Surgery 9 weeks ago

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i had surgery 9 weeks ago and I'm not sure what's happening. Some days I feel better and I'm really pleased with myself and then a few days later I'm straight back to where I started back aches, head aches no energy etc. I find it so difficult to sleep and usually don't go to sleep till 4 in the morning, I feel so drained and down I don't know what to do with myself. Anyone experienced the same thing? rolleyes

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  • Posted

    Yes it took me ruffly 3 month before I sort of got back to some normality Danielle, I still have ruff days even now and over a year since surgery. Don't try to do too much if you can as it's a very slow recovery .looking back I can see how far I have come, but it was sickness and dizziness took its toll on me. But i had specialist nurse in Newcastle rvi to phone if I had any concerns. Even now after a really bad cold I rang her as coughing nearly blew my head off., but thankfully it's settled again. It is slow recovery and if your having good days, that's a good sign. X
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    • Posted

      Thank you for your reply Helen. I know I can see that surgery has helped me a lot it's just disheartening for me I'm 18 and it all seems to have just taken over everything very suddenly.

      Do you or did you have problems sleeping? X

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    • Posted

      I did a bit, but I put that down to nodding off during the day. I couldn't get a regular sleep pattern. Things will get better, but will take time. I don't think I will be normal again but I'm working part time now and you have to be as positive as you can. I'm hoping you can get back to some normality soon x
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    • Posted

      Hi Helen,

      My daughter is also 18 and is one year post op.  she has good and bad days also.  I think it was about 4 months post she was dizzy I called her doctor and they didn't seem over concerned.  Overall since surgery you can count her bad days on one hand.  That being said, everyone is different.  Her doctors NP told us this would happen, drink plenty of water.

      Chin up.

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    • Posted

      It's comforting to know someone else has this too. I have tablets for the nausea and dizziness but only take them if travelling or been doing a bit of bending up and down at pilates, often I end up on my friends mat next me when I lose balance, have to do it very slowly. Lol

      Yes I was told plenty water to. I feel for the young ones with this, I wasn't diagnosed till couple yrs ago although had symptoms for 8yrs, because I'm older it just got past off with spondylitis and arthritis, till spinal surgeon spotted it off a scan for my back and neck..

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    • Posted

      My daughter's came on fast, she started with pain in her neck, then getting numb, then dizzy followed by the sickness.  She didn't have bad headaches.  She is still numb and was told by her doctor that she'll have that for the rest of her life.

       

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    • Posted

      Yes I'm numb on left side of head. It's awful the sickness and dizziness. Suppose every chiari is bit different for everyone. Same as the recovery. X
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  • Posted

    I'm 11 weeks post op and exactly the same.

    It's just normal,apparently. I don't think there's enough warning pre surgery about how long recovery takes!!

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    • Posted

      Your right clare, my consultant told me be fine in 6 weeks! I lost my speech and could only eat mushy food for a wk after op. And the dizziness was awful. I have a good chiari nurse on the end of the phone if I have any concerns. She said the consultant isn't there for recovery procedure so doesn't know the half of it lol!

      This is why I have tried to put as much on here about my operation, as I didn't have a clue what to expect.

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    • Posted

      I was fine after surgery, no sickness, no dizziness! Up the next morning, showered, hair washed and doing stairs with the physios!

      Then I started getting infections in my wound and started feeling crappy again.

      Follow up appointment within 6 months so need to go back to GP meantime.

      So fed up with all of it!

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    • Posted

      It's so frustrating not being able to sleep or get comfortable. They told me it took a long time but it's when you have a few really good days and then go straight back down makes me feel so frustrated and confused.
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    • Posted

      Hang in there, it takes time but it does get better.  This group is a great encouragement as they know what you are going through.  
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    • Posted

      Yeah, it's the frustration of it! I phoned the hospital today to enquire when my follow up appointment would be for after my decompression. Poor surgeon is so busy that its likely to be 6 months! I'm losing the sensation in my leg again, so it's back to the GP for me. That was my first ever symptom! I'm almost nostalgic!!
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    • Posted

      This is a good group. I was on a few American support groups but there was just too much bitching and drama!

      When I was accused of being a bad parent for having children ( well before I was diagnosed!!) who could inherit Chiari that was the last straw!!

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    • Posted

      Oh that's good, what a shame infections have set you back. Hopefully it will pass. My niece has a friend who bounced back ok x
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    • Posted

      I know what you mean I joined one on Facebook and they are not very nice to each other. There is a English one on Facebook now too if your interested? But nobody should ever comment on your parenting as if your not going through enough!
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    • Posted

      I hope you get an appointment soon, I lost the power in my legs a few times it's quite scary not being able to move them in the way I want too!! But hope your okay
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    • Posted

      Hi Clare,

      How are you copping , I remember about your decompression, ARE YOU OK? are you back to work, do you feel much better, do you glad that you have done the op/, are you on medication at all?, is there any restriction wether or not you cancan't do..please share with us..I just so anxious now..as my OP seems getting closer and closer..quite worry but at the same time can't wait as well as can't put up with this pain any longer..thanks Clarey for the input?

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