesome the second time around.  I grabbed her hand and told her that I get very sick from it and that is why I am going back and she listened.  She gave me "everything known to man and god" to get of the post op vomitting....and it worked.  God bless her!  

Forgot to mention that in between the 2 surgeries I also got a bladder infection from the cathetar (sp).  They had to call in an infectious disease doctor since I am allergic to so many antibiotics and had to be given an antibiotic that only comes in IV form.  Which in hind site is a blessing or I might have been released before the leak was discovered.  My NS went against hospital policy and would not them insert another cathather for the second surgery.

I want to say that my NS is awesome but the ICU nursing staff hindered the diagnosis of the leak.  I would advise everyone that you need to make sure you tell your NS what has been going on and do not rely on the nursing staff to be so forth coming.  My NS filed a complaint on the ICU nurses that I had.  My husband was the one that assisted me the most in ICU.  They did stand around and witness everything tho and should have documented.

Again, thank you for your thoughts.  I will be praying for you and your son!  Best wishes!!
  I have been home for 2 weeks now.  WooHoo!!  Feeling better except my incision is now leaking a yellowish-red fluid.  Went to NS Friday and he said it looked good and he was not concerned with the fluid.  Thought is normal.  
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