Surgery in 3 weeks

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Hi everyone,

I'm 22 and was was diagnosed with type 1 CM about 2 months ago and my surgery is scheduled for the end of March with my pre op in 2 weeks. Can anyone talk me through what's going to happen, feeling rather nervous and can't find any experience info on other sites sad

Also, what type of things do I need to take into hospital? And how much hair do you end up losing. My op is at the Walton Centre Liverpool. 

Any advice would be hugely appreciated smile x

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  • Posted

    Hi Rachelle , I too would like to know the same as you . I have only had my diagnosis 2 week . I hope you don't mind me joining in . Jill x
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    • Posted

      Hi Jill

      I hope my reply also helps you to some what degree too.

      Please e-mail me if you have any further questions. I'll try my best to answer them.

      Take care

      Jon

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    • Posted

      Hi Jill,

      Just thought I'd give you an update on things so you know what type of thing to expect.

      I had my pre op a week ago, was a quick run through of the op and the time to ask any questions that you might have. If definitely take this opportunity to ask absolutely anything that puts your mind at ease. Then lots of bloods taken and an ECG done, didn't last longer than an hour and half.

      Have been admitted into hospital today, so again bloods taken and all the usual tests, made the most of eating all my favourites today too smile Met my doctor whose drawn a nice big arrow on the back of my neck and that's all that needs to be done until tomorrow.

      Can have my last bit of food at 12pm then fasting until the op which is tomorrow afternoon.

      I hope that this helps your prepare slightly, best advice I can give so far is to ask absolutely everything that you think of as it will ease your mind. x

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    • Posted

      HI RAC HELLE, YOU HAD THE op, qnd you have to hqve qnother one, is thqt right?, i WISH YOU luck and this time everything will be sorted then
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    • Posted

      Oh I have everything crossed for you , although I am sure you won't need it . Thankyou for update , you take good care , I will think of you tomorrow and however long it takes after smile Please let us know as soon as you can that you're OK (how long exactly is that arrow lol) smile xx

       

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  • Posted

    Hi Richelle

    I am sorry to hear your news. I understand this is a worrying and difficult time for you.

    With type 1 chair I as you known you'll have decompression surgery. I don't know the full details of the operation apart from they will make room from the base of your skull. By doing this the base of your brain will have room therefore leading to hopefully a lack of the chair I symptoms such as headaches.

    I say hopefully because unfortuantly decompression surgery is not a garuntee it will fully help to relieve you of chiri.

    What I missed when I was in hospital was a DVD player and the Simpson's. smile so make sure you have something to keep you entertain. Also plenty to drink to stop dehydration. Hair wise they will shave the back of your head. However being a guy with long hair at the time they might shave under the hair so when it's down know one knows what has happened.

    If you would like a detailed version of what the decompression is I can suggest YouTube and type in decompression surgery.

    I wish you all the best at the end of March and the future. If you need to further talk oe want anymore personal advice please e-mail.

    Take care my dear

    Jon

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    • Posted

      Hi Jon,

      Thank you so much for your advice and kind words, I will make sure to take something entertaining in with me. Your response has calmed me, thank you for that smile

      Best wishes x

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  • Posted

    Hi Rachelle & Dizzy, please have a look at mayo clinic you tube, it is very thorough of all information they giving you..if you still would like to kone more call the ann conroy trust (the nurse0 quite helpful there... best of luck you too, please could you post us how you are getting on after the surgery because mine is going to be in May..that is pretty quick though you just being diagnosed and you already got the appointment for the surgery..how lucky..I heard Walton is so excellent..the NS there are specialize in chiari..so not too worry lucky you...
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    • Posted

      Thank you I will definitely be having a look on there. I've heard only positive things about the Walton Centre so far, so I think I'm in good hands smile

      Will keep you posted smile x

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    • Posted

      Thank you I will definitely be having a look on there. I've heard only positive things about the Walton Centre so far, so I think I'm in good hands smile

      Will keep you posted smile x

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  • Posted

    Hi Rachelle, I had my op there too, you are in good hands!

    your pre op is straight forward. They will take your height, weight, bloods etc and discuss any medications you are on etc....

    I am sure your neurosurgeon has discussed the operation with you....

    As for things to take in.....

    lots of loose fitting pj's, nighties etc. I had button up ones as they are easier to change out of.

    slippers, dressing gown, standard toiletries, lip balm, squash and your favourite tasty snacks. You will feel and probably will be quite sick afterwards, so you won't want to eat a great deal, but if and when you can, do try.

    The meds will make you constipated, fact! So, take some decent laxatives with you or ask for some, you don't want to be straining! Trust me.....

    you may like to read a book or magazine? I couldn't for a few weeks. But I did have music on my phone which helped to distract me from general noise on the ward.

    My best advice is to be positive, do not over do it, rest and definitely do your neck exercises as soon as you can. As for your hair, don't worry about that, it will soon grow back and you can show off your scar to your friends! 

    Can I help with anything else? 

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    • Posted

      Hi Hayley, so glad to hear that you had your op at the Walton Centre too!

      Thank you for all of your advice, I've made up a nice list of things to take on from your recommendations smile

      Can I ask how long is was until you were discharged home following your op? X

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    • Posted

      Your welcome....

      i was home after a week, then in my own bed for a further 2 weeks. Felt rotten for a few months but kept making lots of small steps in the right direction.

      It is a tough recovery, but, now I am on the other side, (10 months post op)

      I consider myself very fortunate to have been able to have the surgery and improve my quality of life. 

      🙂

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    • Posted

      Hi Rachelle,

      Glad to hear you are all systems go, all the best for tomorrow, I shall be thinking about you.

      As I have said before, you are in good hands at The Walton Centre, my husband calls it the Waltz in centre! 😀 Lol

      Before your op they shall get you to wash from head to toe in antibacterial wash and then you shall sport some very fine paper underwear! I was considering putting a smiley face on mine for the amusement of the theatre staff, I didn't though 😷😂😷

      You are being very brave & we are all here for you when your ready to give us an update!

      Big Chiari hugs Hun......From one zipperhead to another! X

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