new member need reasurance

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Hi i have been diagnosed with chiari malformation type 1 and this has led to a spinal sryinx i was told yesterday i am to have operation to allow the fluid to go to spinal cord as this is blocked am terrified any tips out ther thanks 

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  • Posted

    Don't worry, first and the most important tip. Everybodies CM is different so is the operation but they know more about it and have better procedures now than ever. Its easy for me to say but try  to relax. Your symptoms should ease even if you feel a little sore after thats got to be worth it hasn't it? Where and when are you having the op?
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  • Posted

    Hi thanks yeltzer for replying i am having my op in leicester general i havent got a date yet but the neurosurgeon said within 6 to 8 weeks 
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  • Posted

    I had mine 6 year ago, a bad malformation that was cuaterised. Recovery to a couple of months but a lot of people its a couple of weeks. I slept a lot of the time , and I lost a couple of stones (much needed loss)). Best wishes and keep us informed.
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  • Posted

    Hi will try and stop worrying i have been reading all the posts on here and found i could increase my meds so am now on 2 100g 3 times a day which has helped as my family doc does not know much about CM i am 64 years old so i worry about my age on the plus side i too need to lose a few lbs lol i will keep coming back to this site to give me reassurance thank you yeltzer 
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    • Posted

      Thought i would write an update i now have a date for my operation which is Jan 6th for pre op and 8th for main op i will be having it t Queens Med in Nottingham so would be interested to know if anyone out there had theres at that hospital thanks for readingquestion
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  • Posted

    Hi margaret

    i hope you op went well and your feeling better soon, i would love to hear how it went and how you feel now ive an mri booked for friday 16th jan to see if my chiari and syrinx has progressed as my symptoms have gotten worse and will then find out if i have to have the decompression surgery.

    Stacey x

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    • Posted

      Hi Stacey well i am home now i am doing ok taking meds for pain and my gaberpentin i feel week and tired but this is to be expected i was so nervous on the day of op but i was well cared for and out of it for first couple of days but gradually got my act together and making new progresses each day today i washed and got myself dressed and prepared a chicken dinner i have clips out tomorrow so after that i will be able to wash my hair and have a shower heaven lol hope your mri goes ok for you where are you having it done take care xx Margaret

       

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    • Posted

      Im glad everything went well for you, ive had ops before on my spine and understand how nervious it makes you before hand, i get my results back on the 30th of jan so fingers crossed all is ok. What are the clips you are having out? Is this how they close the wound? I dont know to much about the surgery, this may be wrong but dp they cut out the bottom part of your skull to release pressure? Is so do they put a metal plate over the area to protect the brain? How long were you in hopsital for? Sorry for all the questions,id just rather hear from someone whos been throught it then the drs i feel they can never truely kow what its like unless theyve had it done themselves. Im under dr casey at stanmore hospital (near london in uk)

      Stacey xX

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    • Posted

      Hi Stacey i can only speak about my little adventure as i have found out through reading posts that everyone is different.I had my op at Queens Med in Nottingham and i havent had a plate put in the clips are very fine so no pain on coming out these were used to close the wound i was in hospital for 7 days although some people come out after 3 days so again there is no norm my head is still numb and am having headaches but am going to see if i can find out if there are any breathing exercises to help with pain relief i am on paracetamol and gaberpentin .The op itself involves just opening up the bit in the skull where the tonsils are just enough to let the fluid run free there are more technical sites to look on . Margaret xx
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