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Chiari Decompression surgery

Posted , 14 users are following.

hayleybell
hayleybell

Hello All......

I promised I would write again with an update after my surgery.... so, here I am!

I had my Chiari Decompression Surgery 12 days ago now.

Honestly, it was a hard choice to make, (I have 3 children & a wonderful husband too of course!)

I suffered for more than 7 years after my first diagnosis, many repeat MRI's and panic trips back to neurologists as my symptoms worsened.

Finally, last year, after thinking I had had a mini stroke, only to find out I hadn't- I knew it was time to take control- ditch the neurologists and find a Chiari specialist.

My "quality of life" was hugely being affected as the months went by.

I found an excellent neurosurgeon in Liverpool who is very familiar with Chiari.

I had my surgery, I am home now, doing well.

Yes, it hurts, yes, recovery will take time! But, my neurosurgeon was really pleased with how it went. My brain is slowly adjusting to the the new pressure & flow of fluid.

I was lucky & had no major complications & was well looked after by the NHS. While I was in hospital I met many other Chiari decompression patients, all with a different story to tell.....

I know to expect recovery to take some time. Each day at a time......

If I can offer anyone any support- please just ask....this forum helped me not to feel so alone and I would like to offer some help back in return.....

Will keep you all posted with my recovery-if you want?

Thinking of you all.....x

6 likes, 39 replies

39 Replies

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  • Apple62
    Apple62 hayleybell

    Posted

    I hope you will feel better very soon.  I was decompressed in 2014.  Unfortunately, my 

    story has been negative.  There are a lot of other people that do well.  As you said I

    hope you will be able to encourage others with a good outcome.  Wishing you the

    best for a great recovery and return to a normal life.  Hugs from TX.

    • b2wc97455
      b2wc97455 Apple62

      Posted

      apple, would you perhaps get the docgtor to refer you again to NS to have LP?
    • Apple62
      Apple62 b2wc97455

      Posted

      I appreciate the idea.  The neurosurgeon showed us in the MRI that I had a large area for flow and that everything should be fine.  I went to dentist today took X-ray of my teeth.  He said they were fine.  No cause for pain
  • Stable2309
    Stable2309 hayleybell

    Posted

    Hihi.

    Quick thought, as my decompression surgery is Monday, and it's now Friday afternoon...

    Lots of people have mentioned getting new pillows to aid comfort post op. What sort did people get? I have looked and there are memory foam, pillows with holes, v pillows, u shaped pillows. What worked for you?

    Then i can see if any consensus and buy before I go in to hospital.

    Any other post op advice warmly welcomed...

    In grateful thanks..

    • caroline63191
      caroline63191 Stable2309

      Posted

      Good afternoon 😊 My son got me pillows from Sainsburys memory foam shell pillow. did the job nicely especially when first out. One thing I forgot to mention was you will probably have a drain in your head, mine was taken out next day before going to normal ward. It's now nearly 5 weeks since having mine & I must say feel so much better than I did  a week & half ago....so you might feel it's never ending but it does get better post op....& now just paracetamol when needed. 

      All the best for Monday, if I can help anyway, then just pop me a line. Take care x

    • Stable2309
      Stable2309 caroline63191

      Posted

      Dear caroline63191

      You have Ben very generous with your responses for which I am extremely grateful.

      Thanks for quick answer. If good enough for you, it's good enough for me

      Bring on the op..

    • caroline63191
      caroline63191 Stable2309

      Posted

      Hi, no worries anything to help! We're all different & deal with things different, hope it helps a little. Please if you want, let me know how it all goes! Will be thinking of you Monday. Keep positive & think of the longer outcome. Where you having the op?

      take care x

    • caroline63191
      caroline63191 Stable2309

      Posted

      Good evening

      just want to say all the best for tomorrow, all will be fine.

      Best Wishes xx

       

    • Stable2309
      Stable2309 caroline63191

      Posted

      Thank ls for remembering.

      Mostly prepped and ready (certainly mentally), and leave home in 5 hours.

      The new beard is showing to many silver flecks for my liking, but c'est La vie.

      Will speak on other side once I I have joined the cult of the zipperheads.

      Thanks for the support

  • Nippa88
    Nippa88 hayleybell

    Posted

    Hi all

    I had a foreman magnum decompression 7 weeks ago and I'm still struggling with high pressure csf, my last LP was Wednesday with an opening pressure of 32. I did have chemical meningitis after the op but was sent home after spending 10 days in the hdu unfortunately it hadn't gone, after being home for a week I was rushed back in with excruciating headaches where my NS put me back on dexamethasone for 3 weeks, I've been weined off them now but I keep getting this headache which is just above my left eyebrow, the best way to describe it is a searing pain, I also get a pain in the top of head from time to time and my eyes feel as though they are strained, awww and this ringing in my ears is driving me crazy!!! So my question to you guys is this normal or am I enroute for a shunt? I'm scheduled to see my NS next Tuesday for another LP and CT scan but I'm driving myself crazy thinking about having another operation to have a shunt. If I do have the shunt, what is the recovery like? Will it have limitations to my daily life? I'm 29 and do a lot of scuba diving, surfing etc and finally will i be left with another big scar on my head? Sorry for the long post I just been driving myself crazy with the what if's.

    Thanks in advance everyone and it's really refreshing to hear that most of you had successful outcomes from your surgery.

  • b2wc97455
    b2wc97455 hayleybell

    Posted

    Hi Hayleybell,

    Hhhmm I thought you had decompression awhile ago, anyway, I have exactly what you have - chemical meningitis, my LP was 29..I haad another 3 LPs after surgery, but Dr Flint would not discharged me-- I was staying at the hospital for 6 weeks it was painfu for the first 5 weeks the six weeks was better then I was allowed to go home.

    Dont worry, it will soon be OK, but just have another MRI/Scan - I am sure you will be OK, you might to do another LP..just to drain the water (pressure) from the spine..they normally wait ..if you are ok then they will not do shunt..please listen to your health care professionals but tell the honestly how do you feel, I hope every thing would be OK soon.

  • b2wc97455
    b2wc97455 hayleybell

    Posted

    Dear Hayeybell,

    It has been a while that we communicated with each other, how are you doing now after the op. are back to work?, youh ave got your life back.

  • courtney_40793
    courtney_40793 hayleybell

    Posted

    Hello everyone, I had decompression surgery on 5/10/17 and my surgery lasted 5 1/2 hours!!! I was in intensive care for 24 hours and was in a lot of pain! They rushed me for an emergency ct scan as I was in so much pain and with all of the pain relief I was on including morphing and co cordomol they still couldn’t control my pain! Luckily the ct scan came back all ok but still couldn’t control the pain??After 5 days of being in constant pain, struggling to breath, lack of sleep, not eating or drinking, we finally saw the pain nurse! I can’t remember anything but she had put me on some sort of steroids and took my pain relief down as she thought I was on too much! After 2 days I picked myself up and started being able to control the pain and then after 7 days I could finally eat and drink and even go to the toilet which was impossible for me for 7 days! I am home now but I did end up back in hospital with bad chest pains and rushes of pain to my head! One tip! do not do too much! You want to get better not get worse! Good luck to yous all and I hope yous have a speedy recovery X

     

  • b2wc97455
    b2wc97455 hayleybell

    Posted

    I am glad you are on your recovery days, wait till at least 2 - 3 prior doing a normal day to day chores, you are not recovery yet, if you still feel the pain without pain killer, so..just watch your step girl.
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